aliwalidoodah: motherhood, marriage, and life with ulcerative colitis.

Cognitive Behavioural Therapy #1

2009-10-20T14:45:00.000+01:00

On Friday I attended my first session of Cognitive Behavioural Therapy, or CBT as it is shortened to.

Back in July Hubby had made me go to the GP as he was worried about my excessive anxiety, my GP thought I might be a bit depressed and his first suggestion was medication. I was having none of that, I’ve had enough medication to last me a life time, so I asked if I could be referred for CBT having read about it in a magazine. My GP was more than happy to do this and so on Friday I found myself waiting (anxiously, naturally) in the local Mind offices.

I met a very nice lady who talked me through CBT and how it should work and what I need to do etc. Basically CBT works on the idea that it is not a certain life problem or situation itself that is making you unhappy, but how you think about it and how you react to it. Or in my case overreact to it. This idea premise sits well with me as I am a practical person and I like to be in control. Having exercises to go through, a book to read, and goals to set myself will suit me down to the ground. Unlike counselling, which I did not find all that helpful, CBT allows me to accept that I need to change my thought and behavioural patterns and then tells me how to do this.

I read through the initial introductory booklet last night in the bath. It was just a short booklet, maybe 20 pages, with a couple of tick-lists and some scenarios to consider. It is designed to help you diagnose which specific areas you need to work on in particular – depression, thought patterns, anxiety, long-term illness etc. I diagnosed myself as having everything from panic attacks to obsessive compulsive disorder, then got totally pissed off with the booklet and threw it across the bathroom. I realise of course that I am not a panicky, depressed, obsessive compulsive (not all of the time). I was pissed off because it was making me think properly about my thought and behaviour patterns that I have long known are not entirely realistic or normal. It’s difficult to face up to.

That said, my main fear was that the CBT therapist would tell me nothing was wrong. Instead after a discussion and a questionnaire she told me I had severe generalised anxiety (worry wart) and mild depression (bit grumpy). So at least that is a place to start. Having read through the booklet again this morning in the friendly light of day I realise that most of my anxiety comes from my ulcerative colitis. The anxiety built up during and after the long period of relapse and illness from October 2007 until around June 2008, plus of course other stresses and strains such as redundancy and my father being diagnosed with Parkinson’s Disease. The anxiety stuck around and never went away, plus there is the added anxiety about the future and how this illness will develop and affect me. Luckily CBT apparently has a method of addressing these anxieties.

I’ll keep you posted.

In the meantime I continue to crochet, eat bourbons and buy large quantities of horlicks. Mmmmm, horlicks.

No more aches and pains

2009-10-19T11:22:00.002+01:00

It seems the UC Gods were reading my last post! Having woken up in arthritic agony on Tuesday, covered in red marks, I decided enough was enough. I needed stronger treatment for the ringworm and I needed my infliximab asap.

I booked into my GP first of all. The hospital seems to get twitchy if I don’t run everything by my GP first. I had to call in sick to work – I could barely walk, let alone navigate the pits and falls of London Transport, and my doc’s appointment was bang in the middle of the day, leaving me no time either side to commute. My mum looked after munchkin and I hobbled the fifteen minute walk* down to the surgery.

There was a forty minute wait at the doc’s. So I sat and got on with my crochet blanket (you may recall I am a 90 years old) – I am working on a big blanket of granny-squares in purple and cream, it’s very cool and the work keeps my fingers from getting too stiff. When my name was called I did the obligatory grunting as I shifted up from my chair and shuffled across the waiting room. I may even have clutched my lower back and hunched forward, I can’t recall…

I saw a different GP, he has an interest in dermatology so that was handy. He had a look and said that what I had was most definitely not ringworm. Hurrah! I actually have eczema, probably as a result of an allergy to something. This coincides with me finishing my Lush stash, so I have been using ordinary bubble bath.

I left the doc’s with a prescription for an antihistamine, a definite go-ahead for my infusion the following day, and a solid reason to spend lots of money in Lush.

This was nearly a week ago now. I had my infusion on Wednesday and by Friday my arthritic pains had disappeared, I feel human again! It’s funny but even though I knew the aches and pains were UC related I always first blame myself – that I had been working too hard, wearing boots too often, sitting still doing crochet for too long. Why do I do that?

Anyway, the aches have faded and I am back to my 30-something self. In fact at the weekend I rocked the local boot-fair, spending £3 on some nice bone china teacups and some crochet goodies. Had a lovely chat with the woman on the crochet stall, then went home for a nice cup of tea and a sit down. Yup, I’m still 90.

* usually five, and usually undertaken without looking like an extra from Sean of the Dead.

90-year-old 30-something

2009-10-13T09:45:00.003+01:00

The ol' bones are playing up.

When I get out of the car I'm like an OAP arriving, I'm all stiff movements and grunting. I know it's associated arthritis, and lets face it it's better than incontinence, but it's still a pain. Very painful in fact.

My nurse tells me that the next infliximab infusion should clear it up. But it was postponed from last Friday to tomorrow because of the ringworm (see last post), and now the ringworm has flared up again overnight! Except now it is twice as bad. So it looks like no juice for me again this week. And my joints get stiffer and more painful every day.

Last night I woke up because of the pain in my wrists. Getting down the stairs takes me twice as long, I can't bend down in a hurry either, and lifting a two-pint bottle of milk hurts. So life with a three-year-old is suddenly rather difficult.

I am getting a sneak preview of old age. Except when I am 90 I won't have to work and I will be able to push in to queues, and drive badly, and say outdated, rude and insulting things without anyone batting an eyelid, and eat cake for breakfast.

I think I would like to save the arthritis for when I am 90 please UC Gods, ok?

Worms and wounds

2009-10-01T08:51:00.003+01:00

One of the problems with having a chronic illness is that it tends be annoyingly ever-present, even when it’s in remission.

Obviously if you are having a relapse UC makes itself known in the obvious and usual ways (bloody diarrhoea, incontinence and excruciating cramps anyone?) In times of remission the symptoms are less obvious but you will probably still be popping pills every day. You will more than likely be attending regular appointments with your consultant, having colonoscopies, blood tests, or like me you might be in hospital for a day every eight weeks for IV treatment. As well as this you will probably be trying to hold down a job, keep a house, bring up kids, earn a living and be generally be an active participant in life.

Having any additional health problem crop up on top of all this is, excuse the pun, a pain in the arse.

If I have to attend a doctor’s appointment or go to the dentist the chances are it will always be within only a couple of weeks of a consultant appointment, a test of some kind, or an infliximab day. I feel I am taking liberties all the time, with asking my mum to watch munchkin whilst I go to the GP, or taking yet another half day off to attend yet another appointment. I also feel like my repeated presence at the GP surgery leads people to thinking I am some kind of hypochondriac, I am sure the receptionists sound more exasperated every time I call, but then they tend to sound like that all the time anyway.

For these reasons when I notice some peculiar symptom – a dry cough, a slight wobble, aches and pains, strange rashes etc – I tend to leave them a while to see if they go away before I make yet another appointment. Or I ask my nurses when I go in for my infliximab, or I bring it up with my consultant at my next appointment. At my last infliximab* appointment in August I saw a registrar before being hooked up as I had some strange little red markings on my stomach and chest. The registrar had a poke around and checked various things and proclaimed everything to be fine, I had my infusion and that was that.

Then on my return from the wedding in Cyprus last week I noticed the red marks had multiplied. So I went to the GP on Monday, he poked around too and diagnosed….ringworm. This is not as disgusting as it sounds, there are no worms involved, it is merely a highly contagious fungal skin infection…actually that does sound pretty disgusting. I probably picked it up because my immune system is suppressed (the same reason cuts don’t heal so I’m covered in plasters.)

I am due to have an infliximab infusion next Friday, so I spoke to my specialist IBD nurse who checked with another specialist person who said she would be sending a bell and a sign to hang around my neck which reads “unclean”… Actually that’s not what she said. But she did say to stay AWAY from the chemo room (in case I should be planning to, you know, just drop in at any point) until I know I am cured. I have to call again next Tuesday to report in and then a decision will be taken on whether I am ok to mix with the other chemo room occupants. Ringworm can be very problematic to someone receiving infliximab, but more importantly the people in chemo are, as you would expect, very sick – they have low blood counts and a fungal infection like this could wreak havoc.

This is all fair enough but it does surely raise the question – why didn’t the registrar in August spot it? I had ringworm then and I was still allowed to mingle with cancer patients AND receive my infusion? Not only that but I have had it for nearly two months without knowing! It is really bloomin’ contagious! I am a walking fungal infection and I didn’t know.

PLUS munchkin has brought home head lice again from nursery, so I have those too. You don’t want to get stuck next to me on the train let me tell you.

Do any of the UK readers remember the Brittas Empire? Remember the constantly infected weeping wounded Colin? The Deputy Manager in charge of the swimming areas who couldn’t swim himself for medical reasons? That’s me. Now excuse me, I have to go and apply some anti-fungal cream.

* I am going for the record number of times the word “infliximab” can be used in one blog entry.

Triggers and Cycles

2009-09-29T11:53:00.001+01:00

I have never been one of those people who could ever identify a specific food or factor that contributed to my UC worsening or otherwise. Some people can say that they are fine with lettuce but can’t touch cabbage, or that they can’t even look at an egg without dashing to the loo, unless it’s the third Thursday of the month in which case it’s fine.

One reason for this is that I am a slightly lazy sufferer. I could never be bothered to eliminate a certain foodstuff, remember what I eliminated and recall weather the elimination helped or not. This said I have had ulcerative colitis for 14 years which, as well making me feel really old, has led to me learning the odd thing or two.

I’m not great with popcorn, I love it but it does set things off a bit when I am not in remission, must be all those indigestible bits that get stuck in your teeth. Things that are “skinny” – like peppers, tomatoes, kidney beans etc are generally avoided just because it seems like a good idea to do so. I never avoid alcohol as I find it has no effect either way…not that I sneak bottles of whisky into hospital, I just don’t avoid it in the normal drinking situations, like breakfast*.

When I am having a flare-up I tend to live on mashed potato and ham or tuna sandwiches because they are suitably bland, which is generally all I fancy when I am in relapse, I always like to listen to my body’s cravings as I figure it knows what it’s doing. If my body says “oooh chocolate!” at 9am then who am I to go against nature? Incidentally I have never had a problem with chocolate or caffeine either. I do drink a lot of water which helps with many things – wounds heal quicker, my weight stays more stable and I just feel cleaner inside. I keep sliced lemons in the freezer to add to my water, or to pop into boiling water in the mornings to flush the system through.

Generally I eat what I like, then when I relapse I am just sensible with my intake of insoluble fibre and listen to my body. The UC is inflammation inside the intestines so although some foods might irritate or soothe, they will never, in my view, trigger or cure.

Another thing I have noticed, but tried to avoid registering, is that my UC seems to relapse every two years. I can’t really speak for the early years when I wasn’t paying much attention (hands over ears going la la la la…) but certainly my last three relapses have been fairly regular. I was quite unwell in the summer of 2003 just before I got married, I remember because I practically forced my doctor to give me steroids so I wouldn’t be ill for my November wedding. Then just under two years later in March 2005 I became so unwell I was hospitalised for the first time. Just over two years later in October 2007 I got unwell again and was eventually hospitalised in January 2008. That was nearly two years ago which means I would be “due” a relapse around January time.

Now I can hear a million minds thinking that surely by thinking I will have a relapse I probably will. Surely it would be a self fulfilling prophecy. Aha! Not so. You see the reason the very thought has entered my mind is that, just lately, there’s been the odd waves of pain across the top of my stomach, more than average occasions where I have had a bit of a “dodgy tummy”, days when I have been to the loo twice or more. Just the odd little change that’s all, but enough to make me think.

Of course it could just be that cabbage and egg salad I ate for breakfast with a vodka chaser, I just can’t stomach that particular combination on the last Tuesday of the month during a waning moon.

* I am joking…or am I? ;)

2009-09-16T09:38:00.000+01:00

I was reading the latest copy of the NACC newsletter this morning and there was an letter from somebody asking about people’s experiences of employers’ reactions to employees with IBD. I thought this was interesting as hubby (Dan) and I have seen both ends of the spectrum first hand. I’ve always worked for lovely people and Dan has always worked for numpties.

Me:
Employer wise I have never really had any problems as a result of my UC. Dan on the other hand has had particularly hard experiences at work because of his UC.

When I was first diagnosed I hadn’t yet entered the real world of work, plus I was in no way mentally equipped to stand up for my rights – I was too young to care much about the UC and I didn’t think too far into the future. It was in the second job I ever had, organising inspections into Further Education colleges, that my UC flared up. In those days I was so ashamed and embarrassed that I just didn’t say anything about it. I have particularly vivid memories of sitting at my desk in acute pain trying to pretend everything was normal until the pain subsided enough to allow me to stand up and walk to the toilet. It never even occurred to me that I should tell anyone, the very idea of discussing it with anyone would have made me feel quite sick.

Dan:
When Dan was first started getting symptoms he was, still is, a young father not long in a new job. Having lived with me for many years, looked after me when I was really sick, sneaked me tuna sandwiches in hospital, he pretty much knew straight away what the diagnosis was going to be. He’d had a few days off sick when the diarrhoea was really bad purely because he couldn’t commute so when the diagnosis came he immediately sat down with his employers to explain the situation.

Me:
A few years and two jobs later it flared up again pretty badly. So badly in fact that I had to start having some time off work, which I hadn’t really considered before. Looking back I thought of my UC as something I was doing wrong and I was ashamed. I had previously been able to control it by sitting down and waiting for waves of pain and urges to pass, so I didn’t need time off, but this time is had come back stronger. My boss was a very laid back and understanding woman, who talked opening about her MS, so I decided to ‘fess up. I am glad I did because thunder bolts did not strike me down, the world kept going, and nobody from the Sun rushed in to take my picture for the front page, “PA in bowel dysfunction shocker!”
They were really supportive of my symptoms, my sick leave and my hospital appointments and when I left to come to the organisation I work for now they gave me a glowing reference which dispelled any fears my new employers would have about my high sickness levels:

“Ali has had 17 days absence since she started with us and I am clear about the specific causes of this absence, which she has declared to you in her application. I can confirm that she does not have a pattern of ongoing absences. She is punctual and reliable.”

Dan:
After telling his employers he had UC their first reaction was to attempt to disprove everything Dan was telling them. When Dan told them he had been diagnosed with UC and sent them the results of his colonoscopy and the letter from his consultant to his GP they advised him to eat more fibre and, more or less, just get on with it. When Dan sent them more information for employers from the NACC and explained his symptoms affected his ability to commute but not to work they told him he had to take the time off sick rather than working from home. When Dan told them he needed time to attend hospital for weekly blood tests, they asked for a full explanation of his symptoms, his treatment and the prognosis from his consultant, then when they got this he still had to battle for the right to “reasonable adjustments”.

Me:
When my UC flared up badly in 2006 and I was admitted to Whipps Cross hospital my current employers sent me flowers. When I came back to work then two hours later had a severe reaction to azathioprine and vomited they sent me home and gave me nearly another month off work. When I was pregnant and needed extra scans because of my condition they didn’t hesitate. When I was hospitalised again to Queen Mary’s in 2008 my boss came to visit me and had a cup of tea with my mum, when I returned to work we had a meeting and they said they would be treating my UC as a disability and would therefore work with me to make reasonable adjustments wherever possible.

Dan:
After finally getting in writing from his employers that he could work from home Dan settled back into a fairly normal working routine. He was still really unwell and getting to work involved a series of little rituals – always sit on the carriage with the toilet, always go for a safety visit to the loo at Victoria station, arrive at work and go to the loo immediately and so on. He lost weight, his face swelled due to the high level of steroids, he would go out of his way to be first in the queue for blood tests every week at 8am so he wouldn’t be late for work. Then the other girl he worked with was fired and he was left doing all the work on his own – which he did brilliantly, running the department and exceeding targets every week.

Me:
I started infliximab in June 2008 and it worked instantly for me. Since then I have had two days off sick because of a throat infection. My work discuss my health with me every month and check all is well, I have a Friday off every eight weeks for my infusions and I work from home on the days I have appointments with my consultant.

Dan:
In May 2009 knowing the extent of Dan’s symptoms and how hard it was for him to travel his employers called him up to their head office for a meeting – a three hour drive for Dan which required many toilet stops. When he got there, knowing full well the effect of stress on his symptoms, they told him he was to be made redundant, and then they sent him home

Now, Dan is lucky – his new employers have been extremely understanding and have appreciated his honesty, they have told him that his eight-weekly infusion days will be counted as medical appointments and he won’t need to take annual leave, and they take interest in how he has dealt with UC. As is often the case, things turned out to be for the best.

The differences in our particular experiences are very clear. Aside from the infuriating fact that there no consistent way of dealing with illness in the workplace there is the reality that the people doing these things are just other human beings making bad decisions. UC isn’t the only thing of course, many people with illness both less and more severe/serious face the same obstacles every day. What I could never fathom about Dan’s employers was how the individuals involved could go home at the end of the day and sleep well in their beds knowing they had made somebody else’s life a little bit worse, just because that somebody had the misfortune to get sick. What if in the near or distant future they too were to get sick? Or what if somebody else in the organisation did, like the managing director? Or what if somebody they loved dearly (no reason this person wouldn’t be the MD of course..) were to get UC? What if that person were to end up in hospital in pain? Would they then think back and try to remember what Dan had been telling them?

I don’t have the right words to sum up today’s ramblings so I will leave it to the great Douglas Adams who once wrote, “Human beings, who are almost unique in having the ability to learn from the experience of others, are also remarkable for their apparent disinclination to do so.”

Hello again

2009-09-11T08:38:00.001+01:00

That break was a little longer than intended, but I am back! I was never a great blogger – I tend to do a lot of rambling, navel-gazing, metablogging and rather sporadic updates, and to be honest things are unlikely to improve, but so what. I figured that if some inane rantings about bowels might help someone newly diagnosed, or somebody looking for a kindred spirit in the fight against UC, then so be it.

The last few months have been a journey and I am now in a much more positive place than when I left you. Not long after my last post we had a week in the South of France with my Dad, which did wonders for the nerves. When we came back I worked my socks off while hubby struggled on with the job search. He went for interviews nearly every week, sometimes two or three. He had phone interviews, second interviews, third interviews, extra meetings with directors/department managers/teams. It seemed to go on forever. Plenty of “you were second choice”, “we loved you but..”, “thanks but no thanks” and so on. Then one sunny day in August we were at our local park with munchkin, having a picnic with friends, when the call came. I was so excited I did a running leap-cuddle at him and nearly broke his jaw in the frenzy. Oops.

That was three weeks ago and hubby is now at the end of his third week in his new job. The pay is not as good, there’s no commission to speak of, yet, but he loves it. He is eating again and he has his mojo back. Most importantly he is a lot healthier – in June he began to take infliximab and, although his reaction to it was less instant than mine, it has worked wonders; he has been able come off the steroids, though he still takes mecaptopurine.

Family life is finally returning to almost normal and we are slowly adjusting to our new routine (hubby now works different hours in a different part of London so some adjustments had to be made to commuting and childcare etc.) We have days out together without worrying about toilets – well, actually with a three-year-old in tow we do worry about toilets, but in a normal way, like everybody else.

Every eight weeks on a Friday I go to the Oncology unit for my infliximab infusions, every eight weeks on a Tuesday hubby goes to the Day Assessment Unit for his. I get an arm-chair, he gets a bed. I make my own tea, he has a lady that comes round and does it for him. I can get blood results back in ten minutes, his take a day. Obviously there is a healthy amount of competition here.

Having a break from this blog has allowed me to concentrate on other things for a while, which has really helped with my perception of myself. I think that writing about UC, and the plethora of negative events that were happening to me over a long period of time, made me think of myself constantly as an unfortunate and rather hard done by person. Stepping away from this for a while allowed me to assess things a bit more clearly and look at the things in my life that really do define me, such as my ability to cope with chronic illness, and to support my husband through it. And motherhood - I am no expert in parenting but I do the absolute best I can, using common sense and sticking firmly to my beliefs about how to raise her and provide her with a safe and loving home. My number one task is to provide her with the confidence, the life skills and the emotional maturity to go it alone in the world without me, from the moment she arrived I knew she was not mine to keep, but my responsibility to nurture and set free. It amazes me that I can even comprehend this, but I do.

Among other things another major characteristic is creativity. Over the last three months I have immersed myself in sewing, mosaicing and creating. I keep another blog about this side of my life and I pretty much do something creative every day. I never sit and just watch tv, my hands are always sewing or sculpting something. It has been a pleasure to establish a blog and an identity associated with the things I make and it has made me realise how much art can help with healing – both physical and emotional.

So I return to my blog refreshed and more self aware. I still intend to tidy the blog up a bit, who doesn’t like a makeover? But this will come when time allows.

So. How’ve you been?

Bye for now

2009-05-26T09:48:00.000+01:00

Hubby didn’t get the job. Today he is in hospital for his first infliximab. It is pouring with rain, it took me two and a half hours to get to work. I had a UC attack on my way in too, my first in a long long time. Work is difficult. We now have serious money worries. I have been up since 4am having strange repetitive stress dreams, half awake, half asleep.

The last year and a half has been stressful beyond belief and it just keeps going.

I am going to take a break for a while from this blog. I am getting fed up with documenting the hideous stuff. I wanted this blog to be helpful to those with UC, particularly those with children too, and those who have to commute and work with UC. But I have been exceptionally unlucky and I don’t feel my story is a true representation of the challenges those with UC face. Not at the moment anyway.

Writing about what is going on helps me but it is a bit indulgent on my part and I don’t feel it helps anybody else. I have a lot of positive things to concentrate on, so I am taking a few months off to focus on these things, to regroup and come back more helpful and in a better place. I intend to give this space a facelift and make it a more helpful place to visit too.

I will still be lurking around reading all the fabulous UC blogs of course!

So ta-ta (kind of) for now…see you soon…

xxxx

2009-05-21T14:31:00.001+01:00

I don’t want to write this entry as it is going to err on the side of positivity. And there’s nothing kills positivity like tempting fate. Sod it though, can’t get much bloody worse right?*

Hubby and I survived Tuesday, he rested and I cracked on with everything else from dishes to ironing, packing nursery bags, cooking dinner, preparing lunches etc. We got to bed early and we got up at a good early time to prevent the usual manic morning mayhem to get all three of us out of bed, through the bathroom, dressed, out of the door, avoiding the towering banks of stinging nettles, and into the car by 6.45am. We cracked on at work, and the day passed without incident (well aside from the surreal moment my mum called me to tell me that there were ten people from trading standards and five policemen in her driveway, come to arrest the builder fixing her porch door, but that’s a whole other story, and at least it gave the neighbours something to talk about.)

We were up late last night working on Hubby’s presentation for his second interview today. I continued to undertake the bulk of the tasks that keep our busy life running as smoothly as possible, and for some reason decided to make a key lime pie too, like I have time to be zesting limes?! Why would I do this? It must be some kind of reaction to stress – maybe whisking condensed milk is a subconscious way of releasing my anger. Or maybe I just really like pie.

Where was I?

Oh yeah, Hubby’s presentation. He was allowed to give a presentation on anything at all, so he took something that they had discussed during his first interview – football. Hubby’s a football coach in his spare time and has an FA Coaching Badge ( I do not know what this means but it sounds nice) so he related the qualities of a good football coach to what it takes to make a good trainer. It was a pretty good presentation actually, I was impressed anyway. He used quotes from Brian Clough (he was a famous football manager apparently) and my particular favourite was:

“Rome wasn’t built in a day…but I wasn’t on that particular job.”

I love that.

He called a moment ago to say it had gone well. He did manage to mention briefly about his UC. He mentioned he had been in hospital on Tuesday and they had asked the old "Oh, nothing serious I hope?" to which he replied "no nothing serious, just a catch up about a stomach condition I have". Suitably vague and a bit more honest than saying nowt I think, I just hope it all pays off. So now we just wait and cross our fingers and see what happens.

We also got a call from the IBD nurse to say that he will be able to go in as a day patient, so he will have his first infliximab infusion next Tuesday and he won’t have to be admitted.

So, over a few days we have gone from bleak times to exciting times. From the impending doom of unemployment and hospitalisation, to the hope of a new job and the possibilities that a new drug could bring. I am too scared to exhale just yet, but I’ll let you know when I do.

* Yeah, I can see that one on my tombstone, “At Least It Can’t Get Any Worse”

Hubby's UC worsens

2009-05-19T14:41:00.002+01:00

Well the stress of the redundacy has taken its toll. Hubby's UC went from rather bad to rather worse. I eventually persuaded him to call the specialist nurse again and this, combined with the fact I nearly cried like a girl (oh, I am a girl..) during my own appointment with the gastro. consultant when he innocently asked me how Dan was, led to him being brought in for a a flexi sig. this morning.

Hubby was in pain so opted for sedation this time, I am really glad he did as he was, excuse the pun, shitting himself he was so nervous. I took a day's carer's leave to drive him, sod it, this is more important and as it turns out it's lucky I did it.

The UC has spread up a bit and round the u-bend, and it has gone from moderate to severe. Which explains a LOT believe me. They want to give him infliximab but there are no spaces left on the chemo ward for any other gastro infiltrators. I can't give up my place at the end of June either because even if I did they can't "replace" me with hubby, as they are over-booked as it is. So the plan is to admit him onto a gastro ward for a few days so he can get the drugs there. But he has a hugely important second interview on Thursday for the job that could save our financial bacon and land him in a dream role in training. Not that it makes much difference as he wouldn't get a bed this week anyway. Our gastro nurse, saint that she is (actually her name is Theresa..hmmm..) has to liaise with the other hospital departments to try and get the facilities and the nurses together in order to get hubby in as an outpatient next week, or negotiate a bed for him for a couple of days treatment. We'll know tomorrow what is going to happen.

In the meantime he needs to have a chest x-ray, give up a few bottles of blood, stay on the steroids and the mecaptopurine and rest up a bit and mentally prepare for a new medication and a possible slog in hospital. He also needs to commute to and from London, hand over his entire workload and job to his boss tomorrow, clear his desk, prepare an outstanding presentation for his interview on Thursday, go to the interview, get the job, kill the baddies, save the cheerleader and save the world. And that's all before Friday.

One man got made redundant so he went to mow a meadow!

2009-05-10T21:25:00.003+01:00

How to deal with sudden redundancy whilst suffering from active ulcerative colitis:

1. Go to rural Kent
2. Get on a ride-on lawnmower
3. um...well..that's it.

Note the perfect circles, my hubby is way cool.

Ulcerative Colitis and redundancy

2009-05-08T23:28:00.005+01:00

Last week I wrote about the shock anouncement from hubby's work. Well one week later he had a second meeting and was told he was officially being made redundant.

They timed it perfectly: his last day falls just three weeks before his two-year anniversary with the company. This means he doesn't qualify for any redundancy pay, no gardening leave, no nothing. He has four weeks to find a job during a recession.

At first he was relieved but the last two nights he has been withdrawn and tired, his UC seems to have worsened, he wouldn't eat dinner tonight, and he has been in bed incredibly early. I am really worried and I don't know what to do to be honest.

I have two questions to send out to whoever might read this, because I just don't know what the answers are and my head hurts from thinking about them:

1. Hubby was diagnosed over a year ago and he hasn't gone into remission. He has been ill for over a year with no break. He last saw a registrar a month ago and his next appointment is in seven months. Is this normal? I mean, is it normal to be so unwell, yet to be left to just get on with it like that?

My feeling is that hubby should be pushing them for a proper consultation with the actual consultant in the next couple of months, or at least an appointment with the specialist IBD nurse. It just doesn't feel right.

2. Hubby has managed to get himself two job interviews for next week already. Does he tell them about the UC issue straight up? I mean, it's a big factor in his life, it permeates everything he does, so should he 'fess up straight away? Or keep quiet and not mention it until the time comes?

I'm always for the honesty is the best policy approach, but for this, I just don't know. It's not like he's just "browsing" for jobs, he has four weeks to find one.

Here we go again

2009-05-01T09:41:00.001+01:00

Yesterday…..sucked.

Well, about 70% of it did.

Munchkin is ill with a chesty cough, a sore throat and a temperature. She is not her usual sunny busy self and it is horrible and worrying. Luckily we have my retired mum on hand to step in and help us out, which means we don’t have to take too much time off work.

Hubby has not been having a great week tummy-wise. You may remember that back at the end of last year he had a bit of a hard time with getting his work to understand the issues he faced with his ulcerative colitis and the effects it had on his ability to travel etc. Well, they eventually came round after his consultant wrote them a long and rather marvellous letter that backed up everything hubby had ever told his employers, and then some. A couple of months later the woman he worked with in his team was fired for misconduct and the HR director at that point told hubby that she had listened to the opinions of others too readily. In other words his old manager and the colleague who was fired had been leading the HR director to believe that hubby was just playing silly-buggers and wasn’t genuinely ill. The HR director apologised for taking others’ opinions without getting the proper facts first.

Since then hubby has not worked from home. Even though his symptoms have not subsided he just gets on with things, as that is what he prefers to do. With the old manager and the corrupt colleague gone hubby has really excelled over the past few months, making his department more money than ever, exceeding targets and managing a small team. He has regular contact with his boss and the HR director at head office and they constantly give him positive feedback. A month ago he got a call out of the blue just to assure him that he was doing really well and that his job was perfectly save, despite the current climate, as they wanted a continued presence in London etc etc.

On Wednesday he was quite ill so he arranged to work from home, spoke to his boss to explain, had a long chat about it and all was fine. Yesterday (Thursday) he had a pre-arranged meeting at head office, a three-hundred-mile trip up to Stafford. He had to stop three times on the way to go to the loo, but that’s just life with UC.

When he got there the meeting, it turns out, was with his boss and a representative of HR. They told him that the new business plan meant they wanted to move the whole recruitment side of things up to head office and that his post would more than likely be made redundant. They asked him if he wanted to take voluntary redundancy. Hubby said no. Then they said they hadn’t properly decided yet and that he would need to attend a second meeting next week to hear the decision. And that was that.

The worst thing about it, aside from the betrayal and their inability to just tell the bloody truth, is that they knew he had been unwell. Yet they still made him drive the 300 miles, knowing what they were going to tell him and knowing how that would affect his symptoms, and knowing he would then have to get in a car and drive the 300 miles back again.

Hubby noted for the record (as they were taking verbatim notes) that he felt they had acted unreasonably in asking him to make that trip given his illness. They said they “appreciated the effort” he had made. Well obviously not, if they in any way appreciated the effort he had to make they would not have asked him to make it. They wouldn’t have asked somebody with a broken leg to do it, what’s the difference? The effort would be the same.

I know there are more good and kind people in this world than there are bad and heartless ones. I just wish we didn’t keep meeting so many of the latter. This will be the fourth time in three years that hubby has been made redundant.

Pffft.

Still it’s an opportunity. We both want to get out of London and live a little outside the rat-race. Maybe this is a gentle push in the right direction.

Notes from the oncology unit

2009-04-29T08:48:00.002+01:00

Breakfast today – a croissant, a chocolate mini bite, a cup of tea and a sh*t load of work.

I had my second-to-last infusion last Friday. It was a tough one: the unit was busy so I wasn’t hooked up until mid morning and the treatment wiped me out more than usual.

It always astounds me when I spend my regular hours in the oncology unit. There’s lots of talk about shutting down the hospital completely, the A&E unit has already been closed. What will life be like for all the patients of the oncology unit? There’s a real sense of relationships in that little room. The regulars know one another fairly well and catch up on the hospital gossip, the latest changes in their medications, blood counts etc. The nurses have a little connection with each other and with every patient, they know the names of our conditions, the level of medication we take, how we react, and when it’s safe for us to go home. The older patients always quip about who gets the line in quickest, the younger ones talk about their kids and their partners, the nurses all have different paces and different language. “Who’s chirping?”, says one nurse, as one of our monitors starts to bleep. “Here’s trouble!”, laughs another as a regular golden oldie arrives. The male nurse gives me updates on patients I’ve chatted to on previous visits, “…had a healthy baby boy last month” he tells me of the girl who was being treated whilst heavily pregnant.

A doctor comes to visit a very elderly lady sitting across from me. He is going back to India to practice there and to be with his young family and he has come to say goodbye, he has treated her for a long time. She cries because she is sad to see him go and happy for him at the same time, she says she is just being silly. The nurses make her a cup of tea.

The man next to me has cancer and he has a cough, he keeps spluttering and apologising for it. The man opposite me has leukaemia. Most of the patients here have cancer. It always amazes me how normal they all are, just getting on with it, not complaining, not making a big deal, just sitting down, reading the paper, chatting, laughing, making tea. They support one another, take an interest in each other, help each other and understand what the other is going through. It teaches me a lot about humility, and humanity too.

Sometimes there’s another girl who comes in for infliximab, she’s about my age but I have only met her a couple of times. She tells me that she has never been in hospital with her crohn’s, never been too ill with it either, she isn’t entirely sure why she has the drug. Me, I get thirsty for it towards the end of each eight weeks. When the line goes in and the flush has finished and they hook up that bag and it starts to flow I know I can breathe easy for another couple of months even though it stops me getting on with other things – like having a baby, going to work on that day, or thinking very hard about the future. Sometimes I feel guilty just for being there when I am so lucky compared to the others. I feel like a fraud.

In June I have my last infliximab and then we will review it. I may leave the oncology unit behind forever or I may be back. Or maybe by the time I come back the unit will be gone, bulldozed and turned into luxury apartments no doubt. I’ll always remember it though. Like a hopeful waiting room where I waited alongside everyone else for health, for good news, to be told we could go home.

Ipod Wisdom

2009-04-22T08:37:00.002+01:00

This is totally off topic but...I got an Ipod for my birthday.

I've never had anything remotely like it and I have had my eyes opened to a whole new world! Mine is an Ipod Touch. I am now hopelessly addicted to Flight Control, a game where you have to land planes without crashing them into each other (I am not very good at it) and to the "shuffle" feature that just plays all your music completely randomly.

This morning's shuffle wisdom was from Buck's Fizz*: "Trust your inner vision, don't let others change your mind." Ah, so wise so wise.

*Trust me, my taste in music is this bad.

Ulcerative colitis for men and women

2009-04-19T23:10:00.002+01:00

Happy birthday to me!

Today I am 32. Somewhere between being a wishful idealistic student and a busy working mum I reached my 30s. I still feel 12 most days.

We went to the local Pizza Express for a celebratory Fiorentina and bottle of vino. On a Sunday night it was quiet. Just us, another couple, a family having a noisy meal and an odd couple sat behind us who spent the entire meal wearing woolly hats and staring at the waiters.

After the pizzas and the sorbet hubby had to go to the loo. He took longer than most, so guessing he was engaged in a mini attack, I busied myself with texting my friends and studying the weird woolly hat couple. Then I noticed that the two kids from the noisy family were running back and forward from the loo giggling. I kind of guessed why so got the lowdown from hubby when he finally reappeared.

It turns out that he had been sitting in the one cubicle having his...episode...when the two boys came in and started loudly giggling at the smell and the noise. They tried to unlock the cubicle door from the outside before hubby told them to bugger off, at which point they ran off giggling. When he came back out and sat back down with me we could see the two kids smiling and looking in our direction whilst whispering to their family, who did nothing to teach them better.

I was really angered and upset. I was livid that the two boys had been giggling, mortified about the fact they were giggling about the totally unavoidable smell and noise of a sudden attack, and pissed off that their parents were simply not interested in teaching them any kind of social etiquette or any values.

Hubby? Well hubby just thought it hilarious that his smell had made them run off giggling.

"It's a man thing", he said, "a big smelly poo is something to be proud of."

My bathroom: A tribute

2009-04-17T14:16:00.001+01:00

During the early years of my UC, in my late teens when I was in halls of residence at university, then in my twenties when I was in various rented shared flats, I used to dream of my perfect bathroom.

In my mind my perfect bathroom was private, only used by me, with soundproofing so nobody outside could hear what was going on. It would be a wet room so I could strip off to douse myself, and whatever clothes I had soiled, in hot clean water and lashings of fragrant soap. It would have dozens of scented candles, shelves stacked with books and magazines of the variety that are easy to dip in and out of. Never a television though; too intrusive and distracting. Above all it would be clean and luxurious with shining taps and plush white towels, a large shower with all kinds of spray settings, and a deep bath with a ready supply of Lush bath bombs. There would be a holder for my mobile phone (I have done a lot of texting from the toilet over the years) and a mini fridge stocked with plenty of fizzy water and squash...and possibly wine for when the going gets really bad.

This is what I dreamt of during my last bad flare up, when I was stuck at home with a bombsite for a bathroom, before the renovation, when spiders ruled and there was a hole in the roof. That was over a year ago though, this month we paid the last payment on our bathroom and the transformation is now complete. It may not be a wetroom, and there's no mini fridge stocked with drinks, but I think you'll agree the improvement is pretty impressive:

Before

Holes in the roof:

We had to have struts to hold up the roof when the chimney was taken out:

Hubby on demolition day:

This is pretty much how it looked throughout my flare-up last year, nice huh?

Today!

Ta daaaaa!

Lovely big bath (above) and a gleaming shower (below)...

...and not a hole in sight! Even the majority of the spiders have moved out.

Bliss.

Perspective

2009-04-15T22:54:00.002+01:00

Last year a friend of mine lost her mother to breast cancer.

When I met up with her at Christmas she had just found out her father had prostate cancer.

She emailed me today to tell me her brother had died from bone cancer 10 days ago. He was 17 years old.

Think I need to do a little less whinging and a lot more living.

History

2009-04-15T12:19:00.001+01:00

When I was first diagnosed I attended appointments at my local hospital in Kent. I found the appointments a burden, and when I was having flare-ups I found them almost unbearable. The waiting time was usually at least two and a half hours, the nurses would weigh us in batches of four or five and would never disclose to me my weight or any fluctuations. But most importantly during this period I never once, not ever, met my consultant. Instead I saw a succession of different registrars, never the same one twice. So every six months for about four years I would go and meet a complete stranger, to whom I would have to recount my very personal story from start to finish each time, and who had no idea about me as a person or a patient other than the scribbled notes of the previous registrar and so on.

After about four years I stopped going, I simply found the whole experience of going to the hospital too distressing. I moved to East London and If I had a relapse I would just go to my GP and ask for a course of steroids, which I would be given. Once my symptoms would subside I would stop taking them and go on as normal. And that is how it went for the next three or four years. When I got married I even remember going to the GP and asking for a course of steroids as a preventative measure, to ensure I could enjoy my wedding and honeymoon without being bothered by strong symptoms of my UC, my main concern being that I wanted to be able to walk down the isle and stand to say my vows without being hit by that sudden urgency. When I look back now and think about that, I realise how unwell I was for such a prolonged period of time. Yet I fell through the cracks in the healthcare service – my GP knew I was unwell but no advice was given and no referral made. The consultant and his army of registrars knew I was unwell yet when I just stopped going to my appointments they wrote to my GP to say that I wasn’t coming they assumed I had made a full recovery and was no longer in need of their services. No connection was made.

When I eventually collapsed in the bathroom one night early in 2005 and was carted off to Whipps Cross in an ambulance it changed my life. I met Doctor S and I remember him saying “It seems you have fallen victim to a lack of appropriate care…though you are not completely innocent”. I knew exactly what he meant, he was saying Hey you’ve had a rough ride, but you could have tried a bit harder. He was right of course, he always was. Doc S and his team picked me up, dusted me off, equipped me with the knowledge I needed to control my own care and gave me some confidence in the NHS and in human nature once more. When I moved back to Kent in 2006 and then found myself facing hospital again in 2008 it was with some trepidation that I transferred my care back to the original hospital I had endured ten years earlier.

That was a year ago now. I have survived ok – though I still feel quite out of touch with my consultant, who I usually see at one out of every three appointments, and never when I go in for my IV infliximab treatments. But I have a great specialist IBD nurse, a direct line for my consultant’s secretary and a spirit of steal when it comes to getting the answers I want to my questions. I am older and wiser and I have the scars to show for my battles so far. But I do feel for the newbies coming into the system, there’s just not enough information about how to handle the NHS and how to get what you want, even how to know what you want.

Hubby is one of the newbies of course, but he has me fighting his corner*. Since being diagnosed a year ago his symptoms have sometimes got a bit better and sometimes got a bit worse, but they have never gone away. He had an appointment with his (our) consultant yesterday and saw a registrar, not the usual registrar either, but a new one he had never met before. The new registrar decided to reduce hubby’s steroids, increase his mecaptopurine and encourage Hubby to take the predfoam enemas daily (Hubby doesn’t like them but needs must). He came away from his appointment with a new course of action but with a feeling of the appointment not being a great one. Why? Because confidence in the decisions made about your health, the most precious thing you have, cannot grow if there is no consistency. It makes me angry that I can see my own history repeating itself in this way through Hubby’s experiences.

Except I suppose this time I can do something about it, and rest assured I bloody well will.

* bossing him about.

Milestones

2009-04-09T08:35:00.004+01:00

March and April are busy months in the aliwalidoodah house. Within a period of three weeks we have eight birthdays in our close circle of family and friends, including hubby’s, munchkin’s and mine, plus one wedding anniversary. It’s more hectic than Christmas, and with possibly a lot more chocolate and cake.

To make things even more exciting I fell down the stairs last week. I slipped and bumpity bumped on my bottom all the way down the staircase at my mum’s house last Thursday morning. Man alive it hurt. I have carpet burns all down my arm and a bruised and battered coccyx, I can’t sit down properly. This means my daily commute is spent standing up the entire way, I have to sit on a padded envelope at work (I am very resourceful), and getting in and out of the car is immensely painful. My family think it’s hilarious to see me shuffling around like an old lady and wincing every time I floomph down on the sofa forgetting that the impact will cause me pain.

Dramatic accidents aside though I really do love this time of year. This year seems ever better for some reason. For once I am not in hospital or recovering from a stay in hospital, the bleak winter of economic gloom and doom and darkness is blossoming into a lighter, brighter, warmer climate (at least weather-wise), the daffodils are out and we have just made the last payment on our bathroom. I am currently not in need of a change of knickers every time I go out the front door and I am steroid free.

On the downside Hubby is not doing so well. His symptoms have been quite bad actually. So we had a long think and decided I am to continue with my infliximab infusions until the end of the course in June/July. Told you I was fickle. We just can’t risk the both of us being ill. Especially seeing as we’re flying with Ryanair in June. It is hard enough as it is with one parent being so unwell. But we muddle through, somehow, with our one toilet and our own little systems and rules to keep the daily routine ticking over.

Last week saw four milestones: hubby’s 33rd birthday; a whole year back in work for me; a year since hubby’s diagnosis; but most importantly our little munchkin turned 3. Our biggest achievement to date and proof that, even with all the odds against it, some good can still happen. We celebrated with a day out at Howletts in Kent to see the monkeys. Hubby was extremely excited to find out that the honey badger is a real creature and not just a fictional animal made up by Richard Hammond. A successful day all round.

2009-03-24T14:17:00.000Z

Going on from my previous musings about whether having UC has made me a better person than I would have been without: I observed a small scene on the DLR the other day. During my journey home a man with a pronounced limp and a walking stick boarded at Mudchute. The train wasn’t packed but there were two people, a man and a woman, sitting in the seats reserved for less able bodied people. Both seated-man and seated-woman made to get up and move. The seated-woman though happened to be nearer the inside of the train and easily shuffled across to another vacant seat. The seated-man therefore sat back down with the walking-stick man settling down beside him.

The walking-stick man then started loudly muttering at the seated-man saying, “happy to let a woman give up her seat instead of you then are you?”

I felt so incensed by the situation that, wuss that I am, I nearly cried.

Was it a lifetime of discrimination and ill-treatment that led walking-stick man to be so rude and unfair? Or was he just a git by nature regardless of physical disability. Why was he so narrow-minded? Why would he assume the seated-man did not have good reason to be seated? Not all disability is visible. Not everybody in need of a seat on the tube is brandishing a stick, pregnant or in obvious difficulty.

Anybody who has had to work and commute with UC or Crohns knows how difficult it can be. During my most difficult moments of commuting with UC I have got off of trains and tubes rather than have to explain to anybody my reasons for needing a seat. Lets face it I would have pooed myself by the time I had convinced anyone anyway. I have sat there under the death stares of pregnant women because I haven’t given up my seat for them. I have been both a pregnant commuter and a UC commuter, trust me when I say the latter is vastly more difficult. I cannot comment on commuting with a walking-stick of course, though I suspect it would be fun to have such a weapon.

I’ve seen quite a few of these Baby on Board badges lately. Maybe the NACC should consider producing some. ”Defective Bowel: Stand back!” for example. Or perhaps “Poo on Board” might be cuter.

Hmmm.

Disgruntled commuters aside, it is spring, hurrah hooray. The weather has turned fresh and sunny and there are sponsored walks springing up all over the place. This year my mum, the hubby, munchkin and me will be walking the NACC London Walk. Then strangely my step-mum accidentally signed us up for a sponsored walk for NACC this Saturday in Basildon (not the Essex one, the other one). She had signed us up thinking a nice walk in the country would do us all good and that she could run the 6k circuit to get some practice for a sponsored run she is doing for Parkinson’s in April (aren’t we a charitable family?) Then she realised the run was to raise money for NACC! It was all rather excitingly spooky.

We need sponsorship to raise lots of money so if you want to donate your hard earned cash please let me know and I shall send you the link to our justgiving page. Give me your snail mail and I will send you chocolate in the post in return for sponsorship. That’s called bribery that is, though I prefer to call it enticement.

Walking with ease

2009-03-16T20:52:00.002Z

Munchkin and I went to the farm today. You wouldn't believe from the photo that it was in South (saaaaarf) East London would you?

We walked along muddy paths, looked at pregnant sheep, rescued hens, and frisky cows. We spent ages running around a pond where we found centipedes and worms hiding under logs. After a good hour and a half we had to run quickly to the loo.

Munchkin is potty training you see and like any normal young family we need to make the odd quick pitstop, for the pre-schooler not the parent these days.

I never get tired of the novelty or the privilege it is to walk around for yonks, far beyond dashing-distance to any loo, and not have to worry. I always appreciate how lucky that makes me.

UC has shaped the person I have grown up to be, and I do wonder sometimes, in a rather uncomfortable way, how I would have been if I had never had it. Would I have been a better or a worse person?

Either way, I still would have navel gazed way too much than is healthy for a Monday afternoon.

Sick day

2009-03-10T14:24:00.002Z

Hubby took the car and shut the door firmly behind him this morning with the instruction to do nothing but rest all day.

I am not paricularly good at resting outside of my appropriate resting times (after work and all the washing is done). So I called work to let them know I am sick yet again and I tidied and cleaned the kitchen, did a couple of loads of washing, hoovered the house and then, in the spirit of resting, I spent about four hours mosaicing...which meant I had to hoover again.

I do feel better though for staying indoors and I am determined not to feel guilty about it for once. Apart from the fact I am a lazy crap mother who can't even get off her arse to go to work with a cracking throat infection. Apart from those things I will not feel guilty.

Sigh.

Drop-in clinic

2009-03-09T19:32:00.003Z

Towards the end of last week I developed a niggly sore throat, which quickly turned into a slightly annoying cold, which over the weekend turned into a hacking-razor-blades-in-jelly old-man cough and enough snot to rival...um...something, like, totally snotty.

Annoyingly this weekend was my long awaited weekend away on a mosaic course in Broadstairs. My creativity was somewhat hampered by the nose blowing and strepsil sucking and the constant desire to be tucked up somewhere warm with a telly and a family sized bar of dairy milk turkish delight...where was I? Yes, so I was snotty and creativity stunted. My powers of observation were at such an all time low that I didn't even realise until Sunday afternoon that I had spent the whole weekend mosaicing away and chatting to a famous Radio 4 broadcaster and Times journalist. All I knew was that she was a nice older woman who made a nice mosaic bird as I made my butterfly. It wasn't until lunch time on Sunday that someone mentioned she was doing some stand-up for comic relief that the penny finally dropped.

What has this all to do with ulcerative colitis you ask? And you'd be right to and the answer would be not a lot. Except for the sore throat; the THIRD throat infection I've had in the last three months with each one being progressively worse. This current one is a corker. My mum checked my throat for me this morning and when she said she could see "pusy white bits" I got to the Monday morning GP drop-in clinic pretty sharpish. After waiting an hour and a half I saw the locum, a lovely bloke. Shame he told me UC was mainly evident in people who are a bit on the stressy side. I am pretty sure the law is against wolloping doctors with their own medical books. That said, in my case at least, he had a point.

He comfirmed that I was coming down with these infections more often and more acutely because my immune system is compromised by the drugs I take, so he gave me a nice big double dose of something ending with "..cillin" with a lot of x's and y's in the middle, and some steroid cream for the strange little eczema spots that have come out on my arms.

I feel pretty hideous and I feel like I could do with a day in bed shaking it off. I know from experience that this will help enormously but I still find it really difficult to do. I hate taking time of sick from work because in a strange way I am storing all my sick days for when the going gets really bad, as if I am somehow making up now for a future time when the shit really literally does hit the fan.

Life with UC, for me at least, feels to be constantly in limbo, waiting for the next big event, be it a stint in hospital, surgery, a prolonged absence from work during a bad flare-up, a failed drug or a bad reaction. Obviously I am not sitting around twiddling my thumbs and gnawing my nails waiting for disaster to strike, not at all. Life goes on and I get on with work and family, high times and low times the same as everybody else on the planet.

But it's always there. And sometimes, like today, I wish it would bugger off.

So bloody tired

2009-02-25T12:40:00.002Z

Well things went from odd to bad last night.

I passed out around 10.15pm after winning some fabulous fabric fat-quarters on Ebay (I have it in mind to make a cushion or two.) An hour later I was woken by a not-too-loud banging sound coming from next door. I ignored it at first but when it persisted I went downstairs to look at the window to see what the noise was. We live in pretty close proxemity to our neighbours but it is rare that we get a lot of noise, especially banging at 11.30pm. I couldn't make anything out so I unlocked the back door to investigate. The sound of me shoving the door (must sand down the door jam) brought my neighbour to his back window, in the room that is next door to munchkin's. I said I could hear banging and he said they were wallpapering the spare room. He was full of apologies and promised to be finished in ten minutes,which he did. Munchkin hadn't even stirred.

But I couldn't get back to sleep. My mind was racing with the whats and whys of my tummy troubles earlier in the evening, and with various thoughts and pointless worries that kept coming to the forefront and wouldn't go away.

I finally got to sleep around 3am.

So today I am exhausted with bloodshot eyes and, as one of the guys in Finance just said, with a look about me like somebody who had just realised they've left the gas on.

Interesting

2009-02-24T21:08:00.004Z

A normal day at work - busy with little time to stop and rest. A normal commute home - trains all running a reassuring 5 to 6 minutes late with the correct spattering of numpties. A normal evening - munchkin chatting happily, bath time, stories, bed. A normal poo. A normal meal - cottage pie, light on the beef and cheese with plenty of veg.

Then in the space of one hour 9 "hurry quick fast" trips to the loo, cramps, diarrhoea and some blood.

I am now in bed with my laptop feeling somewhat drained, a little bit concerned, and wondering if the lentils I had last night were undercooked.

What on earth was that all about?

It worked!

2009-02-20T09:05:00.001Z

How very exciting.

Test

2009-02-20T09:03:00.001Z

I've just set up the blog so I can email posts to it and I want to see if it works. The picture above is the obligatory sunset shot from my honeymoon six years ago, one of many.

If this works I could update at any point throughout the day! Just think, you could have endless drivvle on an almost hourly basis! Think of the possibilities!

Moving on

2009-02-18T08:51:00.001Z

We’ve decided to wait a bit. I am going to have my next infliximab on 27th February then stop it altogether and see what happens. I know I can’t go on with this miracle juice forever, just like asacol, just like azathioprine, just like prednisolone, it must come to an end. The difference is that this time, aside from luck, infliximab is my last option. My ulcerative colitis has long been resistant to steroids, I am severely allergic to azathioprine which counts out cyclosporine as treatment for my condition with this drug would also involve some azathioprine.

So there we have it; about 12 years of hospital visits, waiting rooms, colonoscopies, blood tests, drugs, poking, prodding, lovely nurses, horrible nurses, lovely doctors, horrible doctors, weighing chairs, IVs, yucky calcichews, commodes, life changing meetings and experiences. UC and me have grown up together but now it is time to let go. After the 27th February I am drug free, if my body can’t fight the UC then I won’t keep trying to force it to try. The infliximab has done what I always hoped it would: given me a taste of real life where routine daily activities are not ruled by needing to get to a bathroom, where pain isn’t a daily fact of life and where people walk ten minutes from the station to work and back again without pooing blood*.

I know now what a normal life can be; knackering, difficult, stressful and with its fair share of numpties, but active, healthy and happy nonetheless. So do your best ulcerative colitis, I’m ready for you. The last few years have been the most difficult of my life and if I could deal with those without crumbling into a quivering heap at the bottom of a tequila bottle, smeared in chocolate cake and muttering about goblins, I can deal with anything.

“No one is ready for a thing until he believes he can acquire it.”
Napoleon Hill

* Sorry. Sometimes my too-much-detail filter doesn’t work.

Government guidelines

2009-02-12T08:58:00.002Z

Eat 5 portions of fruit and veg a day

Don’t exceed 2.5 units of alcohol a day

Get 30 minutes of exercise five days a week

Drink 2 litres of water a day

Then I get a bloody leaflet through my door telling me I need to ensure the kids don’t watch too much telly and that I need to have them up and running about for 60 minutes a day. No shit Sherlock. Have you ever tried to STOP a toddler running around for 60 minutes in a day?

Every day we are bombarded with Dos and Don’ts and are constantly being told what is and isn’t best for us, for society, for the planet. I am even feeling guilty about putting the little plastic tags from the labels on munchkin’s new nursery clothes in the bin, not to mention the guilt for buying her new clothes in the first place…was child labour involved in their production? Should I be sewing old clothes together to make new ones in a make-do-and-mend fashion?

Here are my own guidelines for a busy working mum with a chronic illness:

Food - Eat what you can if you actually get a chance to sit down, try to eat five portions of fruit and veg. Carrot cake, vodka and orange juice, and organix fruit bars all count. Don’t forget to avoid all insoluble fibre, so peel all grapes, apples, onions, peppers, tomatoes, potatoes, pears and berries. Better still have someone peel them for you. If all else fails just finish off the kids’ fish fingers. At least you’ll be getting some of the recommended daily dose of omega-3, that'll keep the government happy.

Exercise - Run around like a lunatic from the moment you wake up at 6am until the moment you finally sit down for dinner some time after 8pm. In between sorting out the kids, dashing to the station, dealing with the commuting-numpty-freaks on the DLR, working for 9 hours then doing it all again backwards, try to make some “me time”, it’s important to relax. Me-time can include hanging out the washing, cooking dinner, doing the washing up, ironing, sitting for hours on the toilet, getting packed lunches ready for the following day etc.

Water – drink at least two litres daily – this can include diet coke, dr pepper, tea, coffee and any other caffeine-based drink that will keep you going.

TV – when you have spent two hours pretending to bake cakes using animal dominos, plastic fruit and pirate treasure, half an hour playing hide-and-seek with teddy bears, an hour persuading a two-year-old to use the potty instead of the floor for wee-wees, read the same Angelina Ballerina story four times, and it is still only 9am, you can plop the little darling in front of Peppa Pig for 45 minutes guilt-free. Repeat as necessary throughout the day.

Alcohol – just try not to drink before breakfast…

Decisions decisions.

2009-02-11T08:53:00.002Z

Every so often you come to one of those bits in life where you have to make a Momentous Decision. You get to a point where it is time to decide which fork in the road to take. This is one of those times. Bloody hell, I am too tired. Can I not just decide whether to have coco pops or frosties instead? That would be more my level at the moment.

So. I went to see my consultant on Monday. I didn’t see the head honcho himself though, I saw the specialist IBD nurse, this is fine by me, she’s lovely. We talked about the fact that I have been on infliximab now for about 7 months and have been doing tremendously. She explained they are reviewing all UC patients being treated with infliximab to decide how long the treatment should last and how and when it should be prescribed in future. Blah blah blah. I asked about having another baby and how the infliximab would affect my choices; it is a thought that has been lurking around at the back of my mind for some time, neither surfacing nor hiding completely, just…lurking. Talking to another female can bring these things out though so there it was, the question, out in the open.

“Well,” said the IBD nurse, “you have to wait six months from your last infusion before you can start to try”

This I knew. Nice familiar information. Have my next infusion in two weeks, then wait six months to see how the ol’ body copes and try for baby number two.

Simple?

Nope.

Can we afford a baby? Can I even do it all again ; the sleepless nights, the screaming, the reflux, the smelly bottoms..and that’s just me. Breastfeeding! Good grief that one was a toughie to master the first time round. The emotional rollercoaster of parenthood, the constant feeling of guilt and utter uselessness. Not to mention the question of whether or not it would be fair to bring another human onto this plant full of grief and economic crisis and climate change and Dancing on Ice.

”Or you could just cancel you next infusion and start trying in four months”

Blink.

It hadn’t even occurred to me that it has been a almost two months since my last infusion. I could abandon infliximab immediately and we could start trying in June.

Simple.

Nope.

At the moment my UC is ok. I am not normal, I don’t think I’ll ever see normal again as far as my bowels go. But I am able to lead a full life of quality, unhampered by pain, blood loss and dashes to the toilet. I am able to work, to take my daughter to the park, go shopping and to sit on public transport for over forty-five minutes. However when it’s time to go then it is Time To Go. And when I do it would probably be what a normal person might describe as a bit of dicky tummy. In another four months without my precious infliximab will I still be ok? If I am still ok and I manage to get pregnant what if I get severely ill during my pregnancy? Isn’t that putting the baby at risk? What if I am severely ill after the baby is born? How do I look after a toddler and a newborn? Hubby is ill as well so I cannot fall back on him as much. That’s another issue, hubby is on mercaptopurine , I haven’t even begun to look into the effects of this on us getting pregnant.

Munchkin is 3 years old in March. If we wait much longer the age gap between her and her sibling will be huge, I want her to be able to play with her younger brother or sister. But then I like our life now as it is, maybe our little family was only made for three?

I just don’t know what to do. Coco pops I think.

Snowfall

2009-02-06T09:18:00.002Z

I for one do not feel in the slightest bit enraged about London and the South East being a bit pants at handling some snow. It felt like Christmas morning on Monday when an unfamiliar glow seeped round the edges of the blinds and woke me before my alarm. We woke the munchkin up by telling her snow had fallen and she was wide-eyed when we pulled back her curtains. She was too excited to wait so we opened up the window and prodded at the snow on the ledge. That excitement was admittedly short-lived once she actually submerged her wellie clad feet into it. About ten minutes was her limit before she proclaimed the whole experience “too cold” and went back inside to watch Peppa Pig.

With all the trains cancelled (not that we could get to a station with no buses running and the car buried in snow at the end of our 20 foot ice-rink of a driveway) Hubby had to work from home so we were all together for the day. We managed to persuade munchkin out for walks around the neighbourhood every now and then, and when we did we met neighbours we’d never even seen before, we were introduced to dogs, nodded hellos to strangers and exchanged little smiles as if to say I always knew these wellies would come in handy.

So the snowfall that ground London to a halt may have lost the economy a billion quid? What’s that compared with a day off chucking snowballs at your nearest and dearest, snuggling up with hot drinks and building snowmen. God knows we’ve all had a rough old year, maybe this was nature’s way of giving us a day off, some time out from the shit (excuse me) and the noise. The snow calms everything, just for a short while.

As Max Ehrmann wrote in his famous poem, "With all its sham, drudgery, and broken dreams, it is still a beautiful world." And if this week is anything to go by, I think I just might believe him.

Ikea

2009-01-23T17:00:00.001Z

Ikea in the evening is very depressing.

Hubby and I were on a mission to buy a wardrobe (I am fed up with sinking knee deep into piles of pants and t-shirts every time I walk into my bedroom) so my mum popped round to babysit and we drove over to Lakeside. I find Ikea depressing in the evening because I hate seeing the amount of people who choose to take their toddlers, pre-schoolers, and young kids. They should be at home, eating dinner, going to bed, doing homework, playing. Unless for some reason it’s your eight-year-old’s dream birthday treat to be taken to Ikea to look at furniture on a week night, why do it? It just seems so selfish to me. That said, everyone parents differently, some are just way more relaxed than I am (not very hard) and they are more than likely still really loving good parents.

But on this particular evening in the beds section, as we ummed and aaahed over which size wardrobe to get, we saw a young girl, maybe nine years old, she had been playing on one of the display beds and dropped her mobile phone. The girl couldn’t reach it so her mum came over, she seemed a bit annoyed, I suppose you would be. The mother was dressed immaculately, like she had just come from a day being the prime minister’s PA. Once the phone had been found the mother just launched into a foul-mouthed tirade at her daughter, “f*&%$ing kids! Look at you f&*^ little s*&t! Don’t look f£$%ing bothered will you?” She just kept shouting as she followed the young girl through the shop. Everyone just stared not quite believing what we were seeing and hearing.

And you know what? Not one of us said anything. Not me, not hubby, not a single other person. So what does that make us?

Happy 2009

2009-01-21T08:48:00.001Z

One of the things that has really grated on me recently (and excuse me for jumping straight in here without reference to my long absence) is the amount of stuff I read on websites, and in literature at the hospital, and the DLA info etc, which tells me how UC isn’t all that debilitating for the person suffering from it. You get all the technical information about bleeding and urgency, diarrhoea, tiredness and the like, the DLA guidance even points out that it doesn’t affect mobility as sufferers can still move their lower body. Hmm, clearly those who write the guidance have never tried to walk to work in the morning during a full blown relapse, then they might learn a thing or do about mobility. They might learn a thing or two about the importance of black underwear, spare clothes, incontinence pads and baby wipes too. It just really gets up my nose. My whole entire life is affected by my condition, and my hubby’s too, yet if I were an alien landed on the planet and given a bunch of leaflets I’d probably think it didn’t sound all that bad.

Clearly being off steroids for nearly a month has affected my brain – I am starting to talk about little green men.

Now an update: I, we, still live daily in the shadow of UC, nothing’s changed there. Some days are better than others for hubby, most days are good for me. I am still getting infusions of infliximab every eight weeks, hubby still takes a cocktail of steroids and autoimmune drugs every day. Like everyone else the recession is crunching at our heels. I guess I needed to get away for a while. Don’t get me wrong I love a good long whinge and a reason to get out the ol’ soap box, and this blog is always the perfect place to come and do that. But I needed a distraction for a while. Our five-year wedding anniversary was in November, followed by my favourite time of year Christmas, I’ve been working a lot on my mosaics and now all of a sudden it’s the end of January! Where did the time go?

My little baby is no longer a baby. She has shed the waddle of the toddler and replaced it with the confident stride of a pre-schooler. She will turn three in March. Three going on forty-three; the other day I told her we were going to go and pick up Daddy from the station, “No mummy” she said “We’re going to collect him.”
Well.

So, happy new year. And in the words of John Lennon, let’s hope it’s a good one…

Disability discrimination?

2008-11-18T13:49:00.000Z

With hubby’s condition taking a turn for the worse a couple of weeks ago he called our specialist IBD nurse at the hospital. The nurse was, rightly, concerned and booked him in quickly for a sigmoidoscopy the following Tuesday (last week) to be preceded with blood tests on the day before. Hubby asked his line manager if he could work from home on the Monday so he could have the tests, they said no. As it turns out his condition worsened further over the weekend and it became increasingly difficult for him to leave the house, by Monday he was up at least three times in the night and was very ill and exhausted. It was apparent he was too ill to travel into work so he called in sick and spent the day sleeping.

On the Tuesday he got himself to the hospital for his procedure then came home and rested. He had an opportunity to talk to both the consultant and the IBD nurse which he found really beneficial. They decided to go ahead with mercaptopurine and they also increased his steroids back up to 20mg. But the procedure had left him with exacerbated symptoms and he ended up staying at home all week. He wanted to work from home, after all it was his physical ability to travel that was affected not his ability to do his job, but his boss said no and that if he was sick enough to be at home then he was too sick to work at home.

Hubby accepted that maybe he did need to spend some time recuperating anyway. He only gets statutory sick pay but if you’re ill you’re ill and he couldn’t have coped with the commute, so he stayed at home and waited from the drugs to kick in. By Friday he was feeling quite a lot better, a combination of rest and stronger drugs. He was due back at the hospital on Monday morning for his first weekly blood test (he will needs bloods every week now for at least two months while he settles into taking mercaptopurine) and he called work to confirm he could work from home before and afterwards so as to minimise the time lost working, they said no. They said he had to come in afterwards, and not only that but he had to make up the time by working an extra hour on Monday, Wednesday and Friday. This means I will finish work, pick up the car, pick up munchkin and get her home and sorted and into bed on my own. Meanwhile hubby will have to work late then get a later train home, I won’t be able to get him from the station as munchkin will be tucked up in bed, so he has to wait for a bus which will then take 25 minutes to get him home. Hubby’s journey doubles in length, my journey home is much more difficult and everyone is generally worse off.

The worst of all this is that Hubby needs weekly blood tests, because he has a chronic illness which makes travel on public transport extremely difficult. His work are trying to make that journey more prolonged, and are adding to the stress of it, therefore minimising his chances of a quick recovery.

They are insisting he comes into the office during bad periods of illness. When he was diagnosed back in March they asked what they could do to support him, hubby just asked for the ability to work from home when his symptoms were bad. Since then he has continued to struggle in, I don’t think he has ever decided to work from home when his symptoms were bad, only if he had a hospital appointment in the middle of the day, which is rare. Instead he just took a change of clothes and struggled on, even on days where I tried to get him not to, he just kept getting on with it.

And now he is facing comments such as this, from colleagues, the HR Manager and the HR Director:

“Oh but a couple of weeks ago you said you were feeling much better”
“I know a couple of people with colitis and they seem fine to me”
“Have you tried eating more healthily?”
“Yeah I know how you feel, I get a bit of IBS sometimes”
“Have you tried cutting out wheat?”*

The first comment was from the HR Manager. It just seems like they think hubby’s making it up or over-reacting. Because, you know, we can really afford for him to be on minimum pay for five whole days, what with Christmas coming up and being in the middle of a recession and everything.

Since his diagnosis in March this year hubby has sent them all the relevant information on the condition, its treatment and the drugs he is taking, but they still make comments like the ones above.

He has now written them a very positive and well worded email explaining again why the condition makes travel difficult and reiterating that reasonable adjustments need to be made. Fortunately we discovered over the weekend that the good old NACC has produced a Guide for Employers, this seems to cover a lot of what they need to know about what the disease is, and suggests the reasonable adjustments that should be made.

All we want is for Hubby to get better and back to normal, this requires minimum pressure and stress and some support from his employers. In a household with two chronically ill parents all this has quite a major impact. My workplace has always been so brilliant and supportive so it has been a blow to realise there are less than compassionate people out there in positions of power.

* Please feel free to leave a rant in Comments.

Being pregnant

2008-11-14T09:08:00.002Z

I am so fed up with working in London. I was going to dedicate today’s entry to complaining about the commute, but then I read Hillary’s blog and decided to cheat and recycle a very old entry from the blog I kept when I was pregnant and still living in a rented flat in East London.

When I wrote this blog I was still suffering from active UC, but I concentrated more on the pregnancy side of things when writing. Then out of the blue one day a girl called Caroline contacted me, she was pregnant too and also had ulcerative colitis. She had picked up that I had the illness too and persuaded the site’s administrators to put us in touch. Caroline introduced to me to Lottie and the rest is history.

So this one’s for the newly expecting Hillary, just in case it helps!

Week 6 - Monday-Thursday
Mon 1st August – Thurs 4th August 2005
Week six starts fairly well. My tiredness doesn’t seem to affect me too much on the Monday. Though Tuesday was fairly dismal – the alarm didn’t go off so the morning was a mad rush – work dragged and we had to go out for a friend’s birthday after work. Let me tell you the LAST thing you wish to do after a full day’s work when you’re pregnant is go out for drinks. The reasons being:
1. You can’t drink anything but orange juice. If you happen to be going to a trendy bar in Shoreditch that orange juice will only come in a small glass and will cost you about £4.
2. You are absolutely shattered, completely exhausted. This makes it near impossible to be your usual witty glittering self and you end up feeling like a boring whinging blimp in the corner.
3. Your tolerance levels are at ZERO. Everything from the surly bartender to the price of peanuts gets right up your nose and pisses you off greatly.
4. Everyone else can drink and it’s not fair!
We stayed for an hour or so before heading home to beans on toast and an early night. I am starting to worry that pregnancy is going to turn us into Mr and Mrs Dead Boring.
Wednesday is slightly better. My colitis is playing up quite badly but I am refusing to let it bother me. Even when I have to sit down twice on the way to work, I just resolutely keep trundling on and buy myself a Cadbury’s fudge bar as a reward.
My friend Lang emails me to suggest a lunch of square pies at Spitalfields market, so I leave my healthy wholemeal pasta and tomatoes for Thursday and enjoy a fabulous steak and kidney pie (red meat – lots of iron!) with peas and gravy. It’s good to see a friendly face and have a chat about my anxieties. After lunch we take a walk around the market and I find two sweet little pictures of London – one of Trafalgar Square and one of St Paul’s – for 20p each. Lang buys them for me as a congratulations present. He also buys one of the Royal Albert Hall for his new girlfriend and goes a bit pink at the ears. Bless.
On Wednesday evening I convince Hubby to do some yoga with me. I’ve printed off several moves that are supposed to be good for you during pregnancy and actually go some way to making birth easier. But right now the actual birth seems like a million miles away over a long and complicated assault course. Yoga is also supposed to be relaxing which sounds good to me as I feel so wound up. The yoga is fairly difficult to master though and this pisses me off slightly, though I vow to keep trying.
On Thursday I begin to experience scarily drastic highs and lows. One minute I feel utterly normal and happy and begin to wonder if I am actually pregnant at all, the next minute I literally have to peel myself off the floor to carry on and I feel as though a sticky black cloud is surrounding me. My anxieties have also increased tenfold and I am constantly fearing the worst: will I miscarry? What if the baby has already stopped developing and is just dead in my tummy? What if we get to the first scan and there’s no heartbeat? What if the baby is deformed or handicapped? What if it’s at risk of downs syndrome? What if the doctors discover some strange blood disorder that have during a routine checkup? How the hell are we going to afford this? Is this the wrong time to be having a baby? Will be a crap mother? What’s that twinge in my stomach? Will I ever stop weeing? What if what if what if…It goes round and round in my head all day every day.
Our holiday is only a month away now. But whereas before I was looking forward to it greatly, now it feels like a drain on much needed finances. And I was most looking forward to long leisurely evenings sitting outside our tent sipping on wine! Now I have long evenings sipping caffeine-free tea and mineral water whilst overcooking chicken on the bbq to ensure I don’t get salmonella poisoning. Don’t get me wrong, I don’t resent the little tyke inside me for keeping me apart from my beloved wine, and I am not an alcoholic, but I find it hard to kick back and relax fully without the aid of a little chilled dry white wine. Plus we usually have bbq’d bananas when we go camping. But I have developed a serious aversion to them – the very sight of them makes me heave.
My day is lightened momentarily when I discover that my lunchtime haunt – Whitechapel Library – is closing for refurbishment and thus all the books are being loaned out until December! This is marvellous as it means I can stock up on pregnancy guides and I have four months to peruse them! And there’s still Camomile Street Library and the Women’s Library to go to while it is closed. Yes, I am a nerd, but a happy nerd.
On Thursday evening the blender overheats and konks out whilst I am making humous. Ordinarily this would mean a) fish out the guarantee and march back to shop demanding replacement, or b) buy a brand new blender even better than the original with more functions in retro 50s pink. But this time it meant the end of the world and further proof that we are unfit to become parents. If we can’t look after a blender without killing it how will we look after a baby? And if we can’t even afford to replace a blender how can we afford a baby? And if we can’t actually use the bloody blender (when it was working) without Her Downstairs coming up to complain about the racket, how are we going to survive the influx of complaints regarding a screaming baby at 4am? It is quite clear that we need to win the lottery, move to a detached house in the country with hired help and a nanny…oh, and buy a new blender if there’s any cash left over. I’ll buy a lottery ticket first thing tomorrow.
Week 6 – Friday-Sunday
Fri 5th August – Sunday 7th August 2005
On Friday I wake up feeling a little more like my old pre-pregnant self. I am a natural born organiser and I suddenly get a grip on reality and start making financial plans for the future, using all manner of complicated spreadsheets and charts. By midday I have worked out a Four Year Plan. I am dead pleased with myself and my excellent planning and decide to reward myself with a tuna sub from Kelly’s. But they have none left and in an instant the world is poo again. Welcome to pregnancy – one minute you’re in spreadsheet euphoria, the next you’re in tuna hell.
I spent about twenty minutes in Whitechapel Library stocking up on, among others:
* Pregnancy for Dummies
* Yoga in Pregnancy
* From Here to Maternity – A memoir
* Healthy Eating in Pregnancy
* The Rough Guide to being Pregnant
* The Jane Austen Book Club (spot the odd one out)
I would have stayed longer but I seem to be sweating like a PIG and I simply have to get out of there and get some air. What is going on with my body temperature? And while we’re at it what the hell is happening to my boobies? They are huge! And they hurt. And I have little raised bumps all over my nipples. Actually I looked this up in one of the many books I have acquired from various libraries and apparently these bumps are called “Montgomery's tubercles” and they are something to do with breastfeeding. Oh God.
I survive the rest of the afternoon quite happily playing Weboggle instead of working. I don’t seem to be as tired today, this is a good thing. But after a while I begin to wonder why…am I not really pregnant?
I spend Friday evening watching the Big Brother eviction with Fairy. She bought me a book of recipes for non-alcoholic cocktails! Methinks she knows me too well and realizes how much abstinence from wine is driving me mad! I keep reading all these stories about how women go off the idea of alcohol when they’re pregnant but I could still really do with a large cold glass of sauvignon. I haven’t had any nausea or cravings actually, wonder if I will?
The weekend was a blur of swimming, yoga and visits to family and friends. We had a lovely roast ham at Bee and Jam’s on Sunday night, washed down with a few naughty cans of diet coke. Bee bought me What To Expect When You’re Expecting and a roll-on cocoa butter moisturizing stick from the Body Shop, it’s supposed to be good for stretch marks apparently, but whether it works or not doesn’t matter because it smells just like chocolate so it does it for me.

Stumbling on

2008-11-13T12:17:00.001Z

Hubby continues to feel extremely ill. He is now in the state I was in early this year – at home, unable to leave the house, losing loads of blood, thoroughly worn out, unable to eat and up all night in the bathroom. Still, at least the bathroom is now gorgeously renovated and has under-floor heating, it is no longer the spider-infested building site with no ceiling that I suffered my darkest hours.

I’m not quite sure how to handle it all. I am already in limbo land myself, not knowing what the future holds for my body. I am fighting to maintain a house, a home, a job and a family. The past two years have contained so much sickness and stress and bad things. And now the person who keeps me sane has been knocked sideways once more by this stupid horrible illness. Without wanting to sound like a petulant child, but I will anyway, it’s not fair!!

How can one family be put through so much?

I suppose there are small mercies. Firstly, at least I am well, which means there is no bathroom situation, if Hubby needs to go he can, without having to worry I am already in there (or if I am I can get out quick!) Secondly, the house is more or less finished, and the bits that are not don’t impact on us in a major way, having the bathroom complete makes a huge difference. Thirdly, we don’t have to travel anywhere over the next couple of weekends, and then when we do it’s to go away for our anniversary which I hoping will be a wonderful relaxing time. And of course there’s always munchkin, who keeps us cheerful with her funny little ways.

Despite everything we still feel hopeful for the future, this Christmas will be a milestone, I know it will be.

Fourth infliximab

2008-11-12T09:07:00.002Z

It’s been a while yet again, life has been busy and my health has been really good, I am almost scared to jinx it by writing about it!

I had my fourth infliximab infusion on Friday, something I am getting very used to. The nurses are familiar to me, it seems to take less time as there’s less obs to do before and after, and they usually let me go immediately rather than sitting around for a couple of hours for observation. Some of the other patients are now familiar faces too, some having blood transfusions, one having the same as me, some on cancer drugs and others on various other medications. We’re a mixed bunch of all ages.

I usually get hooked up and sit and have a diet coke or a cup of tea whilst reading a magazine or whatever book I have on mosaics from the library. I used my IV time as a rare opportunity to sit and be quiet. My life is a constant fast lane of parenting, working, commuting, cleaning, cooking and visiting parents, so it’s nice to sit still.

Afterwards I am usually quite tired, though less so this time, and a little light headed, so I spend quiet time at home catching up on housework or mosaicing with a film on in the background. My mosaicing has been a great source of escapism for me these last few months. While I can’t find my place in the world yet, caught in a strange limbo between well and ill, I can at least get on with something that thoroughly absorbs me.

Whilst my health remains good thanks to the infliximab, Hubby’s has taken a downturn. The steroids have never seemed to work all that well for him and lately he has had another bad relapse. He will be starting on mercaptopurine in the next couple of weeks. We have our fingers crossed this will work.

My goal is for all of us to have a healthy Christmas, last year I was so ill I couldn’t eat and spent Christmas day on the sofa feeling miserable and detached. This year I want all of us to at least be 90% healthy!

I'm back again..again

2008-10-02T09:14:00.002+01:00

You know how it is – you leave your blog for a few weeks and it gets harder and harder to come back. But the best thing to do is just to get stuck back in – and with Lottie back blogging again I have an incentive!

The infliximab continues to work wonders for me and I feel 95%well for the majority of the time. I had a consultation with the hospital surgeon’s registrar the week before last (she’s lovely) and she basically told me that infliximab is great (well I knew that) but for different reasons to why I think so. She said that it generally gets patients who are very ill into a kind of drug induced remission for long enough to get them off the steroids, which makes operating easier. So in plain terms I am putting off the inevitable. I didn’t feel too great after that little consultation, even though really she was just confirming what I already knew, deep down.

However, there could always be remission just around the corner and at the moment I am well enough to be very hopeful, so for now at least I am in a good place mentally and physically.

I am taking advantage of this healthy period to lose some of my steroid weight – I have been roughly following weight-watchers and have lost about 3 or 4lbs so far with sensible healthy eating, lots of water, fruit and vegetables. I have about another 7lbs to lose I think before I will be happy in my skin. I am determined though – it’s our 5-year wedding anniversary at the end of November and despite the credit crunch and a looming end to our fixed rate mortgage we’ve booked a lovely hotel for the night. Our room has its own private garden with a hot-tub and there’s no way I want to be feeling podgy!

I still find it odd most days, being so suddenly well again. And it is hard sometimes when people seem to forget I am constantly fighting a chronic illness, I still spend a day in hospital every 6-8 weeks for my infusions, I still need blood tests every 6-8 weeks, I still attend regular appointments with my consultant, and irregular ones with the surgeon. I feel I am constantly pulled between a two conflicting lives – well person, employee/sick person, patient.

It’s fair to say that this last bout of illness has been the one with the most profound effect. I’ve had relapses all my life since I was about 21, and I’ve been hospitalised twice with serious symptoms. But this last year has been the most prolonged period of illness I’ve ever had and it is a period of my life I shall never forget.

But for now it is time to move forward to the next stage, be that remission, surgery or just the status quo.

And I shall start that next stage right now, with a cup of tea…

Wordle

2008-09-25T12:42:00.001+01:00

Tee hee! This is fun....

Things I learnt this weekend

2008-09-07T20:07:00.003+01:00

1. Floating shelves are really poo. Realistically they can hold nothing more than a couple of pretty looking things. If you dare to place a heavier object upon them they just tilt forward so as to give you the impression of being on a leaning ship. They are also liable to drive one's husband to alcohol after three hours attempting to get up one shelf to his wife's exacting standards. He did an excellent job in the end of course, with a bit of tweaking, filling and padding, but we'll be taking the ones we bought for the bathroom back to Homebase. And I'll just have to get used to form over function and put it down to experience.

2. Two-year-olds like peanut m&m's.

3. Playing Wii Sports with old friends whilst glugging copious amounts of wine and scoffing minstrels until late into the night will give you a headache the following day. But it isn't half a lot of fun.

4. Slugs are scary (munchkin says so.)

5. It was a really good idea to marry a man who will happily get up hideously early with a toddler on a Saturday morning and let you lie in for another two hours because you were silly enough to come to bed at 1am.

Irresponsible

2008-09-05T23:21:00.002+01:00

Why is it that the majority of the other parents at munchkin's nursery are organised enough to buy party bags filled with gifts for every child in the nursery when it's their kid's birthday? Am I the only mum completely incapable of organising such generosity, let alone affording it? And what's worse, it is wrong that I don't particularly care? Or that every time we receive another little plastic bag filled with little plastic toys I just think of the ozone layer melting down around our ears?

And why is it that I like nothing more than when munchkin and I lie on our tummies face-to-face on the rug and eat a milky-way pretending it's brocolli*?

And is it bad that it's nearly midnight, I've drunk the best part of a bottle of wine and I have a plastic bag on my head while the henna takes effect?

Is it wrong to wish I could just stay up all night watching Sex and the City?

I love my life, my health, my family, my husband and my beautiful daughter. My house is clean, it's generally tidy**, I am good at my job (I am paid to be organised and efficient), I try my damnedest to be a good mummy, I cook, I commute, I work, I get on.

But sometimes it's nice to think that maybe I could have a few hours off. A few hours to be totally and utterly irresponsible. Nice thought. The extent of my rebellion tonight though might extend to another glass of wine, half an hour of Sex and the City, a nice hot shower (to wash out the henna) and a late night.

* because to a 2-year-old that's hilarious.

** just don't look in any cupboards.

Tree hugging

2008-09-03T09:03:00.001+01:00

This is me hugging a tree at Kew Gardens on a work away day last week. Quite significant as previously I wouldn’t have been able to go along (the commute would have been too far and I wouldn’t have been able to walk around the gardens.) As it was I had a grand day out – there were only a couple of moments where I had to rush to the loo, but it was more a precautionary measure than full scale urgency.

With one week and one day to go until my next dose I am feeling the need for my next “fix” of infliximab. Life is careering along at such a pace that I can’t believe I ever managed to put it all on hold while I was so sick. Did I really have the time to sit at home in groaning agony watching repeats of Homes Under the Hammer?

Well I don’t want to do it again that’s for sure. I know in many ways my fate is sealed: no matter what happens this year, or even next year, at some point in the not so distant future I am going to run out of options. I am in remission right now, semi-remission anyway. A drug-induced and drug-maintained semi-remission. But when the drugs are gone what do I have left but a set of rotting intestines and a box of paracetamol?

I’m not trying to be pessimistic, just realistic. I knew that infliximab if it worked, which it did, would give me a period of wellness that would stay with me forever and influence my future decisions regarding my ulcerative colitis.

For now though I shall enjoy my freedom while I can. I shall enjoy the walk from Shadwell to work*, the lunchtime outings to the library, walking down to Tobacco Dock to wander around aimlessly, and running around the local football pitches with munchkin.

* As much as one can enjoy Shadwell.

My mosaic

2008-08-28T13:50:00.002+01:00

Ta daaaaa!

The workshop was fabulous. I now have a new obsession in mosaicing. I was the first one to cut my finger and the only one to bleed excessively over my tiles. None of this stopped me though, I just wrapped my shredded digits in tissue and continued with my nipping, snipping and glueing.

In other news my tummy has let me down today - just as I was confident enough to leave my spare jeans at home too. I'm hoping it's just the same bug that munchkin has right now, but I am worried. I may leave work early today to get home and destress.

My next infliximab infusion is two weeks today and I am now on only 7mg of prednisolone. Apart from today life continues to be grand. I can't believe how life has changed in a period of less than two months.

Splattercated Dior

2008-08-22T08:18:00.002+01:00

On Friday evening I discovered the whereabouts of my make-up bag which had been missing since Wednesday; it was splatooned across the road outside my mother’s house in a thousand gazillion pieces.

It turns out hubby had put it on the car roof whilst wrestling munchkin out of her car seat to drop her at my mum’s, then drove merrily off to the station forgetting it was there. I lost my birthday dior eyeshadow set, my touché éclat, my mascara, powder, foundation, blusher cream, tweezers, eyeliner, magnifying mirror…everything. It was pure devastation, some of my girlfriends nearly cried when I told them the news.

Not being the ultimate girly girl I don’t wear a lot of make-up and I certainly don’t spend a lot of time or money on buying the stuff. So to suddenly have the whole bloody lot splattercated was an expensive inconvenience. I managed to buy a cheap pair of tweezers then with the replacement of my foundation and powder (£26!!!?) I got a free gift which included a new make-up bag, some mascara, and some lip gloss. Hubby’s buying me some new touché éclat after payday. Plus, in the spirit of Dunkirk, my girlfriends have donated eyeshadows, shiny bits, creams, potions and other cosmetic delights to my cause.

It’s funny, for ten months I was too tired and sick to think much about putting on make-up and now I am wearing it every day. Its nice to be normal.

Speaking of normal. Now that I can go out in public without pooing myself I have booked myself onto a mosaic course this weekend. I booked it some time ago and have been eagerly anticipating it ever since. So on Saturday and Sunday I shall be hauled up in a studio in London making a mosaic and being taught the basics of glass-cutting, grouting, mosaic techniques and gluing. I am very excited. No doubt pictures will be posted here of the results of my efforts.

Right now, on a less artistic note, I need to go and pretend to be enjoying work…

To blog or not to blog

2008-08-15T09:32:00.001+01:00

I am getting rather rubbish at regular updates recently. This is partly down to my lack of time but mostly to my lack of things to whinge about! I have been thinking a lot lately about my little blog and whether I should continue it whilst I am so well.

I certainly never started out intending to write a blog about living with ulcerative colitis. I have been keeping online journals since the beginnings of Diaryland back in the late 90s. I moved to Babyworld and kept a journal there whilst I was pregnant with UC, that’s how I met Lottie. Now I use this blog and Flickr* to communicate with the world. When I started this blog it was just to write about my life – being a mum, renovating our house, negotiating life generally. Two posts in though I started to get my UC symptoms back again and so gradually this blog evolved into what it is today.**

And then, suddenly, after a long period of chronic illness, I am back to health, for however long that might be, and everything is different somehow.

But that’s ok, UC is still there every day in some way; be it in my mind, the strange gurgle in my tummy, the NACC News through my door, the steroids after breakfast, or the IV in my arm every few weeks. This blog is about life and motherhood and living and working in the shadow of chronic illness. So I will continue to enjoy waffling on. Trust me, I have a lot to waffle about.

* my new account with the same name as this blog is currently empty, watch that space though…

** a one-woman whinge-a-thon on the subject of bowels.

What Happy looks like

2008-08-09T23:47:00.002+01:00

*fuzzy*

Daydream Believer

2008-08-06T08:10:00.002+01:00

Two infusions of infliximab down. Yesterday it was time to see my consultant for a follow-up. I am pretty expert at my visits to outpatients so I went well-prepared: plenty of change for a good two-hour slot in the carpark, arrive early to get a space, packet of minstrels, a diet coke and a good book to keep me occupied whilst waiting (clinics usually run over an hour late.)

Arriving at the hospital I noted how my whole attitude felt altered. Usually I would be down and despondent and generally very grumpy but instead I felt unusually buoyant. Maybe my positive attitude had an effect as I was called in within five minutes; I hadn't even had a chance to eat more than one minstrel. I saw Doc C’s registrar, usually a pretty uncommunicative bloke who doesn’t believe in eye contact, who was unusually helpful, looked at me when he spoke and even, gosh, said hello.

He asked me how I was getting on, I told him great. He asked me how may times I was going to the loo*, I told him about three. Blood? Nope. Mucus? Nope. Pain? Nausea? Joint aches? Nope, nope and nope.

Would I like to try coming off the steroids……YES!!!

And so I am now on 8mg, going down 1mg every fortnight. After three and a half years of steroids could I finally be waving them goodbye?

Doc C even came in to say hello and ask how I was. They told me there was no need for me to have the horrid short synacthen test either. So no pokings and proddings in my immediate future.

If somebody had told me three weeks ago that this is how my appointment would go I would have assumed they’d had a bowl of Mad for breakfast.

When I switched on my car radio on my way out of the hospital carpark they were playing Daydream Believer. Maybe this time, after three and a half years of constant relapse and nine solid months of illness, I can allow myself the dream that it may be over. For now.

* after over ten years with UC this is pretty much on a par with somebody asking how many cups of tea I might drink in a day, and no more embarrassing.

Positive notes

2008-08-03T11:14:00.002+01:00

I am feeling negative. There are too may things worrying me/getting me down. I don't know if it's because these things are genuine cause for worry or if I am transplanting my worries about my usually crappy health towards other things. i need some perspective. Things I feel positive about:
My loving family
My fabulous friends
Hot baths
Cosy duvets
Warm evenings
My first home-grown courgette
Chocolate biscuits dipped in tea
Not being in hospital
Infliximab
My little house
My new shed
Walking
Baking
Reading magazines
Mosaic workshop at the end of August
My ability to get things done
The purples flowers in my window boxes
Lillia
My husband feeling better

Infliximab again...and Lottie

2008-08-01T19:03:00.003+01:00

A whole week has passed since I last wrote. This is not because I have abandoned my blog in favour of skipping about being healthy, though my absence is not unrelated to my new found health.

No the reason is that since I have been feeling significantly better I have been making up for lost time and energy with gusto. I have the focus and the stamina to throw myself back into work, so at lunchtime I am more likely to be eating a sandwich whilst I am working, rather than merely trying to drag myself through another painful and difficult day. In the evenings I am in the garden trimming, pruning, watering, tidying, sipping wine, making dinner, dusting, organising, mosaicing: all the things I haven't had the energy or the will to do.

So actually, reading that last paragraph, I realise that my absence has actually been down to me skipping about being healthy. Hmm!

Today was my second dose of the infliximab nectar - another pleasant few hours chatting away to the old ladies in the chemo day unit and flicking through gardening mags. Then straight afterwards hubby and I dived into B&Q to stock up on bark chips and compost then set to work on finishing off our front garden. Oh and I planted up all our window boxes and got rid of all the weeds too. Then I tidied the house. Oh, and hoovered. And cleaned the bathroom...and disinfected the outside drain, emptied the hoover filter and mopped all the floors. Two weeks ago if I had an afternoon off I would have slept, or sat on the toilet, or just stared at the TV.

To have been so unwell and to feel so healthy again, however temporary it may be, is a privilege in my eyes. I take an enormous amount of pleasure in walking to the library in my lunch break, running around the garden with munchkin, walking from Canon Street through the city without having to stop at M&S and Fenchurch Street to use the facilities. Even just getting to work on time, without having to then spend half an hour in the loos sorting myself out. I wish I was a better writer to I could convey more strongly and more eloquently how I feel.

Enough about me though. There are two others to mention:

Lottie had The Op last Friday. I've been paying attention to the updates in her blog made by her husband and I have had a text or two. I've really been thinking of loads and I can't comprehend the enormity of what she is going through. But she will get through it, and I know she will come out the other side a happier person. Get well soon Lottie xx

Hubby is still on 30mg prednisolone daily and is getting better but is still not in remission. The docs have decided to try him on a drug called Mercaptopurine, which I think is the same as azathioprine. I wanted him to wait a little longer before taking it, just to give the steroids another week, but he is determined to start. Hopefully they will work for him and he won't be allergic like I was. Fingers crossed. If they do work we will both be healthy for the first time in a year and I can't tell you what that will mean.

Right - the sun is well and truly over the yard arm so I am off to join my mother in the garden for a glass of chilled white wine and a bowl of strawberries (which thanks to infliximab I can now eat once more...)

Small steps forward, small steps back

2008-07-24T20:00:00.002+01:00

The last few days have been quite incredible. There was the Ali before Friday and the Ali after Friday. Like a line was drawn down the page of my life to separate the chapters. The difference has been astonishing.

My work colleagues are astounded, my family too. I don't know if anybody (except hubby) really realised how ill I was until I started to get better. Gone is the sallow complexion (though my pasty Scottish skin remains...) and the lack of energy and concentration. Instead they have the old pre-UC Ali - smiling, full of enthusiasm, knackered only from the sheer amount I attempt to pack in. I sat today for four hours working on text for a report. I couldn't have done that a week ago.

When I am really ill I am torn between two lives - the ill me and the me that puts on a "well" front in order to get on with work, parenthood and life in general. But illness always clashes with work, parenthood and life and that is very hard. Now I am getting well I don't have that clash and I am amazed at what I took for granted before I had a relapse!

I can handle life, I can handle parenthood, I can handle work. Because I don't have to handle UC.

This was the whole point of ifliximab - to buy me some time being well again, to remind me that I am still here, behind the intestines, the pain, the steroids, the poo and the exhaustion, here I am! I was here the whole time. Who'd have guessed it.

No matter what happens I know now that my perspective has forever changed. In the deepest darkest recesses of illness I will always remember what health feels like, and how it is worth more than anything and is therefore worth any battle to achieve.

This morning was a bad morning, I had a failry major attack and had to find sanctuary in the loos in M&S. This was a minor setback though as I had the energy to deal with it and I felt fine afterwards. I am still positive.

Forgive my slightly nonsensical ramblings, I am in a strange (but good) place!

Walking

2008-07-22T21:36:00.002+01:00

Today I walked to the bathroom.
Today I stood for ten minutes in the shower.
Today I walked around my house looking for socks/baby wipes/mobile phones.
Today I walked across the platform at Island Gardens.
Today I walked from the station to work.
Today I walked from work to the library (15 minutes away) and back again.
Today I walked from my office in Aldgate to the station at London Bridge.
Today I stood and waited for my train for fifteen minutes.
Today I stood up for a pregnant woman on the train.
Today I stood all the way home.
Today I ran with munchkin up the driveway to the house.
Today I walked.

Minor miracles...

2008-07-21T21:13:00.002+01:00

Soooooo.

I had my infliximab on Friday despite the continuing presence of the strange lump on my leg. It was touch and go - the nurses weren't convinced but the consultant himself (I am honoured indeed) came down to have a look and said I was good to go (well not in those words exactly..)

I spent five hours with some nice old ladies being treated for cancer (one had leukimia and the other I'm not sure) and another girl roughly my age who was getting infliximab too. I read my new mosaics book a bit, and browsed through a gardening magazine (I now know how to stop slugs munching my courgettes.) I was knackered afterwards and was in bed by 9.30pm.

We went up to hubby's mum's for the weekend in Norfolk, which was pleasant and pretty uneventful. Notice how I say uneventful? Yup. One attack on Saturday morning, the odd twinge here and there but otherwise...well...nothing.

Then last night...I FARTED. I haven't farted in about nine months as a fart is usually just..well..I won't go into detail but let's just say it's not safe for me to do so. Today was my day with munchkin and for the first time in as long as I can remember I had the energy to cope all day long - with the endless running around, the dashes to get her to the potty, the many wet trousers piling up*, the stupid lorry driver this morning**, the shops, the chaos of old ladies*** at the post-office, the tantrum at the Noddy ride in the mall, walking, running, hopping, jumping, play dough, hide and seek and Balamory. I coped with it all, I didn't stop, I didn't need to. It was weird.

I won't tempt fate by writing anything just yet, but are you thinking what I'm thinking? Hmmm.

* not mine, munchkin's...

** he turned his lorry into a narrow street, on which I happened to be driving, pulled onto my side of the road to get past parked cars, nearly squished me, forced me to move my entire car onto the pavement so he could get past, then stopped, rolled down his window and shouted at me. Yup. Couldn't make it up. It's like he landed from Planet Moron on a mission to be the most moronic being on Earth. Nanoo nanoo...

*** not sure if this is actually the correct collective noun for a group of old ladies.

Breaking the rules

2008-07-17T19:42:00.002+01:00

I've had a bad day.

My tummy is sore and bloated because, get this, I haven't been to the toilet (not full blast, heh) in two days. This makes me feel fat and uncomfortable. My joints are aching. My eyes are dark. My Leg Lump hurts like hell. Hubby is unwell so I am really worried about him* and work is utterly totally absolutely manic, made worse by my unscheduled day off tomorrow**. Add to all of this two daily trips on the DLR (don't get me started or I will never stop) and the fact that my journey home this evening took over two hours thus meaning I missed munchkin's bedtime altogether and didn't get home until 7.15pm (at an extra cost of £3 I might add) and...well...it's been a bad day.

So I broke some rules to help me through. First, I took my penicillin with a can of diet coke rather than water (rebel rebel), AND I didn't even wipe the top of the can in case of rat wee. Then I sat on the station platform, on the floor. There were no seats so I ignored my own personal rule of never doing anything too weird in public and just plonked myself down. Now that I am finally home I am eating cheese on toast for dinner, thus ignoring the five-a-day rule totally. I am washing it down with wine, so much for not mixing alcohol with penicillin, and I am not going to do a shred of housework, tidying or washing up.

Infliximab tomorrow, unless my body decides to treat me to a dose of pneumonia between now and then.

* Hubby update - After trying to get through to our consultant for a week (he called Monday through to Friday twice a day and left messages explaining how ill he was and asking for advice) he eventually managed to speak to the specialist nurse when she returned from leave the following Monday. Five days later he finally picked up a prescription with the advice to go back up to 30mg prednisolone for the time-being. It's been stressful. The mornings are worst. Hubby is knackered having been up to the loo all night and then we both suffer bad symptoms and have to play toilet tag. In the meantime we have to get ourselves ready for work and get munchkin up and at 'em, without letting on that we are in agony and extremely unwell. It's very hard at the moment.

** Though I will be dragging my laptop into the treatment room.

Infliximab in two days...ish

2008-07-15T11:39:00.002+01:00

So much for the countdown to the first infliximab infusion today. I am now at home working. Basically the lump on my leg could be infected and I have to take a course of penicillin over the next two and a half days to ward of any risk of infection, then I can start the treatment on Friday. To say I am somewhat disappointed is an understatement. I have been gearing myself up to this and preparing for it. Now I have had to quickly switch from patient mode to work mode and spend today working from home, rather than spend it attached to a drip.

What gets me most is how utterly ridiculous it all is. I've never had a lump on my leg in my life, never had a cyst in my life. Yet on the one week when it is really important that I don't get one, I do. What the hell is going on? My body really does have it in for me. Does anyone remember the Numskulls in the Beezer? Well I reckon my Numskulls are evil.

Still, at least I get to spend the day with Jimmy Stewart on in the background. Small consolation.

Infliximab in 12 hours..ish

2008-07-14T19:23:00.004+01:00

Went out last night with my friendlies and had a lovely time and too much wine, even felt a bit sick on the way home! But at least it was a lovely reminder why a night in with a glass or two of chilled white wine, a hot bath and early to bed is so much better - and has less ill effects the morning after.

Today I took munchkin to the doc's as she's been out of sorts and complaining of a sore tummy. Intitally we were worried that she was just complaining about a sore tummy because she hears and sees us dealing with it all on a daily basis*. But then yesterday afternoon she became really distressed and it was very hard to calm her down. So this morning I took her to the doc's to get her looked at. She is slightly constipated, probably to do with recent potty training, and had a slightly raised temperature. I stayed at my mum's for the day as the weather was hot and she has a lovely big garden, so munchkin got to run about naked in and out of the paddling pool. But by afternoon she wanted to be indoors sitting or lying down and by the time we got her to bed her temperature was much higher. Bless her. It's awful when she's sick.

While I was at the doc's I also got him to have a look at my leg. I have, it would turn out, developed a cyst - a painful lump under the skin. The doc was slightly baffled and had to get out his Bumper Book of Weird Lumps and Medications to check a few things out. He thinks it may be related to having UC or being on steroids and he gave me a prescription for penicillin, but I am not to get it yet, instead I have to wait and see if it gets any worse or doesn't get any better. As I start infliximab tomorrow though I am going to get a quick second opinion from the nurses at the hospital. Typical of my body to present something annoying like this just at the wrong moment.

I am apprehensive about tomorrow, though I am looking forward to being able to sit down and read for a good few hours. I have packed in my bag:

Once Upon a Time in the North by Phillip Pullman.

The Kiterunner by Khaled Hosseini.

Weightwatchers magazine by...people who know about fat content.

A Beginners Guide to Mosaic.

Moneywise, a free magazine I got about being wise with, well, money.

A notebook and pen, to record any sudden brilliant ideas for a bestselling novel.

My baby record book to update with stuff about munchkin.

Some recipe and health books about food for toddlers, and also about food for IBD.

Handcream from Lush.

Rescue Remedy.

And, as always, spare jeans and knickers.

All I need is a pool, a sun-lounger and a vodka and mango juice and I could fool myself I was on holiday...

* When I say "we" I have to note that hubby is the more dramatic. I can happily have a UC "contraction" quietly, whereas hubby favours a more hand-on-brow groaning method...

Starting infliximab in 48 hours..ish

2008-07-13T16:25:00.003+01:00

On Sunday morning I am off to the hospital for my first dose of infliximab. I have two major feelings about this: 1) This HAS to work as I must be due a period of relief after 9 months of feeling like crap, and; 2) Won't it be lovely to sit down and read for five hours.

I have a bag ready containing a book on mosaic, weight-watchers magazine*, two books, a notebook and munchkin's baby record book to fill in. I am feeling quite hopeful. Though I hate myself for allowing myself to believe even for a second that it will work. Time will tell.

To celebrate this new era of treatment, and to wave goodbye to alcohol for a wee while, my two bestest friends** and I are off out tonight to a secret location in "Essix" to drink wine and whinge about men/intestines/work/other friends/the weather/steroids/cake/fat thighs/crap hair etc. Or as hubby puts it, "waa waaa waaa waa wa". We don't get to go out often any more, what with living in different counties and life getting in the way, so I am really looking forward to a good night.

* damn steroids, damn cakes.

**

Grumpy old woman

2008-07-10T15:06:00.003+01:00

Bee, me, and Clair in our fabulous wellies

After two weeks away from the daily slog of commuting and changing my underwear upon arrival at work I returned refreshed and ready to take on the world once more. Then I went back to work and realised how ill I am. Going to the loo 10 times a day doesn’t matter much on holiday, particularly when you’re in a huge cottage in the middle of nowhere with three bathrooms and nothing but sheep to see you struggle. But when you are crammed onto a DLR carriage with a hundred other commuters, none of whom know or care that standing up causes you extreme pain and the risk of an attack, it’s a different matter. Summoning up the energy to amble along to the local farm to feed the goats is fairly easy, summoning up the energy to commute for nearly three hours a day and do eight hours of work is harder. My body is worn out with fighting and my brain is absorbed with thinking about how crap I am at my job, how crap my body is, how crap....just....how crap.

On my first day back at work I discovered the DLR will not be running properly until the end of August. It took me two hours to get to work and my journey finished with a lovely big attack as soon as I got off the train at Shadwell, great start. On my second day my symptoms were so bad in the morning that I was incredibly late anyway, to which the DLR only added to. Then on my way home I got caught out halfway across Tower Bridge and had to go into the London Mayor’s building to use the facilities (thanks Boris).

Today? Bad symptoms eventually totally beat me and I am working from home, which does nothing to increase the confidence my boss and my colleagues must have in me, if they have any left.

To add to everything Hubby has also become increasingly worse with his UC too. So much so that he is in the loo even more than me, even going a few times in the night. He’s been trying for three days to get through to our consultant for advice/an appointment/guidance/a prescription, but with no luck. Another fantastic bit of service from the NHS.

One positive though, I guess, is that I took the decision to start on infliximab. I have my first treatment this Tuesday. I should (should) see results in two weeks or so. I just hope it gives me a period of relief, though I am not naive enough to hope for anything long-term. I am far too jaded for that.

Lake Windermere

I is back

2008-07-05T22:13:00.005+01:00

I meant to write before I went, but I was too busy writing lists about what to pack. I've been to Lancashire for two weeks, staying in a stone cottage in the centre of nowhere, surrounded by fields and sheep (and munchkin and hubby of course.) We went up for a two week holiday and to attend our friends' wedding. The whole fortnight was utterly marvellous, I'm so totally ready to take on the world again. Why didn't I consider going on holiday before?! It works miracles.

So I am now back, got back yesterday (an 8 hour drive incuding a near-death almost-pile-up situation on the M42 and 3 hours stuck in traffic on the M25, pfffft) and I am now going to start catching up on blogs and news now I am reunited with my broadband (*strokes modem lovingly*). Speaking of catching up - Number Twos has taken his final bow - I can't believe it but I love that he is too well to write about UC anymore, that is bloody great, but I'll definitely miss him.

And while I'm on the subject of my fellow UC bloggers - today I officially met Lottie and her family. We've known each other for over three years having got in touch via Babyworld when we were both pregnant and suffering with UC. We became friends via email and texts and supported each other through pregnancy, birth, early motherhood, and most of all when our "worthless colons" were taking over our lives. I try not to think about what the last three years would have been like had I not had Lottie at the end of an email when I needed her. Today was lovely, the weather held out - not a drop of rain in sight - allowing us to sit and watch our lovely children playing together and our lovely hubbies kick balls around (for the benefit of the children of course..) and chat. From the first moment we said hello it honestly felt as thought I was greeting an old mate who I had seen the day before, not like we were meeting for the first time at all! Lottie has her op at the end of this month and I know I will be bringing her smarties and chick flicks to aid her recovery.

More soon, but right now wine and bed.

Happy Birthday Mum

2008-06-17T22:56:00.005+01:00

Me, mum, Jen.

My mum was 60 in April and this weekend was her party (we waited for a time when the weather would allow a garden party.) For the first time in ages I actually bothered with my appearance and it felt good, even if I did look like a sack of potatoes. Having a party in the familiar surroundings of my childhood home also gave me a certain freedom that I wouldn't otherwise have in social situations: no toilet panics as I knew I could get there within seconds; no change of clothes to worry about as I had a spare outfit ready in my bedroom upstairs; I didn't even have to worry about wearing shoes as my hippy 70s style outfit didn't require them. Lovely.

The forecast was for rain but a little cosmic order can go a long way and the evening stayed blissfully dry if not a little cold. We borrowed some astoundingly environmentally unfriendly outdoor heaters, which worked wonders, but I need to come up with some pretty decent ideas to offset them.

We had a wonderful evening and got to bed at 2.30am. Something we haven't done since, well, I don't even remember. Even thought we were up at 6am with headaches, playing with Noddy and making peanut butter on toast for a fiesty 2-year-old, it was still good to be reminded that we can still enjoy things. Despite the drudgery of illness day in and day out, we can still eat, drink and be merry*.

* As long as the food isn't tomatoes or anything with insoluble fibre. And the drink is in moderation (yeah, ok...!) And the merriment is carried out within dashing distance of a toilet. Oh yeah, we can party!

Another brick wall

2008-06-11T12:43:00.002+01:00

I received an email this morning...

Dear Alison

I am the adviser who has been passed your recent application for support from Access to Work for assistance with Travel to Work.

Travel to Work support is available where a person is unable to use suitable public transport because of their disability or condition. You have said on your application form that suitable transport is available, you can use public transport and would do so were it not for the cost involved. I am sorry but Access to Work support is not available in your current circumstances; we are unable to assist with the purchase of a bicycle or your fares to work.

If your circumstances change please contact us again.

Yours truly, blah blah blah...

My application was for a small bike costing about £100 max, or help with bus fares of about £3 per week.

Do you know what really gets me about this? I was really honest about the way UC works and how the symptoms affect my day to day life, in particular the commute to work (which is highly stressful and difficult and invariably ends with about 20 minutes in a toilet cleaning myself up.) It's not easy sharing this information with total strangers*. And after all that they tell me that I "can use public transport" and that "support is available where a person is unable to use suitable public transport because of their disability or condition". As far as I am concerned there is no bloody suitable public transport for a person with UC. Show me a train, tube or bus with unlimited access to seats, no other passengers, several working toilets in soundproof booths in every carriage, useable unlocked toilets at every station and with stops right outside my front door and my office. That's what I would call suitable.

I use public transport despite my condition, I use it because I bloody well have to. I use it because I am not going to sit at home whinging on and on about how I can't do anything because I'm too damn ill**. Perhaps if I was less willing to make an effort to get on with my life despite my dibiltating symptoms they would consider my application more seriously?

This all just feels like another "pull yourself together" type stance.

* yes I realise keeping a blog is in effect sharing the same information with total strangers but at least most of them have a common interest, and the idea is to educate and share information here.

** I'll come to work to whinge instead, more people to listen.

Me me ME.

2008-06-07T19:16:00.015+01:00

You know, I'm not all about the ulcerative colitis. You'd be forgiven for thinking that bowels were my only distinguishing "feature" but there are other things you may or may not know. So, to distract me from whinging on and on about blood, poo, incontinence, pain, steroids and white knickers yet again here's stuff I like, in no particular order:

Henna - the smell, the art, the process of making paste, putting it on my hair. Speaking of which, this is what I look like as I write:

If you can ignore the swollen steroid cheeks and the deep dark circles under the eyes you will note the lovely asda bag on my head - this works as an insultaor for the henna currently dying my hair a dark black/blue colour. Should be interesting, and after months of not being able to be arsed with my appearance that can only be a good thing.

Mosaic - breaking up bits of tiles and arranging them into fabulous pictures. I injure myself a lot doing this but I love it.

Beading - this kept me "sane" during my last stay in hospital. When I wasn't be prodded, poked, pricked or fed dodgey sausages I would make things from beads to stop me gnawing off my own toes.

Knitting - I can knit scarves, bags and hats as long as it doesn't involve anything more than knitting, pearling and sewing bits together.

Autumn - my favourite time of year just ahead of winter. I really hate being hot and I really love being cosy, I love the colours of autumn and the "back to school" feeling, which is odd as I hated school. As Tom Hanks once said "...makes you wanna buy school supplies.."

Winter - winter means fireworks, yuletide, snow, rain, cold, cosy nights in, red wine, chilli con carne, jumpers, 40 denier tights, dark evenings and wooly hats. I love it.

Lillia - my munchkin. My perfect gorgeous intelligent little diamond of a daughter. When I was pregnant I knew she would have dark brown curly hair and dark chocolate brown eyes - she was born with both. She is beautiful and perfect in every way.

Hubby - my constant source of amusement, support, love, hope, annoyance, past and future. I have been with my lovely hubbles for six and a half years, married for nearly 5, and I have never looked back since the day he liked the look of my bum going up the stairs of St James's Park tube station.

Duvets - I love being cosy. Munchkin has inherited this from me thank goodness as it means bedtimes have always been heavenly rather than hellish (though she's yet to inherit my desire to stay in bed after 7am.) I love duvets, fires, warmth, and rain on the window outside.

Really really slushy films - I'm talking Truly, Madly, Deeply, French Kiss, Legally Blonde, Shall We Dance, Dirty Dancing, Practical Magic...you get the idea.

Jimmy Stewart - that voice! And The Shop Around the Corner, not to mention Harvey.

Top Gear - now don't get all excited and think that I have some expert knowledge and love of cars that would absolve me from the above film crimes, I don't. I just like Top Gear the programme for its ridiculousness, its presenters and its amusement factor. Love it. Sunday night, glass of wine, Top Gear, aaaaah.

Wine - ice ice cold in a glass direct from the freezer at the end of a very tough day or work and commuting. Luv-er-lee.

Camping - every childhood holiday I went on involved camping in France. I love building a little canvas covered temporary home, I love the dinky little camping paraphenalia, the BBQs, the plastic mugs, the flip-flopping across the campsite to do the washing up or have a shower, the cracking open of stubbies as the fire is lit of an evening..

So there you have it - a tiny wee taster of the other things in my life that don't involve bowels. It helps for me to sometimes remind myself that there's more to this girl than illness and being miserable.

Bye bye steroids

2008-06-03T19:39:00.002+01:00

After a single phone call to the specialist IBD nurse at my hospital (who is now returned from leave) I found myself with a last minute appointment to see my consultant the following day (being today). It's quite amazing what that woman can achieve.

The journey to work this morning was a "two-pairs-of-jeans" affair, made worse by the fact that I was just yards away from the downstairs loo at my office when the attack finally caught up with me. Today's attack was particularly draining and I was wiped out afterwards. Unable to concentrate on the finer points of the annual audit preparation I wasted an inordinate amount of work time this morning compiling my list of Things I Simply Must Mention During My Appointment. Here's what I wrote:
- Worsening symptoms - particularly bad in mornings - walking for more than 5 minutes v.difficult.
- Generally uncomfortable pain with air, mucus, blood and some v.loose stools.
- Feeling ill - almost flu-like, achey with sensitive skin
- Aversion to calcichew - unbearable
- Emotionally/mentally challenging - ill for 7 months, last three weeks particularly hard as felt lack of help/support
- Steroids don't work, time to try something new
- Tried to "self manage" and called for appointment after three weeks with no improvement so not wasting time.

When I stepped out into rain-soaked Aldgate at 2pm I was really quite nervous. I wanted to get the most out of my appointment and I didn't want to come away feeling like I had failed myself by not getting the answers I desperately wanted. For so long I've just pootled along feeling like crap. Now I really want to start moving forward with new options to give me my life back, Hubby his wife back, munchkin her mummy back and my family thier daughter and sister back.

I needn't have worried. I arrived, I parked, I got weighed (and the nurse didn't yell out my weight to the assembled masses), I waited all of five minutes and was called in. My consultant was attentive and wasn't hurried at all, I felt he had all the time in the world to discuss things with me. He made eye contact, he listened to my opinion, he explained things clearly and he didn't bamboozle me with jargon. Best of all he agreed that my time on steroids could come to an end, they're not working and I've been on them for three and a half years.

I have two options to look at, well three options if you count surgery, but the drug options are methotrexate and infliximab.

They are both intranveous and they both have a long list of associated complications and side effects. But they are new, I haven't tried them before and they might just offer me a glimpse of a normal existance. My consultant is keen for me to meet with the hospital's surgeon to discuss the surgical options before making a decision on which drug to go with. I have many things to consider - the most major being when we want to have our next baby as the drugs (and of course the surgery) would have a major bearing on the timings. Once I have decided then I call the hospital and the ball will be rolling immediately - whichever drug I choose I could be receiving it the following week.

And the icing on the cake? He's also going to refer me to one of his colleagues, a London specialist at one of the major hospitals, to discuss any drug trials or research he might be undertaking and to basically just speak to another expert.

I had a very tiny spring to my step as I ran through the hospital carpark in the pouring rain, and as I sat cocooned in my car with the water trailing down the windows I allowed myself a brief little smile and a celebratory tapping of the steering wheel. For the first time in ages I feel like I am taking tiny baby steps forward.

Tired

2008-06-02T19:18:00.004+01:00

Tired of writing down every bloody* thing I eat.

Tired of writing down every bloody** bowel movement.

Tired of being sick. SEVEN MONTHS and counting.

Tired of every journey to work being a personal Everest.

Tired of prednisolone and its side effects***

Tired of being tired.

Tired of people reacting to descriptions of my symptoms in a "can't you just pull yourself together" kind of way. After all it's "only diarrhoea". Yuh.

Tired of not being able to be the 100% mummy that my gorgeous, brave, empathetic, clever little girl deserves.

Tired of people's sympathy wearing out.

Tired of letting down the people whose sympathy and support is steadfast.

Tired of feeling so damn miserable.

Tired of writing depressing blog entries.

Tired of shoving enemas up my arse.

Tired of imagining a "normal" life.

Tired of battling with the NHS to receive some consistent care.

Tired of repeat prescriptions.

Tired of commuting.

Tired of being a totally crap wife.

Tired of looking like shit.

Tired of talking about it.

Tired of abandoning a blog entry half way through to go and release a pint or so of blood and mucus.

Tired of not being able to wear white knickers any more.

Tired of blood tests.

Tire dof being an expert on public-use toilets between Aldgate and London Bridge.

Tired of it all.

* not literally, I don't only write down stuff like "raw steak", "undercooked chicken" etc.

**literally

*** tired, irritable, ecstatic, fat, thin skinned, moonfaced, hairy, hair losing (but not in the right places), calcium deficient, knackered, pale-faced, sallow skinned, moody, depressive, ugly, floppy, yucky person.

Small triumphs and mini disasters

2008-05-30T08:54:00.002+01:00

As a UC sufferer each day is filled with little triumphs and disasters. Whereas a non-sufferer wouldn't count his journey to work as anything out of the ordinary, I do a little jig of joy if I make it from my front door to my desk without using baby wipes and a spare pair of jeans. A non-sufferer might be pretty damn glad to get home after an arduous couple of hours battling the evils of the London transport system, I'm ecstatic if I make it home without having had to utilise the facilities in Whitechapel Burger King. Every day is a collection of mini battles with my own body - willing it to hold out long enough for me to reach the next "safe" location, and congratulating it for surviving each expedition.

Tuesday

Small triumphs:

Made it* to work

Walked to Wapping and back from my office for my second counselling session without having to leg it into the toilet at Waitrose.

Made it home

De-weeded the communal front garden with Hubby instead of indulging in self-pity and wine

Mini disasters:

Actually made it to work an hour and a half late due to an hour spent in exruciating pain on toilet first thing.

My counsellor's socks**

Realised three bags of decorative bark chips are not near enough to cover 18 metres of flowerbed.

Lost about a quarter of pint of blood in sudden post-gardening attack. Pfft.

Wednesday

Small triumphs:

No attacks at all. Absolutely none. Zippity nada.

More gardening and no self-pity.

Mini disasters:

Window salesman didn't show up (though this could be considered a triumph...)

Thursday

Small triumphs:

Um...my cheese and pickly sandwiches were nice.

Discovered that Marks and Spencers on Fenchurch Street have a customer toilet.

Mini disasters:

Attack on way to work - just blood but very messy. Had to clean up and change in toilets on arrival to work.

Attack on way out of building at end of the day. Another attack half way to London Bridge though thankfully discovered the M&S toilet just in time.

Dealing with the total Numpty Idiot Man in front of me at the ticket machines who made me miss my train by faffing about with his card and generally behaving as though entering one's pin number onto a simple typepad is on a par with rocket science.

Three more attacks at home.

Friday

Small triumphs:

Made it to work, despite being convinced the walk from the station was going to be disasterous. I had that old familiar bloaty, rumbly feeling and I was certain that things would get messy. But I distracted myself by counting my footsteps and bizarrely this seemed to work.

Mini disasters:

None as yet, but the day is yet young.

*By "made it" I mean that I managed to successfully complete a journey without enduring a UC attack.

** This week green with pink spots, last week blue with black spots. Are they meant as a psychological test of my reactions?

Angry of Kent

2008-05-23T08:38:00.002+01:00

Dear Mr Consultant,

How are you? Just thought I'd write to say a big thank-you for the continued care you provide for my chronic illness. Every day that I am in screaming agony whilst stuck on the toilet pooing blood I give silent thanks to the fact that at least I don't need to bother myself with regular check-ups, blood tests or any other form of monitoring. Thank goodness for that, it's such a bother getting to the hospital and back.

Plus I prefer to just guzzle pills every day without asking too many questions. Why on earth would I be interested in knowing why I'm still on prednisolone after three years when it obviously isn't working? Nope, I'd rather remain ignorant. No need for any of those silly tests to check my adrenal glands either, I'll notice that they've packed in when I start vomiting and go into shock.

I understand that we have an appointment in August, when I phoned your secretary yesterday to explain my symptoms have considerably worsened she was kind enough to let me know you'd probably be too busy to see me. It must be nice to be busy and to be able to get up in the morning and go to work, what a novelty. Personally I can't stay away from the bathroom long enough to get out of the front door.

Anyway, see you in three months if my intestines haven't prolapsed and I haven't dissolved into a pool of prednisolone-induced insanity.

Lots of love,

aliwalidoodah
*mwa mwa*

Comfortable briefs

2008-05-17T19:18:00.002+01:00

Hubby has invested in some..hee hee...briefs. He was most disturbed at purchasing them, the pictures on the packets doing nothing for his self esteem (not even those blessed with a pair of sports socks and a six pack look good in briefs), but he has finally come to realise that life with UC is about survival. You need the right gear - undies that contain situations, spares clothes, wipes, spray, reading material, nerves of steel and super-quick reflexes.

He has just informed me that his "briefs are surprisingly comfortable". I had to blog it. It's just too amusing. It'll be speedos next.

Oh, by the way there are quite a few people who leave me comments on this blog, most recently Sarah who commented on the last entry, and I just wanted to say a really enormous thank-you. It's so good to hear from others and I always love to read people's comments and emails and hear about their experiences. Ulcerative colitis (and crohn's) should be lonely diseases and not so long ago they were (my own mother who has crohns didn't tell anybody, not even my Dad, for years) but in my experience they're not - I have met so many amazing people through this disease that it has almost been worth the battle. I really mean that.

The mean reds

2008-05-16T13:34:00.001+01:00

I worked from home yesterday as I was had an appointment at my local hospital. Rather unusually my appointment was not UC related, rather it was related to *adopts Les Dawson tone ad gestures downwards with eyes* woman's troubles. Unfortunately my UC, not wanting to be upstaged, decided to flare up so much that I couldn't make it to the hospital and had to reschedule for next month. So rather than spend my afternoon having an extra uncomfortable and extended cervical smear, I spent it reading Lucy Sullivan's Getting Married whilst sitting on the toilet losing blood. Sometimes this blog is so sexy I can hardly stand it.

Today I did make it into work today, an hour late but I made it. And I even managed to go out and buy a sandwich at lunchtime too. Tiny insignificant details to everyone else, major accomplishments for the intestinely challenged.

Yesterday I bit the bullet and decided to have counselling. My first session will be on Tuesday. I just don't feel I am handling everything very well anymore. I finally made the call after recovering from a marathon sobbing session brought about by a news report on the China earthquake. I couldn't cope with the idea of all the children being trapped. My already overwhelmed emotions literally went into meltdown. It was awful. I've been ill since September in varying degrees ranging from being a bit sniffly to sobbing in bed two stone lighter convinced I was dying. But there's been no let up, no periods of absolute wellness or health, illness has been fully present for over 8 months now. Plus there's the fact that both my husband and my father have become ill too.

I've always kind of prided myself on my ability to cope, now I don't even have that. And I keep wondering if maybe bad things happening to other people is somehow my fault, that I am some kind of kiss of death. And I am at least still sane enough to recognise that this is not a healthy way to be thinking.

Me no well

2008-05-12T21:23:00.005+01:00

Something's...up.

The last four nights I've been woken up with cramps and had to run to the bathroom. Last night I was in pain, but not recognisible like the usual UC nastiness. I took a couple of paracetamol and went back to bed but couldn't get comfortable unless I lay on my front. Bad sign.

I am also severely glum. I would say depressed but I don't think it's that, and besides I don't want to scare myself.

I want to work, I want to commute, I want to walk more than ten metres without needing to dash to the bathroom, I want energy, I want to be able to open my eyes in the morning without feeling the need for pliers, I want my limbs to work like they aren't filled with molten lead.

Something's up and I don't know what. I'm not pregnant I know that much. So I am either about to get much worse, or much better.

I took three days off last week to relax and chill out but it hasn't helped. Not to say I didn't have a fab three days to myself, doing mosaic and watching home improvement shows on Sky, but it hasn't helped. I am due back to work tomorrow and I know it's going to be problematic. My next plan is to buy a fold-up bike - my problems seem to arise during the walk to work from Shadwell station. So if I have a bike for that leg of the commute...problem solved right? Worth a go.

The dreaded walk...

The vegetable theory again

2008-05-04T19:31:00.002+01:00

After two sick days this week I was feeling pretty low. I feel like I have let my work down and my very understanding and caring colleagues and boss. I hate letting people down. And I seem to be struggling with the emotional and mental side of things lately, rather than just "fire-fighting" the symptoms. I don't know if that makes sense. day-to-day you just kind of get on with it, make a mental note of which routes to work have toilets, where they are and how quickly you can get to them (never quick enough). You pack your bag with spare jeans, clean pants, room spray and all the other bits you need as a parachute and you get on with battling your way through normal life. But lately I've been thinking. Bad idea.

So when my Dad turned up on Saturday with a Wii Fit board and left it with us to use for the evening I was glad of the distraction. Four hours later we were so hooked that even Hubby with his television addiction (don't get me started) was abandoning repeats of DIY SOS in favour of trying to beat my ski-jump score. We had a whale of a time and after four rounds of "super hula-hoop" I was actually out of breath. Absolutely brilliant. We've started our own "Wii board fund" now in a jar in our living room, we have £33 already, just £37 to go...

My tummy has not been good and I am beginning to think more and more that I may be reacting badly to vegetables - raw and undercooked. So I am going to avoid them totally, I love salad but I am going to avoid it at all costs for the next four days or so and see what happens. Damn intestines. Where's my long overdue remission?

New jeans old pants

2008-04-29T21:37:00.003+01:00

I threw away my third pair of knickers in a week this morning. Anyone with insider knowledge of UC will know the reasons - sometimes it's just easier. I had a huge attack on the way to work, it wiped me out so much I just headed straight home. I just couldn't be arsed (excuse the pun) with another day pretending to be bright and cheerful and normal and awake and healthy. Bugger it. Bugger it all.

My symptoms have taken a strange turn - one minute I am fine and getting on with life, the next minute without any build-up or warning I am in the midst of a full scale episode. Take this morning for example: It's just after 8am, it's pouring with rain and I have just purchased some Honey Nut Clusters from the shop by Shadwell DLR station. I am particularly happy as I like rain and I like Honey Nut Clusters and I am looking forward to eating them straight from the box whilst I check my emails at work. I turn down a road I never usually walk down, just for the change of scenary, and I am just thinking to myself what a nice little road it is and wondering why I hadn't come this way before and oooh look a little park and a ... BWAM!!!! ... Mr Bimble strikes with a full scale attack. I am still a five minute walk from my office and I am in the middle of a housing estate. It was not an ideal start to the day.

Usually I'd sort myself out and carry on, smile and say "not too bad" when people ask my about my journey to work, pretend that work issues really matter to me, ignore the fatigue and exhaustion, push thoughts of surgery, medications and doom and gloom to the back of my mind and get on with it. But there comes a point when you just can't do it anymore, and today was one of those days.

I spent the rest of the day at home eating M&S teacakes (I ate 10) and feeling sorry for myself in between making decorative tiles with some marker pens I found and some leftover white tiles we never used when we did the kitchen last year. These pics are rather blurry but I'm not really in the frame of mind to care today, you may have noticed from my general tone...

Getting worse again

2008-04-25T08:18:00.001+01:00

Despite not having any salad in the end yesterday was pretty dismal in the UC stakes. The day culminated in a lovely attack just as I was leaving the office with colleagues to go for some post-birthday drinks. Perfect. They had to stand around waiting for me while I got through it. After that I felt pretty wiped out too so the evening didn't get off to the best of starts. Then this morning I had the biggest attack I have had in some time on my way to work, my Emergency UC Kit had to come out (spare jeans, spare underwear, body wipes, you get the idea...) and I am now feeling thoroughly drained and miserable.

Sometimes this day-to-day slog of pretending everything is ok can really drag me down.

Salad?

2008-04-23T16:21:00.000+01:00

I've been a bit lax with the old enemas the last few days. We were away at the in-laws' for a night, plus it was my birthday* and things have been generally manic. I am still having attacks but they have changed in a number of ways: firstly, they are getting more controllable. I still have to dash madly to the loo but if I get the first twinges of an attack as I walk down the street I can generally breathe through them and bring them under control enough to buy me enough time to get to a bathroom; secondly, the attacks aren't as prolonged; thirdly, I am losing more blood.

Generally I would say that over the last four days or so things have changed for the better. This could be down to one of three things:
1. The enemas.
2. Luck.
3. I haven't eaten any raw or undercooked vegetables.

So I am going to do an experiment. Tonight I am going to have some lovely salad, and we'll see what happens tomorow.

*I had a lovely time thanks, I was given lots (LOTS) of stuff from LUSH, some lovely books, a fabulous new digital camera and free reign in Hobbycraft to buy mosaicing supplies (want to give it a whirl) Plus I got nicely drunk at a friend's birthday party.

Pentasa enema

2008-04-18T13:57:00.001+01:00

Last night I finally gave in and used the first of my Pentasa enemas. This is basically mesalazine in enema form, I already take mesalazine in tablet form too. I picked up two boxes of the things over three weeks ago and they have sat in a Boots bag on my newly tiled bathroom floor for the last week. I don’t like mesalazine. I don’t like taking it, I’m not sure it works or that it doesn’t do more harm than good. I don’t like that I am supposed to take it for the rest of my life but yet it is not free (I have to instead buy a Prescription Prepayment Certificate, or Illness Tax as I like to call it.) So I have been somewhat reluctant to squirt a bottle of the stuff into my intestines.

But last night I decided there was no harm in trying and, after a rather uncomfortable wrestle with the plastic bottle and ten minutes lying on the bathroom floor, I managed to administer the enema successfully.

Three things since then have been surprising:
1. I didn’t need to run off to the loo the moment the enema was in.
2. I didn’t need to get up in the night due to weird enema related disturbances.
3. I haven’t had a single attack or UC symptom since.

I usually have one minor to moderate attack first thing in the morning and sometimes when I arrive at work. But today…nothing. Not even when I went for a walk at lunch time when a symptom-free morning would usually catch up with me.

I am slightly dreading my journey home in case it all descends into disaster.

Rant: Why my £1 journey cost me £5.30

2008-04-16T19:32:00.003+01:00

My journey home:

I left work and teetered* the ten minutes through Shadwell to get my usual DLR train home. My usual DLR train costs me £1 to travel from Shadwell to Lewisham, very reasonable. Usually. Today it was not to be.

The DLR was running only half the way to Lewisham due to a broken down train so I had to change at Canary Wharf for the Jubilee Line to London Bridge, usually a minor incovenience, but today as the entire commuting contents of the DLR spilled down the escalators at Canary Wharf underground (the station that looks like a Teletubby house) the Jubilee Line joined in the fun and decided to run with Severe Delays (worthy of capital letters in the same manner as Passenger Action, Person on the Tracks and Severe Weather Conditions**)

I paid my £2 to get onto the slow running tube and stuck it out for the four stops to London Bridge, my toes slowly going numb and tried to distract myself with my book. I don't like being trapped on trains that aren't moving, it panics me, what if my tummy were to decide that was the moment to go into spasm? There'd be literally no escape, it's the stuff nightmares are made of.

Twenty minutes later I emerged blinking into the gloom of London Bridge station and allowed myself to get swept along in the tide of, by now very irritated, commuters up the steps towards the overground. I spent another twenty minutes queuing in order to spend £2.30 to get me through the Zone 1 (grrr) barriers and onto my train home.

I grabbed my ticket, checked the boards, flew through the barriers, raced up the ramp and along the platform, hurled myself through the barricade of People Who Like To Stand In Front Of Train Doors and...nothing. The train remained where it was. A few police people turned up and ran up and down peering in at us and speaking into walkie talkies. Then they went and then we were off. The woman next to me sighed, tutted or hurumphed every time I dared to turn a page in my book/breathe/move a muscle as it infringed upon the space she needed for her bag to be hoisted onto her shoulder (why do women do this? Put the damn thing down! You're a disgrace to female commuting!)

We made it to Lewisham and..nothing. The train remained where it was once more. Three police cars screeched to a halt and lots more police people turned up and ran up and down peering in at us and speaking into walkie talkies. Not one of them actually boarded the train, the just looked, and ran about a bit, then they went. And we were off again, no explanation, just a "stand clear" and off we went.

Hubby picked me up, a green rover tried to drive into the side of us at the same time a white van was trying to drive into the back of us on the A2, I nearly had a heart attack.

We got munchkin to bed, I came downstairs and flicked the kitchen light on, there was a loud BANG and everything went dark.

Hmmm.

Turned out a fuse blew. But I think just for now it might be safer for me to just pour a glass of wine and stay very, very still.

* Fabulous new shoes...

** See also: Light Drizzle, Slightly Windy, A Bit Nippy Out.

Waiting

2008-04-15T12:55:00.001+01:00

Hubby has now been taking his 40mg prednisolone, 1600mg asacol and 2 yucky calcichews for four and a bit days. His cramps have got far worse but he's not up in the night as much. Yesterday evening he wasn't up and down to the loo as much either. He says the worst thing is the pain at the moment. I am trying to remember how things were for me at this stage but, rather like childbirth, I have conveniently forgotten the pain and only remember the nice bits (watching Homes Under the Hammer, losing weight, getting better, escaping surgery etc.) and the bits that make good stories (stupid consultants, horrible doctors, lovely consultants, sweet doctors, yucky hospital food, toilets of Whitechapel burger king etc.) I do however remember telling Hubby at one point during a particularly bad night that I was going to die of pain, also rather like childbirth. But then the cramps subsided, the symptoms eased slightly and now I am better, not in remission, not perfect, but able to more-or-less act the part of a normal healthy person.

We're just waiting at the moment - waiting to see if the drugs will work for him, waiting for the full results of his colonoscopy to get the exact diagnosis, waiting for me to go into remission, waiting for the next bloody stressful situation that will be thrown at us. Waiting waiting waiting.

We moved back to our house on Friday evening having stayed with my mum for nearly three weeks whilst the bathroom was being done. We only actually got a door to the bathroom fitted yesterday so we had an interesting few days with just a makeshift curtain over the doorway. I would have DIED at the very thought a few years ago, but now we happy splutter, bottom burp, rumble and parp away with only the curtain between us. Quite frequently it's like a revolving...er...curtain as one of us hops around waiting for the other to finish. Poor munchkin must think her parents are completely bananas. If we are all sitting down together for breakfast and either Hubby or I nips upstairs, munchkin adopts her knowledgable face and informs whoever remains at the table "toilet" and nods sagely. When we pop our various pills in the morning she says "make tummy better". It breaks my heart - what chance does she have? Both parents with UC, the odds don't look good. But I'm not going to start thinking about that right now or I may just dissolve into a puff of stress-dust.

The one good thing is that we have a totally fabulous bathroom, I love it and could spend all day in there (bathing and preening though, not pooing.)

And on we go

2008-04-11T20:51:00.002+01:00

Life's just a hoot isn't it? Tell you what, says Life, here's a lovely bowel disease for you - you can have it all through your twenties and it can start to really take over your life in your thirties when you're busy trying to be a mother, a wife, a daughter and an employee. Not enough? Well ok then how about a nice juicey dose of Parkinson's for your Dad? You want more? Well here's colitis for your husband! Don't say I never give you anything...
Pfft.

I am feeling somewhat jaded this evening.

Hubby is ok I think, it's hard to tell as he keeps biting my head off. He tells me he is relieved to have a name for the symptoms but I don't believe him. They've given him 40mg prednisolone, 1600mg asacol and 2 calcichew (yuck) per day. His colitis is "indeterminate" which I think means we're waiting for results. There was no mention of "ulcerative" anywhere on the report that I could see. It affects one part of his bowel and is moderate, so that's good. The problem is I think he reckons that overnight he's going to become a moonface steroid person in hospital awaiting surgery, like me. I've tried telling him that most people respond well to the meds, most people go into remission for very long periods, most people have fairly moderate flare-ups. I can understand he must be worried having seen me go through it all, but my case is unusual; it's severe and I don't respond well to drugs.

I'm struggling too - I am still in recovery, still adjusting to life back in the real world whilst still dealing with symptoms (no remission for me yet). And now suddenly the illness that has been my own personal battle for over ten years is now my husband's battle too. It's a tough one to get my head around.

I don't deal well with other people's illness. I have no idea why seeing as I spend so much of my life actually being ill. I get annoyed by other people's illness, it worries me too much so I prefer not to think about it. I probably avoid speaking to my Dad about his situation in any great depth as I am too scared to hear about it.

What the hell is going on, eh? Why does Hubby have colitis too? Is it just statistics or is there a clue here to the cause? Is there something environmental that has caused this? Or is colitis just common enough that it can be likely both people in a marriage will develop it?

Nnnnnnnnnnnnnnnnnnnnnnnnnnnnnng! I could crush a grape!

It's all so bloody crap. Literally.

Colonoscopy #2

2008-04-10T16:39:00.001+01:00

The results are in. Hubby has moderate ulcerative colitis.

Hmmmm.

I have many thoughts on this. More later...

Colonoscopy

2008-04-10T08:11:00.002+01:00

Today's the day we find out what is wrong with Hubby's bowels. More news later.

In the meantime, isn't the bathroom coming along well?

Before:

After:

Keeping it in the family

2008-04-08T21:05:00.003+01:00

My mum's 60th yesterday went well. We managed to surprise the hell out of her with champagne, strawberries, a surprise visit from my little sis and a roomful of her oldest friends. She enjoyed it, we enjoyed it,and everyone drank a little too much fizz. Perfect.

Today was to be my first day of working my normal hours of 8am-5pm (I do compressed hours so I can work a four-day week). It didn't go according to plan. It seems my ulcerative colitis prefers routine and the change did not go down well. As a result I was at home today and didn't make it in at all. I hate this as it makes me feel abnormal once more, plus there's the feeling of letting everybody down.

Fortunately my boss and my workplace in general are very touchy-feely-lovely and very understanding, this is what comes from working in the public sector. Hubby on the other hand is facing different struggles. His symptoms have worsened quite dramatically over the past few days to the point where he has been up three to four times a night to go to the toilet. He couldn't make it into work yesterday or today. Tomorrow he starts taking Picolax in advance of his colonoscopy on Thursday afternoon so he has to be at home. Fortunately the kind of work he does is easy to do from home, fortunately Hubby is good at working from home as he can throw himself into it and appreciates the lack of distraction. Unfortunately it seems his boss doesn't trust that he is doing enough work, nor that he is genuinely unwell. This is despite the evidence to the contrary on both points. He works in recruitment, say no more.

I am worried about him. I don't want him to have ulcerative colitis, or crohn's, or even IBS I have 12 years of experience of this stoopid illness and I wouldn't wish it on anybody, not even his boss. What will we do if he has UC too? We only have one toilet...

I am worried about my Dad too. He starts medication soon, a low dose, for his Parkinson's Disease. He's scared - of the side effects, of the fact it might not work, of the future, of dying, of being immobile, of being unable to speak.

The two men in my life are scared and unsure and about to embark upon new paths, paths that now have chronic illness attached to them. And I'm not sure what to do to help them.

I'm scared too.

Birthdays and bowels

2008-04-03T14:32:00.001+01:00

It's been another hectic week in the house of aliwalidoodah. Or rather in the house of aliwalidoodah's mum as that is where we are staying whilst we have no bathroom. To make matter's worse aliwalidoodah's mum's cooker caught fire and blew up* whilst aliwalidoodah (must stop referring to self in third person) was cooking pizza** so now we can't actually cook anything unless it is done on the hob. Fabulous when you have ten people turning up in four days for a surprise 60th birthday soiree.

Whilst all this has been going on of course we are having our bathroom done so we've been running to and fro ensuring that basins are in the right place, towel rails are fitted and tiles are not wonky etc. And I have been secret squirreling away organising various retirement and birthday surprises for my mum, and helping her friends and colleagues do much of the same. I've been crawling around lofts and dark corners retrieving old photos and sitting up into the night scanning them and editing out creases. Hubby and I have created over 60 invitations ready to send for her birthday party in June and I've been shopping for earrings, antique brooches and gift vouchers. Oh and then there's the champagne and canapes for Monday - all of which have to be edible without having to go near an oven.

And it was munchkin's birthday too - so we had a house full (mum's house full that is) on Sunday for champagne and cake (bought at the last minute from Marks and Spencer since the demise of the oven put an end to my banana cake.) I spent the better part of Monday morning racing round "crayzee barn" squeezing through tunnels and hoisting the munchkin up through rope climbing frames and down wibbly wobbly slides. My arms still ache. We had fun though, and munchkin was throughly spoilt by all our friends and family - she got so many toys and books! And we still haven't given her our present (a big slide for the garden) yet! Her eyes will pop out of her head, I can't wait.
I can't believe she is two-years-old already. Time really does fly when you have kids, that's what everyone kept telling me when she was still tiny and screaming the house down all night, when I was exhausted and clueless and wondering why on earth I'd thought having a baby was a good idea. But it's true, after they calm down a bit, start eating proper food, start sleeping through the night and become proper little people time really does start to hurtle past at an alarming rate. I'd have another one tomorrow, all the hard work is forgotten now that I see my charming little gorgeous girl running around with plastic golf clubs yelling "well done mummy" as I miss yet another ball.

The colitis continues to be ever present and shows no signs of being pushed into remission by the steroids. It is however mild enough that I can go about my daily life more or less normally, with some pretty fast dashes to the toilet. I saw my consultant on Tuesday - my actual consultant, not his bloomin' registrar! I am privileged indeed. Doc C was very nice, so nice in fact that I actually came out feeling quite positive. He took his time, listened to what I had to say, answered my questions, offered advice and explained things clearly, he even smiled and made conversation. I was impressed.

I will not be seeing him again for another four months, touch wood. And in the meantime I am to reduce my steroids steadily and slowly. I am to do this myself, reducing as and when I feel ready as Doc C feels I know better than anyone how my body is reacting to my drugs. I like this empowerment! I will continue on the 1200mg of asacol and no more as I feel anymore has an adverse effect on my symptoms and makes me feel unwell. I will also see a surgeon, not to plan a colectomy but to discuss the options available to me in the future. Doc C did mention that I might want to consider my timing with our next baby - sooner rather than later seemed to be the advice, as any surgery could affect my fertility. Hubby and I had planned on trying for another one this year, but had put those plans on hold in favour of a period of normality following my illness. Now with Hubby unwell too, well, now just doesn't seem like the right time. But that's a whole other blog entry for a whole other day.

* when I say blew up, it kind of whirred a bit, set off the smoke alarm and ground to a halt.
** the jury is out as to whether this was down to my cooking or the fact that the oven is over 30 years old.

Happy Birthday Munchkin

2008-03-31T22:25:00.001+01:00

Today was Munckin's 2nd birthday. We had a great day.
Happy birthday gorgeous girl xx

Mild or moderate or severe?

2008-03-27T13:37:00.004Z

Whilst eating my brown rice and vegetable stir-fry at my desk at lunchtime today I had a read of Number Twos and my interest was grabbed by yesterday’s post.

When I was admitted to hospital in January I was told I had "fulminate pan-colitis". I remember at the time looking this up on the interweb, just to check my intestines weren’t about to fall out or something, and I found the following here. I figured that, given that we may well share some readers and that we definitely share a common topic, it would be helpful to include this info here.

...Clinicians often use specific terms to discuss how much of the colon is affected by UC. This often related to the severity of symptoms and the course of the disease over time. Treatment varies depending upon which parts of the colon are involved. The following summarizes commonly used terms...

Ulcerative proctitis refers to disease limited to the rectum.
Distal colitis or proctosigmoiditis is used when the inflammatory process extends into the mid-sigmoid colon
Left sided colitis refers to disease that extends to but not beyond the splenic flexure (the sharp bend in the intestines where the transverse colon joins the descending colon, located under the spleen)
Extensive colitis is defined as disease that extends beyond the splenic flexure but not as far as the cecum (the beginning of the colon).
Pancolitis is used when the inflammatory process extends to the cecum.
Patients who have large amounts of colon involved tend to be sicker. However, even those with only left-sided disease can be ill. In about 15 percent of people with limited forms of ulcerative colitis (left sided or below), the disease begins to involve more of the colon within five years of diagnosis.

SYMPTOMS — The symptoms of ulcerative colitis can be mild, moderate, or severe and can fluctuate over time. The term "flare" is used to describe periods in which the disease becomes more active. The term "remission" is used to describe periods of quiescence, or inactivity.

Mild disease — Symptoms of mild ulcerative colitis include intermittent rectal bleeding, mucus discharge, and mild diarrhea (defined as fewer than four stools per day). Symptoms may also include mild, crampy abdominal pain; painful straining with bowel movements; and bouts of constipation.

Moderate disease — Symptoms of moderate ulcerative colitis include frequent, loose bloody stools (up to 10 per day), mild anemia, mild to moderate abdominal pain, and a low-grade fever.

Severe disease — Patients with severe ulcerative colitis usually have a large region of the colon involved, often the entire colon. Symptoms of severe ulcerative colitis include frequent loose stools (more than 10 per day), severe abdominal cramps, fever, dehydration, and significant bleeding, frequently leading to anemia. Severe ulcerative colitis can lead to rapid weight loss.

Fulminant disease — Fulminant ulcerative colitis is a worsening of severe ulcerative colitis that causes a high white blood cell count, loss of appetite, and severe abdominal pain.

Extraintestinal disease — For poorly understood reasons, patients with UC can develop inflammation outside of the colon. Inflammation often affects the large joints (arthritis, and sacroiliitis), the eye (episcleritis and anterior uveitis), the skin (pyoderma gangrenosum and erythema nodosum), and, less commonly, the lung (show picture 1-4).

At the moment I could have mild, moderate or severe symptoms depending on the time of day really. Though I know my underlying case is "severe" but the steroids suppress it.

Fenchurch Street Station toilets

2008-03-26T09:09:00.002Z

Thank the UC gods for the public toilets at Fenchurch Street station. I decided to walk to London Bridge when I finished work yesterday so I could pop into Next on my way home. Usually I walk the opposite direction through Shadwell to get the DLR. Thank goodness I didn't. Five minutes into my walk I got the initial twinges that signal an oncoming attack and I knew I had to find a toilet fast, if I had been in the middle of Shadwell there would have been no options for me at all. As it was I was able to duck into Fenchurch Street and find a very clean and well maintained set of lovely public loos and all was well. 5 out of 5 for cleanliness, maintenance, smell, sinks, loo roll and atmosphere. Well done Fenchurch Street.

I am staying at home today though - I am not risking it by commuting and rushing about. I will rest, have a long bath, sleep a bit and generally take it very easy, I am learning to heed the warning signs.

In non-UC news our bathroom looks like this:

Actually at the moment it looks a lot worse as it now has no ceiling or floor. By the end of the week it should be a gleaming oasis of shiny new tiles and bright white ceramic things. I just can't picture it at the moment.

Cyncial post about doctors and the NHS

2008-03-23T19:35:00.003Z

Call me naive but surely if you have a chronic illness which recently landed you in hospital on a drip and which is now being "managed" by specialist consultants, then you should maybe at least see said consultant within the two months since you were discharged? Or at least have a blood test or something? I mean I'm on 40mg of steroids (and many other drugs) here, so it was a bit surprising that both my consultant AND his registrar both buggered off on holiday at the same time and shifted my appointment to 1st April - over two months since my hospitalisation. And when I queried it they said I could go to A&E if I got that unwell in the meantime.

EH!?

Surely their job is to stop me getting to the point of rushing into A&E? I've had this damn disease for 12 bloody years, surely we can skip the emergency part given that I'm a bit of an expert on the triggers and warning signs?

Weird.

First day back at work today after the easter hols and I am knackered. Trying to cut out sugar and more specifically biscuits in an attempt to shed a couple of pounds and stay healthy. Not very easy though, an apple and a salad just ain't the same.

My twelfth oestara with ulcerative colitis

2008-03-23T19:01:00.004Z

I love this time of year. I love the fact it could snow or be sunny and cool, or sunny and warm. I love the light of this time of year, the ever so slightly extended evenings, daffodils, easter eggs, planting seeds, foxes, blossom and the long bank holiday weekend. Oh, and the fact that it's my birthday, Hubby's birthday, munchkin's birthday and my mum's birthday is pretty good too - plenty of excuses for celebration. (And yes, that does make four Aries in the same immediate family, ouch.)

This year marks my twelfth year since my symptoms first appeared and my first year of fully accepting my illness and how serious it can or could be. It also marks Hubby's first year of suffering from scarily similar symptoms. Yup, as the fates would have it he has been suffering badly for the past few months with UC type symptoms that have been getting steadily worse. He's due a colonoscopy in the next few weeks, he's really scared. I think it might be stress-related IBS due to the extreme pressure of the past year or so, but we'll soon find out. Whatever it is, we'll deal with it, we always do.

I have started to look at nutrition, I have started reading books on diet and UC, lifestyle and UC, UC in general , research into possible causes and cures etc. In short, I am taking an active role in my health, and in my Hubby's health. I force us both to eat bananas daily (potassium) and peeled apples, porridge, lots of water, and plenty of veg and oily fish. We've cut down on our red meat, not that we ate loads anyway, and we're making our own nutritional packed lunches for work. We're trying to relax more, not get too wound up with things, get early nights, take supplements, flower remedies, homeopathic stuff.

Spring is about new beginnings, fresh starts, fertility, abundance, the earth, making plans, and hope for the future. So despite everything; the bad luck, the stresses and strains, the illness, the pressures, the work and the drugs, despite all these things, now is a good time to be looking forward, staying positive and hoping for the best.

Happy oestara everyone xx

(I'll try to be more cynical tomorrow...)

Positivity

2008-03-04T19:54:00.004Z

I've had a lovely few days. There have been more than a few moments since Friday when I have looked around and thought to myself "pretty nice life actually".

Hubby rolled home on Friday night nicely sozzled but not roaring drunk and we were both fast asleep and snoring by 11pm. We spent most of Saturday with my Dad and step-mum who thoroughly enjoyed their time with munchkin and even got to show her off to their friends who live round the corner. Later the same day we were treated to a visit from one of those said friends, who brought her little grandson who's the same age as munckhin and totally and utterly adorable. At the same time my sister arrived from Birmingham and a nice hour was had by all drinking tea (everyone over the age of 2), eating biscuits (mainly me), playing with megablocks (everyone under the age of 2), building forts out of wooden blocks (hubby) and dancing around the kitchen to the highland fling being played from a novelty fridge magnet (my sister).

On Saturday night my sis babysat whilst we met friends for dinner, again we were in bed by around 11pm and snoring.

Sunday was Mother's Day and it was fab. Hubby presented me with a gift set of lovely things from Lush and some lovely cards from him and munckin, then he went off to football and my sister and I took a very excited munchkin swimming with her new arm-bands. She was a bit wary to begin with having not been taken swimming in so long (bad parents) but soon got into it. We're going to be taking her every week or two now that my UC has settled a bit. After swimming we drove to my mum's to surprise her with the fact my sister was with us - my sis hid in the back of the car with munchkin, I rang the doorbell and when my mum answered I said I was desperate for the loo and could she grab munckhin from the car for me. So when she went to get her my sis jumped up and shouted surprise! It worked a treat and she was really chuffed to bits.

We cracked open some cava mid-afternoon, I had a long luxurious soak in the bath and we cooked a three course meal which ended with hubby's homemade guiness cake and more wine. We were all quite pickled by the evening and everyone agreed that it felt like we had had a Christmas now. I had been so ill at Christmas that it was a bit of a non-event, but Sunday more than made up for it and we had a great time.

I then had munchkin all day on Monday just the two of us and fell exhausted and happy into bed around 9pm feling ready for my return to work today. But that's a story for tomorrow I think. Right now I am going to go and glow in the memories of my lovely weekend and feel very very lucky.

Surviving the commute once more

2008-02-29T21:23:00.004Z

Depsite an issue with a station carpark, one cancelled train, some dodgey looking terrorist types (blokes with rucksacks looking a bit sweaty) on the DLR and a carriage full of school children, I made it to my office in one piece. I then enjoyed a lovely lunch with my team and my boss and saw a few old faces.

It was incredibly nerve-wracking walking back into that office, more so than you could imagine. To have been away sick for so bloomin' long and then to waltz back in looking relatively healthy, albeit with a round steroid-moonface, and reply "really well thanks" to every well meaning question about how it's going, well, it must seem weird to other people. It seems bloody bizarre to me.

The journey was fine: I didn't have an attack, I didn't panic and I didn't fall onto the tracks or anything like that. I remembered to take all my pills whilst on the move and I only ate one packet of minstrels to keep me going on the long, er, half-hour-long journey.

I picked munchkin up from nursery on my way back and we spent a lovely couple of hours together before Hubby got home, although I was totally exhausted and couldn't really throw myself into a game of "make-the-monkey-look-for-shoes-everywhere-except-where-we-all-know-the-shoes-are-actually-kept" (a game invented by Hubby god love him) with my usual gusto. I was glad when Hubby eventually returned and took over.

Today (Friday) had been pretty brilliant. Munchkin and I spent the morning doing the shopping, then we planted chives and parsley in pots salvaged from the vast collection left by the previous owners in the garden. Munchkin had a whale of a time selecting pots, stuffing them with mud, covering herself in muck, sprinkling seeds LIBERALLY and drenching everything, including me, in water. She then had a two hour nap whilst I pottered about tidying up and my Dad and my step-mum arrived for the first of two visits this weekend. They were so excited to see munchkin and went up to see her as soon as she was awake. Then we all headed to Bluewater so they could buy munchkin some new shoes and, because my step-mum can't resist, some lovely outfits in Next. We grabbed some food in John Lewis and then headed home. Hubby is out with friends tonight so they helped with bath-time and everyone loved it, especially me as I was grateful for both the company and the extra pairs of hands, as well as the fact that my Dad was obviously really enjoying it all despite being so low about his Parkinson's.

My UC has been very well behaved today, touch wood, I even had an almost normal poo. Isn't this a sexy blog?

Anyway, I am three glasses of vino down (primarily drunk for pain relief during my DIY bikini wax) and I think it's time for a camomile tea and bed with Gordon Ramsey (the autobiography, dur).

This is one happy and slightly mellow UC sufferer saying "Goodnight America, wherever you are..." (Ha ha! Name that show!!!) Hmm, I think I may be a bit squiffy.

Off to the big smoke

2008-02-28T09:33:00.003Z

Today is a rather important day. In about an hour I am going to go and get a train into London, walk the 10 minutes from the station to my office and meet my colleagues for lunch. I will be completely and utterly out of my comfort zone, nowehere near a toilet and I am terrified. I shouldn't be terrified as this is guaranteed to make things go wrong.

My UC is kind of under control, I have an episode or two most mornings and that tends to be it, although I do also sometimes have random attacks at different times of the day so it is still incredibly unpredictable. Over the last week or so I have been out and about, on my own and with munchkin, to the shops, in the car, small trips like that. But this is a bigger trip, away from the car and toilets and normality, or what amounts to normality for me at the moment.

The idea of this trip is to see how successful it will be. The plan is for me to return to work on Tuesday next week on slightly reduced hours so that I can miss rush hour etc and today is about seeing how I handle the commute. But with an hour to go I am feeling really anxious and I am tempted to cancel and not go through with it.

I shall report back later on to let you know how I get on.

Drinking milk straight from the bowl

2008-02-27T22:08:00.001Z

Just because she is so adorable and hilarious..

Drugs drugs drugs

2008-02-25T16:06:00.003Z

Well after over two weeks of being at death's door today is the first day I can honestly say that I am beginning to feel better. I can walk and talk, I can think beyond my next sleep/pill/strepsil/painkiller and I can get dressed and give a monkey's what I actually look like. As little as 48 hours ago I could barely lift my head from my pillow.

A chest xray last Thursday confirmed a bad chest infection and I was given more powerful antibiotics designed to deal with it. I have spent the best part of two weeks either in bed or wandering around feeling horrendous. I have never had a chest infection before and never wish to experience anything like again, the only thing I can liken it to is the flu, only more painful and prolonged. It was all really bad timing; I was due to go back to work now that my UC is more under control and I am over the worst of it all and then I just got knocked for six. I am now going to attempt to go back next week instead and will use this week to organise myself, relax and generally recover and get myself to good health.

For the last four months I have been ill nearly all the time, once again I am becoming well again. It is now up to me to make sure I stay that way.

Still alive, just, cough cough...

2008-02-20T14:06:00.003Z

After my last entry munchkin got no better. I took her to the doctor's on Wednesday and he gave me antibiotics for her. I took her home and she wanted to sit in her cot with me, so we scooped up Dave (her monkey) and Ted and we sat in her cot with a blanket and named things that we could see in her room, then we sang some songs and she fell asleep. I was exhausted, had been all day but put it down to a couple of days of full-on parenting after so long of not being able to do much at all. Just looing after my poorly little girl and being there for her, rocking her and singing and making sure she was ok was good in a way, made me feel like a capable mummy again.

By the end of Thursday (Valentine's Day) she was on the mend and I had developed a cough. On Friday munchkin was just about well enough to go to nursery, she had to because I was just about sick enough to collapse. The weekend is a blur - I spent the whole time in bed feeling like death. Hubby and I even missed the christening of my best friend's son - we were due to be godparents and I was so looking forward to it. But I couldn't move, couldn't speak for coughing and hacking, couldn't walk and I hadn't had more than an hour's continuous sleep since Thursday night. Hubby decamped us all to my mother's that evening, I still don't know how I made the journey.

On Monday morning after another sleepless night spend hacking and coughing my stomach muscles into a frenzy I felt worse than ever. I went to the GP who gave me antibiotics. A family friend who is homeopath dropped round some remedies. I bought some soothers, strepsils, throat spray, parecetamol and ice-cream. Today is Wednesday and I am finally starting to feel better at last.

It had been yet another week of illness for me, another week of being a totally useless wife and mother, and yet another set back. I have been struggling emotioally and mentally with all of this. I have been sick pretty much constantly since October. I seem to get every bug, infection, virus or otherwise. Plus there's the UC and the odd admission to hospital. It all just seems so bloody unfair. Was I Hitler in a former life?

Ladies and Gentlemen - my intestines!

2008-02-12T19:17:00.001Z

Aren't they lovely? The enema was horrid but the endoscopy was brief and not too bad, I even managed to do it without a sedative which was a first for me. What you're looking at in these pictures is the end of my large intestine - it's currently suffering with "moderately active" ulcerative colitis. I couldn't care bloody less how active it is as long as I can get on with normal life to be honest. And the last few days have been particularly normal, kind of. I am even planning on returning to work next week, on slightly reduced hours for a bit, but returning nonetheless.

The Doc never bothers much with hello and goodbye when I see him, which I think is a bit on the rude side. You'd think the sentence "I'm just going to give you a rectal examination" should at least be preceeded with "good morning" but there you go. I don't understand it, why not chat with your patients? Comment on the weather, the terrible parking, the time of day for goodness sake - show some of your human side. "Good morning Mrs D, what a foggy day it is, especially considering it's nearly lunchtime. Did you get parked alright? Bend over while I apply this lubricant..."

Pfff.

2008-02-11T19:39:00.000Z

Perhaps not the most health-conscious decision on the night before an endoscopy but, hey, it's been a tough day and I have to have an enema tomorrow so thrrrrrrrrrwt (that word there is supposed to indicate a raspberry sound.)

Plus, hubby has a new CEO started and this CEO has decided to spend the day tomorrow at the London office learning about how their operations work - so no leave for hubby. Sod the fact that I have to be sedated and need hubby with me to stop me gibbering off into the sunset with my hospital gown flapping about my bare bum. To make matters even more awkward, munchkin is ill. She has a really rotten fluey cold and a sore throat and is thoroughly miserable. Bless her heart though she is still an angel and no trouble at all, we spent a cuddly afternoon reading through all of her books and watching Fifi and the Flowertots on DVD. I eventually put her to bed early after she grabbed a blanket and Dave (her favourite cuddly monkey) and laid herself down on the sofa murmering "sleeeeeep..."

My mum was due to look after munckin tomorrow while hubby took me to the hospital. With hubby out of the equation what we would have done is have my mum take me to hospital with munckin in tow - then they could have gone to the local park whilst I had my procedure and then driven me home in my dribbling sedated state afterwards. But with munchkin ill this isn't possible. Luckily my mum has a large network of very supportive and mainly retired friends. So her friend Kate is going to take me to the hospital instead, or possibly look after munchkin (much more entertaining than me in a delirious state garbling about goblins) depending on how well she is feeling in the morning.

It's all very complicated. It makes my brain hurt. So wine it is.

I spoke to my Dad this evening who is depressed because the DVLA have told him he can only have a three-year maximum licence due to his Parkinson's. I think it's just another nail in his deterioration coffin for him. Never mind the fact he could get to three years from now and reapply successfully for another three years, and then again and then again. All these little things really drag him down. But I don't blame him I guess. I just need to be a better daughter - be more present with the positive things, lift his spirits and stuff.

Still, I've been to the loo once today and things are definitely improving. Once I have my health back I can do anything.

2008-02-10T18:56:00.000Z

Aren't my flowers lovely?
My boss came round on Wednesday night with another colleague (who I sit next to) for dinner and to see how I am. This may sound like some kind of official checking-up type visit but it wasn't. I just happen to work in the world's nicest place - the people are genuinely and non-irritatingly lovely. And they really care that I'm sick. They bought me trashy celeb mags (Reveal, Heat...) to relieve the monotony of daytime telly, books to read and these lovely flowers - roses, lillies and eucalyptus. The director who I am PA to sent me a gift box from Lush (my most favouritist shop), some scented candles and some herbal teas. And others sent me cards and lovely stickers (I like stickers). Seriously, sometimes I am reminded that there are normal, lovely, kind people in the world. It's not all chavs and throw-backs.

Over the last couple of days, touch wood, I have to say that I have noticed a disctinct improvement. I am not waking at 5.30am to rush to the loo, I wake with the rest of the family around 7am and decide to go to the loo when I feel I ought, rather than rushing off at the speed of sound hell bent on making it to the loo before disaster strikes. Movements are becoming more formed (apologies to all non-UC readers who may not want to know) and I tend to go once in the morning, then that's more or less it for the day. At this rate I may even be able to rejoin the human race next week.

We left my mum's and came home on Friday. Today I even looked after munchkin all morning until after lunch while hubby ran around Hackney Marshes playing Sunday league football. And it was fine. I didn't need to lie down, I didn't need to rush to the loo and I was able to be a fully functioning 100% mummy - we even went for a walk, played in the garden and ran around.

All in all I am one positive bowel-impaired individual this evening. Might treat myself to a ham sandwich, good times.

The day after

2008-02-06T12:47:00.000Z

Bimble is fighting back and has treated me to some extra mid-morning attacks today. Was it the ice-cream? The two small glasses of wine? Or even the courgette I had with my healthy dinner? I think an elimination diet is due. Not fun but at least maybe I might be able to identify whether or not certain foods affect me in any way. Maybe I'll find out that it makes no bloomin' difference at all.

I've just had some sardines on toast for the first time ever in my life. I read that sardines are a really good source of all those lovely fish oils and that are supposed to be good for us so I thought I'd give them a go. It wasn't too bad, not my favourite thing in the world but if it's good for my bowels then I'll eat them once or twice a week if I have to. Fortunately I love tuna and salmon and stuff like that too.

Food is becoming a bit of a "thing" at the moment. The prednisolone makes me really hungry and I crave sweet stuff, but the UC makes me kind of scared of eating most things. I'm really into eating good healthy and nutritious stuff, but I'm also into the idea of becoming an alcoholic and just drowning out all the pain and worry. Obviously I won't actually be going down this route. I'll stick to the odd glass here and there with dinner and a nice cup of camomile tea before bed. Maybe I'll become addicted to herbal tea...

Being naughty

2008-02-05T21:25:00.000Z

I've had some lovely healthy omega-3 filled salmon, with smooth and easy-to-digest mash potato, and some garlic-smothered courgette lightly cooked in a small amount of olive oil. Lovely.
Now I am going to have ice-cream and a glass of wine, maybe even two or three. HA! In your face ulcerative colitis, I'm having a bloody night off...

Another turn for the worse

2008-02-04T09:13:00.001Z

The last few days have been somewhat hellish.

After a mild few days following my release from hospital - where I would suffer attacks in the morning but nothing too severe or prolonged - I suddenly became very ill on Thursday. I felt nauseas, I couldn't eat, I was wiped out, I went to bed and I was up every hour to go to the loo. By 5am I was a shivering heap curled up under a duvet and a blanket crying and seriously believing I was actually going to meet my maker. I was dehydrated and felt like I had lost every ounce of fluid left in me.

I called my consultant’s secretary, she wasn’t very helpful but promised to get a message to him when she could. I called my GP and got a message to him too. I spent Friday morning drifting in and out of a fitful sleep and feeling horrendous. My consultant’s secretary called me back and told me she had spoken to his registrar and he had advised me to come back to hospital by presenting myself at Accident and Emergency. Now, at this point I could barely summon the strength in my legs to get to the bathroom, which I was having to do every hour or so. I was a mess, knackered, hair matted to my head from sweating all night, I had a bowl next to me in case of sudden sickness and I couldn’t be more than a few metres away from a bathroom for more than about ten minutes. And I was supposed to take myself to A&E to sit in a waiting room for five hours on the off chance a bed could be found for me at some point? Surely if I am under the care of a consultant who wants me admitted he could arrange for me to come into the hospital directly rather than clogging up the already over-stretched A&E waiting times? I am not adverse to sitting waiting to be treated in A&E, I’ve done it many many MANY times – for myself, for hubby and for munchkin. But if I am sick, properly sick, and under the care of a consultant surely there’s a better way? I mean I have to believe that I have paid my NI and my taxes for something that amounts to some smidgen of healthcare now that I need it, right?

I was too sick to go. So I didn’t. My GP was great and arranged an emergency appointment so he could check me over and confirm I wasn’t dying. He checked all my vital signs, blood pressure etc. and prescribed some Dioralyte (bloody marvellous stuff). I went back to bed and rested for most of the weekend , I ate only white bread or ham sandwiches (but only because I had to in order to take my medications) and drank lots of water.

It’s now Monday morning – I have an appointment with my consultant (or his registrar, who knows) at 11.05am. I have a long list of questions. I don’t know if he will readmit me, I don’t know if I will get any answers or progress. I don’t know anything at all, and that’s the most frustrating part. I feel like I am fighting the NHS for answers and care. I am beginning to think that leaving Whipps Cross and Doctor S behind has been a big mistake.

The other thing that is really confusing me is the overwhelming amount of information available about diet and ulcerative colitis. The scale of information available is mind boggling and it’s all bloody different: eat fish, don’t eat tuna; don’t eat processed foods but only eat white bread; plenty of fruit and veg but no vegetables; buy a juicer but don’t drink fruit juice; drink herbal teas but don’t have hot drinks; no dairy but eat probiotic yoghurt; plenty of fibre but nothing wholemeal. I thought I was quite hot on nutrition, clearly not. It’s definitely something I am going to look properly into this week. And maybe I’ll add “nutritionist” to my long list of things to discuss with the consultant/registrar this morning.

I’ll let you know how I get on. Oh, and thanks to all who have commented so far – it means a lot to know that people are actually reading my rantings and that there are others out there for whom this is meaningful in some small way.

My hospitalisation in pictures

2008-01-30T08:19:00.000Z

Last time I was hospitalised with ulcerative colitis I was so damn ill I had little to no sense of humour about it, this time I at least retained some positivity, even if it is waning now I'm out. As a result I took pictures whilst I was in there, gawd knows why as it's not like there ones for the album or to show the grandkids, but nevertheless they make for interesting viewing.

My first night's meal. You can't make this stuff up, really:

The view from my bed:

Munchkin comes for a visit:

Daddy helping munchkin wash her hands:

On Day Two or Three I sent a text to everyone in my phone telling them to send me pictures to cheer me up. Here's some of the picures I received.

Missing the rush hour?

My sister:

A guinea pig's nose:

Crystal Palace park in the morning:

Ruby the furry cat:

Ian's "sex face":

Hubby:

A silly cat:

My cousin and his forklift truck:

Another silly cat:

Some very kitsch slippers:

My best mate Clair:

Some lovely flowers:

My mate Tony and his entourage:

OK, going back to my own personal photos (this is fascinating right?)

Lunch, actually looks quite good doesn't it?

Dinner, hmmm, not so good:

Making jewellery:

One more dinner picture (one small potato and one spoonful of tuna!)

And lastly - me. Listening to my headphones and before the steroids start to take over my face and make me look like a lollipop:

The Prednisolone is getting to me...

2008-01-29T15:13:00.000Z

Since leaving hospital on Saturday I have been staying at my mother’s with hubby and munchkin. It means an extra pair of hands to help us out, particularly in the mornings when Hubby is trying to dash off to the real world (where the main focus isn’t bowels) and I am usually stuck in the toilet in excruciating pain. It has worked out quite well, my mum has been on hand to help with the munchkin on the days she doesn’t go to nursery and I have tried really hard not to feel like an absolute disasterous failure of a parent because I don’t have the physical ability to look after my own daughter on my own at the moment.

I’ve been doing a lot of resting – sitting reading in bed, dosing off, trying to find more UC blogs on the internet etc. And I have been doing a lot of thinking. This past week, going back into hospital once more, has finally opened my eyes to the fact I have a life-long illness that just ain’t going to go away, not unless I opt to have my large intestine cut out that is and even then my post-operative life would be no picnic. As a result the emotion I have mostly been experiencing for the last twenty four hours is ANGER. Absolute seething rage of the “why me?!” variety. I actually get pissed off with the benefit-sponging chavs in primark who aren’t even grateful for their healthy bowels – they eat bloody pizza hut and reward their kids’ ASBO tendencies with mcdonald’s for god’s sake. I prepare fresh meals with good ingredients every day and I make sure munchkin has a good range of healthy and nutritional foods available to her every single day of her life – whether it gets mushed into the carpet or not. Why me? I actually give a flying monkeys.

Plus I am a nice person. I like to think I am polite, I listen to people, try to be caring, smile at people at the checkout in asda, I stand in queues patiently, I say please and thank-you, I put my litter in the bin when out and about (and when at home of course.) I say hello to my neighbours and a cheery “good morning” to dog walkers. Can’t this have happened to somebody less pleasant instead?

I realise this way of thinking is not healthy and very self-indulgent. All I want to do is go and buy a large bottle of something cold, dry and white (I’m thinking more chablis than cider here) and go and gulp it down in a quiet corner somewhere. But that would probably be bad for my bowels and therefore ill-advised – but then so is everything else.

The prednisolone is working its way into my body and is making me irritable and jittery. Plus I am hungry all the time – I’ve started watching UK TV Food like it’s some kind of porn channel that I am addicted to. Nothing sates my appetite enough – I need flavour and lots of it. But I feel guilty about whatever I do eat lest it worsen my symptoms and make me even more useless than I already am. If I believed what I read on the internet over the last two days all I’d need to do would be to drink buttermilk for a few days, take some aloe vera and maybe some activia and I’d be miraculously cured. Grrrrr.

I am writing these entries as and when they come to me at the moment with no real regard for what I am wittering on about, nor how un-witty and uninformative they are. I apologise it is merely the steroids talking.

Tomorrow will be happier – going to post some pictures. For now here’s me in hospital last week minutes after the doctor had finished getting a canula into my collapsed veins and I'd finished bleeding all over the floor, attractive: