Cognitive Behavioural Therapy #1

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

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

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

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

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? ;)

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

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?