Thursday, 20 May 2010

Blue eyes cryin' in the rain

16 packed days since my last post, during which I have not updated because any amount of writing served to remind me that I was imminently delivering another speech at the Record of Achievement ceremony. I won't bore with the details (I wrote about it last year, see here), but suffice to say I was expected to deliver a speech to 300 students and their parents, so about 600 people in total, to recognise the end of school before they embark on the final push toward their exams. Due to my own stupid ideals, rather than produce something short and heartfelt like most of the other staff speaking, I have the need to appear 'funny'. And thus create a whole new level of stress for myself. So, any contact with a keyboard sparked a churn in my guts as the fire of public-speaking-fear was ignited. Like being back at school myself: stressed because I know I've got to do something, but too stressed to do something about it because that would mean facing up to the thing that was causing me stress and acknowledging that I hadn't done anything about it, and so inducing further, dangerously repressed, stress... Anyway, I did it on Tuesday, with only two preceeding toilet visits, and no bowel evacuations on the stage. Which is, of course, nice.

Despite all this piffle I have been staying in touch with the UC blogosphere. And in particular was provoked into thought by this post on the The Knife you See, and a comment a friend made to me about how far down the 'chronic illness' road I have travelled. At the start we have questions, many questions, and duly recieve answers. Answers that I think we believe. In time the answers don't seem to hold up. May be they stop working. Maybe new questions render them redundant. So, next come the questions that cannot be answered so readily. These questions begin to give us an insight to the methods of finding answers to our original questions. We find that the answers to our new questions are unobtainable or subject to new leaps of faith. A crisis of confidence occurs. If this were a religion we might be doubting our god. We are forced to find a new framework within which we can restore belief. I stopped asking questions and started to look for the answers myself. First from without, and finally within.

I still do not understand why my UC causes massive inflammation in my limbs. I have been told unequivocally by a rhuematology professor that this is the case. At the time when the gastro docs were assuring me the only stone left to turn had a stoma under it, the rheumy prof pretty much told me that was the only course of action. I had made a big fuss for a second opinion through which I had been referred to his care. He basically kicked me into the long grass. I was damn sure they were wrong then. I still am.

I am not anti-surgery. I am not anti-drugs. I have not lost all faith in western medicine. What I am is sure that this disease is so variable and varying that we have to break out of the regimented methods of dealing with it. So many people I know have had to take exactly the same journey: 5ASA's, preds, azathioprine, 6MP, Methatrexate, Infliximab... surgery? Colostomy? Ileostomy? Perhaps peppered with alternatives along the way. But look at the blogs. People finding success, and indeed failure, with so many combinations of approach. But different. Different. Different.

I was trying to find a way to express all this when I stumbled upon this in an interview with the venerable old Willie Nelson:

"I think everyone has to decide for themselves. I think there's a scripture in the Bible [Luke 4:23] that says: "Physician, heal thyself". I think we all have to look at ourselves and say OK, I think this would be good for me, or I don't think this would be good for me..."
As it happens he was talking about marijuana! But I like the sentiment.

Tuesday, 4 May 2010

Feats don't fail me now!

I passed 6 months drug free last week, sunday to be exact. I left it unmentioned; the first monthly increase passed without comment. And then BANG: this...

It started wednesday. I went up to London in the evening to a gig with a good friend of mine who lives up there. An entertaining evening was had, but on the last train back to Brighton somewhere in my head a little voice could be heard... "there's a familiar old pain in your left shin richie... don't ignore it...". And so began, for the first time in a while, that feverish compulsion to keep rubbing my leg. Brilliant. It's nearly midnight, I'm stuck in a packed carriage and I cannot stop myself repeatedly pulling up my trouser leg and rubbing the offending area... Still I wouldn't need to fight for a seat: who wants to share space with a leg rubbing loony?

By morning there were two inflamed areas on my left leg - not massive - and a small area on the top of my left foot. By the time I got home from school (after parents evening) both feet were massive and my school boots could empathise with the footwear of the Hulk. I was in agony, not helped by having to repeatedly stand to greet each new set of parents. Not happy. By friday they looked as they do in the photo - I went to school (too much GCSE Controlled Assessment to miss a day) but in my unlaced converse, doing the 'old-man shuffle' round the place.

So, this has raised several questions: 1) Whyohwhyohwhyohwhy? 2) What do I do now? 3) What if...?

1) Why? What was the trigger?
  • football injury - on sunday the 25th April I played football. In the last 10 minutes I had a fairly bone-jangling collision with a defender (totally fair: we were both running for the same high ball, looking up at it rather than at each other... BANG!) in which I suffered a bloody painful 'dead' leg (I've just read that link myself - bloody hell, it sounds much worse than I've ever thought!), that caused me to sit out the end of the game and limp for at least 3 days. I know these facts and the info in that link are somewhat damning but... it was in my right leg.
  • stress - could be that I've let my old nemesis sneak up on me again. I am always guilty of subconciously burying stress, even in these mentally enlightened times: we are getting to exam-end of business at school after all. And as everyone in the English education system knows, if those kids don't meet their (inflated-for-challenge) target grades, there's only one person to blame... me.
  • I've had a cold - feeble, but true... I'm not milking it. It's not Man-Flu. It's just a cold. Annoying nonetheless.
  • sloppy regime - no, I'm not talking about my bottom here..., but the fact I have become extremely blase in using the NLP and Hypnotherapy tapes. Why? Coz I've been well and lovely of course! Come on, when everything in the garden is rosy good intentions are so easily loosed for something more interesting. I reckon it had been nearly a month since I'd listened to either of them. I have to admit I was guilty of slipping back into some of my bad habits too: the ranting had restarted (at the TV mainly, several key-characters in the imminent general election,  the infamous 'bird' incident described last post...), the grumpiness had resurfaced, the general pessimism was alive again... Mmmm.
  • A combination of all of the above?
  • The UC is waking up?? Not contemplating this one yet.
2) What now? Well, at first I thought I'd have to get back to the rheumatologist, but since they discharged me in what I see as a joint-dept conspiracy to get me onto azathioprine, which I was refusing at the time (AND QUITE RIGHTLY TOO I MAY ADD. Bastards) ("your arthritic issues will only improve if you deal with your bowel symptoms", "But what if they're not related?", "They are", "How do you know?", "They are", "Yes, but how do you know?, "They are"...), but that would involve getting a new referral from my GP. But then I thought: Bollocks, just get back on the tapes Rich, this is just a blip. There have been so many conventional medicines that I have kept up despite much worse in the way of symptoms or side-effects (Aza, Asacol, Salazopyrin, 6MP, Pentasa, etc), always thinking (and, indeed, often being told) that problems would be ridden out. Well, maybe this NLP stuff isn't going to be a totally smooth ride, but I can't bin it yet. Not after my healthiest 6 months for nearly 7 years. So, I've hit the tapes hard...

3) What if... my bowel symptoms remained negligible at the expense of an arthritic flare-up every 4 to 6 months? Would I take that? Well, it's been 5 full days since the first signs of the arthritis and the swelling has gone, though the feet remain sore... so... say, you're offering 5 - 10 days of pain and hobbling for no bowel symptoms... I'd bite your fucking hand off.

Finally, Lovely-wife chastises me for photographing my various swellings (of the UC variety!). "It's for the blog" is my standard retort. But she knows me better than that. I have shown that picture to at least 8 of my colleagues and friends today... They're interested! Of course they are. And I'm just doing my bit for UC-education.

I must put a picture of my normal feet on here at some point though.