Sunday, 25 October 2009

Train in Vain

This is such a great picture. It is the Granville-Paris Express overrunning the platform at Montparnesse Station, Paris, on 22nd October 1895. I was reminded of it when it appeared on Newsnight (BBC) the other day - I remember seeing it on a poster or album cover in WHSmiths or Woolies when I was a kid. Apparently only one person died, a woman who was on the pavement outside...

While i was looking at it, it made me reflect on the last few weeks, and I concluded that I currently feel similar: suspended, after an abrupt end.

This term has felt long and arduous. Perhaps because i have an unbalanced time-table this year. Undoubtedly because in my year 11 class I am teaching some of the most obnoxious girls I have had for some time. Factor into that an incompetent boss, departmental discontent, and the continuous demands of constant change in the profession. But most probably the cause is this being the first term - always the longest.

At some point I hopped on the train. Its destination was 'a place of better health and well-being', but I thought I could just make out, under those letters, the feintest outline of 'a cure for UC'. Powered by school, home and health demands the train has careered along, increasing speed to make up for time lost to this blinkin disease (the driver of the Granville -  Paris train was fined 50 francs and given a 2 month prison sentence because the train was speeding), making only a short daily stop at the quiet stations of hypnotherapy. And, you know what, I've been enjoying the ride. Gazing out at the passing landscape through windows of positivity, feeling energised and confident that I can reach these destinations. In the last week, the train has really hit full speed: school has been mental, home has been crazy, workload is massive, car is being repaired, wrangling with former internet provider who won't except I cancelled my account (threat of debt collectors! Its £14 for gods sake...), steroids are running out, half term has arrived, I've got a nasty cold...

BANG! Here we are. Hanging. School has suddenly stopped. Lovely-wife and i both have a weeks leave. Everything is calm... but...
  • I have 8 prednisolone tablets left. I am taking one every other day (thus 2.5mgs a day). I have no choice but to stop them. Finally. After something close to 20 months...
  • I have a cold. Not swine flu. A cold (bang on the start of half term week... soooo typical). So often in the past colds or other ailments have precipitated a flare up... (and I'm not over the pneumonia paranoia yet either - see this post from 2008).
  • These two evil little thoughts are dancing round each other in the dastardly courting ritual that precedes the conception of a new, even more powerful, negativity loop...
So I'm hanging. But the difference is, like the passengers on that train, I'm going to dust myself down from this set of circumstances, get on the next train and carry on my journey. Tomorrow I may take my LAST prednisolone tablet.

Thursday, 15 October 2009

Teach Your Children

Having children as a UC sufferer adds a layer to the whole experience. First and foremost is the constant need to suppress the head-voice that likes to remind you that most "current research points to UC being of some sort of genetic origin and therefore likely to be a family trait...". The last thing I want to do is foist my anxieties on my boys (particularly as I'm currently working on the premise that dark mental forces may be at work here), but likewise one never can stop oneself from surreptitiously checking that all is well in the toilet. Boy 2 has concerned us, on occasion, when complaining of stomach pains etc (as every child does of course), and also because he goes through periods of immence flatulence (he enjoys telling tales of unidentified trouser-coughs he drops at school, then stands back and watches as the chaos ensues...), though these are mainly linked to dietry factors (my greatest fear is that, like me, fish and chips mark him fart like a foghorn - of course he eats stuff like that rarely, and I never touch em anymore. My guess is it is the oil they fry in).

However, I have always been pretty upfront with them about what is wrong with me. Naturally I have spared them the gory details, but they often ask me UC related Q's and I answer as frankly as I can. Boy 2 is also very aware of the blog. When I pick him up from school, after our inevitable daily trip to Tesco (how much bread can one family eat?!), we get home and his first port of call is the PC to spend time on ClubPenguin. This is a social-networking site for primary school age kids - its very well run and monitored (though I recently found out, to my horror, it's a offshoot of the evil Disney corp), the kids are little penguin characters and they roam around the vast penguin world chatting to other penguins - no names are allowed and their conversations are limited to stock phrases - playing games and other penguiny stuff. Anyway, he likes to get on it straight away as he is not allowed on the computer after 6pm. Unfortunately for him, once the PC is on I have to put in a password before they can access the web (thus neither gets on without my knowledge - aha!), which often means I say to him "you can go on after I've checked my blog and emails...". And so he is often stood at my shoulder when I check the blog early evening. So...

The other evening I was sat at the table with him when I noticed a far off look in his eyes. Hello, he's thinking about something, I thought:

"You alright son?"
"Yeah. You know your blog?"
"Oh yeah"
"Can anybody read it?"
"Yes, it's on the internet so anybody can look at it."
"Do the kids at school read it?"
"Oh blimey! No. They don't read it..."
"Haven't you told them about it?"
"No. I wouldn't tell them about it (heaven forbid!). I don't really tell anyone about it. It's kind of anonymous - I don't really put my name on it - no one would know it was me that wrote it"
"How do people find it?"
"Well, you could search for it."
"Wouldn't the kids at school find it?"
"No, because you would have to do a very specific search, not my name for instance. You'd have to be searching about the illness or something."
"Like on Google?"
"Yeah, that's it"
"So, you could search on Google for your illness and your blog might come up?"
"Riiiiiiiight. So I'd just have to type cerebal palsy into Google search and I could find your blog...?"

That's when I spat tea across the table. God alone knows what he has been telling the kids at school, or his teacher...

Sunday, 11 October 2009

Nine to Five

Stood in front of a year 11 class, sweat pricking my brow, shirt sticking to my back. I'm having to lean on the table, the cramps are cutting across my whole abdomen, the table is keeping me upright. I am breathing hard through gritted teeth, knuckles whitening as I bear down harder on the desktop. Some of the kids are staring at me, others just getting on with work, or not. I leave the room, pass a colleague who glances at my haggard features, pallid, a week-and-a-halfs growth, but says nothing, fight my way to the deputy heads office, ask to be sent home, phone my GP, and am admited to Royal Sussex County Hospital within a few hours...

And thus about six years ago I had my first massive flare-up and hospitalisation. I was in for about six days. It was the manifestation of a particularly stressful time at school. Stress crystalized in the failure of the above mentioned year 11 class (of potentially high achievers) in completing their coursework to an expected standard. They were truly some of the laziest little buggers I have ever taught, and getting them to even satisfactorily finish their coursework almost killed me. I remain convinced of the importance of my state of mind in that particular episode.

I reflect on this because this term has seen things getting more pressurised by the week. Last week our department took all of year 7 (330 kids) out on a combined geography and history trip over three days, a feat of human mobilisation to rival Dunkirk. This week has piled on where last left off. Due to un avoidable circumstances I had only one period of non-contact time in the whole week, and that was on Monday, so the rest of the week was solid teaching. This was exacerbated by the lovely-wife's shift pattern for this week (tues, weds, thurs, fri) which has also put me on primary child-care duty. Thus at the end of every teaching day I am required to stuff everything i might need into my school bag, charge down the corridor battering year 7's out of the way, and gun the motor out of the school gates before the bus driver has finally relented, facing the inevitable, and opened his doors to the orc-like hoard amassing around the front end of his bus. Driving across Hove is a rage-inducing experience at the best of times, but under time-pressure becomes potentially volcanic. The thumb-screw of fighting through the traffic is then tightened further by the utterly ridiculous task of finding a non permit-holder-only parking space (who the hell is driving to pick up their kids from school in these environmentally fragile times anyway? Oh, yeah... me). Once done, the gauntlet of the primary school playground is run - trying not to get collared by the parents of kids who have siblings at my school - why do so many parents want to conduct parents evening in public? Grab the boy and get the hell home. Where it's HW, cook dinner, pick up lovely-wife (about 8.30), and then finally sit down to at least an hours schoolwork. Add into the mix this week:

Open evening on thursday - remain at school until 9.30pm in order for local parents of year 6 kids to come and look round the school. This involves lots of glad-handing parents in my classroom, over seeing 'fun' geography activities for the year 6 kids to take part in and win sweets, tow the school line, make small talk with governors, blah, blah, blah (with the added pleasure of having to take my own boy (No. 2) with me due to lack of childcare and lovely-wife being at work)...

Boy 1 busting his new ipod touch (I told him not to buy one - he has no concept of money or saving, we link his pocket-money to household jobs, which he never does so gets very little. He also refuses to get a 'real' job (paper-round or something) and so when I am just getting through to him about the 'value of money' and the 'benefit of saving', his birthday comes around... people are very generous and he gets a lot of cash. Which he blows instantly on an ipod touch, despite having a nano we bought him for xmas... Well, I refused to make the appt at the apple shop. He wreaked his revenge by making the appt at 5.15 friday afternoon.

So, I make the dash to boy2, in the foulest rain we have had for weeks, and begin the tortuous run into to town at rushhour. Half way there my car is driven into by a Taxi. Literally DRIVEN INTO. I was stationary and he just drove, head-on, straight into the side of me... I get soaked standing in the rain trying to write the guys details on a rapidly disintegrating reciept I found in my wallet (this takes ages as he could not speak english). Then we continue onward having to sit in a traffic jam into town for a further 40mins... when I finally make it to the apple shop they, in all their wisdom, restore all the settings and insist it will be fine now, despite my protestations that I HAVE ALREADY DONE THIS... When I get home I have to spend an hour and half on the phone to the insurance company, until my phones battery runs out...

I mention all this (somehow looks so petty on the page...) not because I think my life is particularly stressful. But because these are the weeks when the UC starts to rear its ugly head (into my bottom!?). But... Not this time. Au contraire. Not only have i remained pretty damn calm (relaxation therapy every eve), I have actually reduced my pred dose to its lowest level in over a year! I'm gonna be off these bastards in less than two weeks...

Sunday, 4 October 2009

Red Letter Day

I received this letter in the post at some point a week and a half ago. It has been a good barometer of how much more positive I have become. It is a copy of a letter sent from my consultants clinic to my GP, updating him on my decision not to start infliximab. It describes my mosr recent appointment and then goes onto say:

His weight is 80kg [1]. As you know he is coming back to make a decision about the infliximab, in fact he still wants to hold off [2]. He is going to try an alternative; something he thinks is CBT [3] and is by a gentleman called Guy Cohen [4] who has a website [5].
When I read this the first time ancient forces of anger were awoken from their slumber. They broke this passage down sentence by sentence...
1] I know I've put on weight - I dont need to see it in black and white. I can tell by the fact none of my work trousers fit me comfortably and my work shirts splay revealingly at the buttons...
2] Does he know? How does he know? I didn't tell him - don't tell me I'm supposed to believe in the existence of some great NHS communications system (aren't they all supposed to be on the same computer system now or something...) pfff it'll never work. And, yes, I do still want to hold off.
3] I actually said I thought it might be similar to NLP or CBT... not that I really knew the difference at the time... but this makes me sound like some crackpot who has just read something batty in the daily mail.
4] Why have they named Guy? I was puzzled when she wrote it down on my notes, but astounded to see it included in this letter. 'a gentleman called Guy Cohen' makes him sound like some kind of victorian bounder preying on weak minded society girls...
5] And this final bit! This was the red rag to my angry bull... 'who has a website'! What I read through the red mist was: 'he's found some guff on the internet and is buying into it like a gullible fool, snigger, no really, he'll be playing the nigerian lottery next, guffaw...'. There was something sooooo condescending about that turn of phrase: who has a website, I could feel their eyes rolling.

So, when the lovely wife got home I thrust it beneath her nose and demanded she share my wrath. Fortunately she is better than that. "You do weigh 80 kilo's which is good, because putting on weight means the UC isn't busy", uh, yeah. "They probably already sent a letter to your GP, or assumed you'd been and told him what was happening like a concientious patient", ahhhhhh. "Did you call it CBT?", errr kind of, "Well, there you go then...", yeah but I said NLP too..."does it matter?", erm, well, no, no I guess not. "Has Guy got a website?". Yeah, but... "but what? I just says he has a website, and he does, so...". Oh look, GIVE IT TO ME, you just don't understand...

But of course she does. It is just a letter informing my GP what is happening, for which I should be grateful really. And was it worth getting angry about anyway? Even if it had said I was defying all that was right-thinking in the world of western medicine and thus would now be considered an imbicile? No. I doesn't matter what anybody thinks. What matters is how I think.