Sunday, 31 May 2009

Homeward Bound

This week has been half-term and so I have taken the opportunity to do a bit of visitin'. What with the wife's ever-changeable shift patterns and the kids, this is never simple. But the planets and the sun were obviously in alignment this week because a little travel window opened between thursday and saturday. Which meant I had the opportunity to tackle the joys of taking UC on the road (ah, that would have been a different book if Messrs Kerouac and Cassidy had to keep nipping off to the loo every couple of hours... Jack would have had to call it 'On the John').

First things first: eating. Well, the old preds are making me tubby round the middle, thin on top and spotty (oh, I know, bloody gorgeous), BUT, they are also making my bowel behave itself. More or less. Is it me or is forgetting what "normal" is in terms of bowel function a common experience: I am sure I have become so used to elements of pain and/or discomfort that as long as I am not pooing through the eye of a needle I'm thinking "yeah, great, everything normal here". Most 'normal' people would be rushing to their doctor: "what the hell's wrong with me?". Ahhh, you've got IBD. Welcome to the world of thinking abnormal is normal. Erm, what was I on about? Oh yeah, eating. Well, my hosts were more than generous in their hospitality and we dined out at their behest and expense both evenings. So, steering clear of my most riviled food enemies (hello granary bread; hello ice cream; hello fruit with skin; hello blue cheese; hello thai food; big hello to booze, and curse you all) I threw my lot in and ate heartily - even eating olives! And as sure as eggs is eggs, I became totally... constipated. Not even one teeny, weeny nugget of the ol' brown stuff deigned to drop by. Now, there have been many times when constipation is by far the better situation to be in; there are even times when I have positively rejoiced at being bunged up, but this was typical of my ridiculously difficult-to-second-guess insides as pre-trip things had begun to loosen up and subsequently I had become quite preoccupied with travelling in that condition. So, for once, the old colon decided to give me a break.

Which, as it turned out, was bloody lucky. For the return trip home was fraught with toilet related difficulties. A colitic obstacle course, if you will.

1. I had rather brainlessly (for a committed follower of the game) booked myself on the most obvious London bound train for the hoards of Everton fans attending the FA Cup final. Fortunately for me the police were there to kill their joy and searched everyone, me included, for booze before we boarded. So they were a subdued multitude. But the train was packed, and some of them were clearly imbibing something because the toilet queues were lengthy for the whole trip.

2. Upon arrival in London, according to my pre-booked train ticket itinery (in order to reduce the extraordinary cost of travelling by public transport I booked a couple of days before online. When I picked up my tickets I was informed I had to travel on the exact trains stipulated - whether they check I don't know, but I've been fined on trains before and it's an expensive business) I discovered I had 35 minutes to get from Euston to Victoria. Plenty, thought I, I'll nip straight across and then get a nice cuppa. I strolled down into the tube, and as I got to the barriers something popped in my brain. I backed up, and there on a white board, hand written in medium sized letters was a notice informing 'Victoria Line closed 30th May". Shit. Quick scoot back to the tube map. OK, Northern Line to Embankment (4 stops), then change to Circle for Victoria (another 3 stops). That's ok, I can make it. 5 minute waits at both Euston and Embankment, get off tube at Vic with four mins till departure, underground packed, start to quicken pace trying not to push, begin swearing under breath, then slightly over breath, why don't people walk in straight lines, holdall in one hand sleeping bag and bag of souvenir tat for wife and kids in other, weave up stairs, into Vic station, start to run fast (recall Steve Martin in Planes Trains and Automobiles), stop for nano-second to check board for platform (16), increase running speed, jiggle ticket out of pocket in smooth in-run bag/hand swapping movement, shove through barrier, dive through train door, train departs... phew.

Under usual circumstances all this would be hot, sweaty, but fine... you know, an accepted part of using public transport in the UK. But, whilst concluding the first leg of my journey I started needing a wee. By the time I got to Victoria I was relatively desperate. Having run across the station, by the time I got on the train it was painful. And guess what. Every single toilet on the London to Brighton train was out of order. ALL OF THEM. So, I had to hold on until I got to Brighton station. And when I got to Brighton Station (at lunchtime on a saturday I might add) the station toilets were... CLOSED.

Thank the gods I was constipated. But what If I wasn't? What if I'd had flare-up whilst away? What if I was a commuter to and from London every day? UC aside, it would have nightmarish if I'd had the kids with me, they always need the loo.

So, hats off to all you UC battlers who use our wonderful rail network every day: you deserve medals. And thank heavens I only live a 5 minute scooter ride from work.

Thursday, 28 May 2009

I'm Coming Down

This week I have been mostly tapering down my steroids and considering the influence of this on their side-effects. For the last two weeks - up until monday 25th - I have been taking 15mgs a day, so that'd be a 5mg taper from the previous levels of 20mg. My consultant wanted me to take this level for one week only and then taper down to 10mgs. However, as is my wont, I have chosen to ignore my consultant and devise my own tapering method. Actually to claim to be devising my own tapering method is a complete load of balls. What I have been doing is heeding advice given to me by my rhuemotology consultant sometime last year. It's nice to be able to still use his advice: I somehow feel he is unlikely to ever want to see me again having redecorated his waiting room, sluice room and one of his examination rooms in a beguiling new colour I call 'Hematemesis' on my last visit.

The gist of his steroid tapering advice is thus: lowering by one tablet, i.e. 5mgs, a week is too much, especially as you get to the lower doses. For instance, 20mgs down to 15mgs is a 25% reduction in dose, 15 down to 10 is 33% and then 10 down to 5 is a 50% reduction. His argument, which resonated with me, was that, just as you are reaching the lower levels of the steroid tapering by one tablet a week massively cuts the levels of steroid in your system. And therefore may upset the bodies levels as it replaces the artificial steroid with its own (or something like that). Now this could be a load of old cobblers but it sounds reasonable to me.

So, this week I am taking alternating doses of 10mgs one day and 15mgs the next, therefore achieving a steroid dose of 12.5mgs overall - a reduction of only about 15% (forgive the shoddy maths). This I will continue for another week after this and then reduce to 10mgs. This will involve seeing my GP in the meantime because to make this slow tapering work I need more preds than I've been given.

Interestingly, this week as the dose has been lowered I have seen an increase of:
  • Spots. Curses. Shaved the blinkin beard off too, so I've got nothing to hide them under... Strangely they seem focused on my nose, which is rubbish (and, one has to note, would not be hidden by a beard. Unless I was some sort of wierdo. Which I'm not. Well, not in that sense anyway), and continue their dominance of my scalp. Honestly, it feels like braille up there...
  • Roid rage. Yesterday in particular I spent the day with a knotted ball of fury growing in my stomach. Unfortunately, as usual, it manifested itself in me being snappy at the family, and nearly erupted in the cinema (took boy 2 to see Coraline in 3D) due mainly to a huge number of imbecilic adults talking/walking about/reacting to a film for kids as though they were children themselves... grrrrrr

Which leaves me wondering; is it the steroids themselves that create these side-effects or the changing levels of prednisolone and my own bodies steroids, i.e. it doesn't matter much about the size of the dose, more influential are the periods when the dose changes. (there needs to be a ? somewhere in that sentence, but I can't work out where, sorry. I'm going to stop thinking about it before I get angry with punctuation...)

Saturday, 23 May 2009

One day Goodbye will be Farewell

Man, what a week. Physically tiring and emotionally draining. Not enough time to even think about UC. Which is a good thing. Except that, if I haven't got time to think about the UC, that must mean I'm working really hard. Which, to be brutally honest is the very antithesis of my nature... I'll admit it: I'm an idler. I remember my wife once chastising me upon returning home to find me sat in the very same place (on the floor on some scattered cushions, in our unfurnished semi-decorated conservatory (which is pretty much how it remains after several years)) as I had been 6 hours earlier, the only signs of movement having been a pile of used tea bags... Well TMS (thats Test Match Special for those of you who are not cricket lovers) was on the radio...

Is it just me, but having just re-read that paragraph there is something slightly suspicious sounding about the phrase 'a pile of used tea bags'...?

Anyhow, this week, it's been a belter. First of all the deadline for year 7 reports was friday. I have 4 year 7 classes this year, so thats 120 students (approx). Now my union recommends around 50 words a student (I think) which would mean: 6000 words! Half a disertation. And of course I've left them to the last week. As usual. Thank god for modern technology is all I can say. Blimey, back in the old days I would have had to hand write them all! Not that I'm suggesting I would rely on, say, cut and pasting these days you understand.

Apart from that it has also been the week that year 11 finally leave for study-leave. They don't get all those empty weeks before the exams like we did back in my day (revision or beach? revision or beach? revision or beach? beach beach beach Yay!). Oh no. In fact the exams have already started. Now this is a fraught time because to begin with I am always desperately trying to revise as much of the course as possible in class with them before they go. Precisely because I know once they are out of my clutches (like me before) they will do bugger all. And secondly, because I always end up very fond of my GCSE teaching groups - its bloody sad to see them go. And thirdly, this year, my form group are also in year 11, so they are off too. Which is even sadder. I've only had this lot since year 9 (my last form I took from year 7 to 11, it was like waving goodbye to my own kids... sniff. I bump into them around town now and again, some of them even greet me with a hug!), so a couple of years, but I have grown very attached to them, and, I think, they to me. So, as I say, there is a lot of hard work and worry, and a lot of emotion (not to mention all my other classes, year 10 coursework, the reports, my own kids etc etc).

This whole week is rounded off by soemthing called Record of Achievement (RoA), something that also didn't exist in my day. Basically a big, formal, send-off for the year 11's in the local town hall in the presence of the whole year group, senior management, governors, parents of all the kids etc. Essentially they all recieve a folder (their 'Record of Achievement) containing all the certificates they have garnered through their school life, plus CV, personal statements and so on. (Right, I too realise that it won't contain their GCSE certs, and that they haven't even done them yet, and yeah, september would seem a much better time to do this kind of thing - but, hey, I'm just a classroom teacher - what do I know?). Anyway, they get those, plus loads of the kids get subject and sports prizes, there are some speeches/reminiscences by staff and kids, then a buffet and mingling afterward. It's a mixture of dull, blinkin lovely, very happy, and lump-in-throat stuff.

It's about here in the week where the UC starts to rear its ugly, unwelcome head. Because as tutors we are expected to do a speech, about our forms groups. Now, many people think because I'm a teacher this is easy. But: a)some people do short little off-the-cuff (perfectly reasonable) 'you've been great' type speeches, but I HAVE to try to make mine funny and mention them all, b) standing on a stage in front of about 300 students plus, say, 250 parents is absolutely arse-sweatingly, ball-shrivellingly, UC triggeringly TERRIFYING. So I wrote a speech. Went to the toilet about 4 times before my go (I was near the end). Delivered the speech, desperately trying not to think about, or accidently say something about pooing myself on-stage. And was delighted to hear much laughter along with my gags, as opposed to the deathly hush of a hall full of people watching a man uncontrollably poop under a spotlight. And then it was over. And there was a great deal of hugging and hand-shaking, and thankyou's and goodbye's and... then I went home. And, although I'll see them all again around school as they do their exams, it leaves you feeling pretty weird. The only comparison I can think of is when my wife described that feeling you get having finished a really good book, where the characters in particular really pull you in. A sort of hollow, empty, yearning feeling. Because they're not my kids, but I've seen them every day, every morning, for the last 3 years (and 5 with the previous form), and I've had a real laugh with them, and I've told them off loads of times, and I've helped them/failed to solve problems, and I've shouted at them, discussed serious issues with them, given them advice, played jokes on them, had jokes played on me, shared good times, sad times, happy times... and now they're gone. On with the rest of their lives.

And I'm knackered.

Friday, 15 May 2009

Baby, I grew you a beard

Unsettling facial hair photo of the week:

Holy cow, that steroid beard's got thick all of a sudden...

Tuesday, 12 May 2009

Paper Tiger

I'm not one to rant... OK, that's a total, utter, preposterous, fabrication. Ranting is both my release valve and my joie de vivre. My raison d'ĂȘtre, if you will. Enough french though, for ranting is what I am about to do...

Now, far be it from me to denigrate any level of work or employment. Indeed, I have been the holder of many an unfulfilling, even depresssing job. Yes, I've made the triangular boxes that sandwiches come in (didn't last long at all in that one). Yes, I've stuffed envelopes (met Labi Siffre doing that one). Yes, I've been a barman in a horrible, violent pub (sacked). Yes I've worked at M&S (sacked after 3 weeks). Yes, I've been a florist (er...). Yes, I've emptied sacks of mail at the post office all day (technical name - 'Tipper'). Yes I've been a cleaner, both in an office and a secondary school (the lowest point on my own employment journey). And yes I realise there are a thousand worse jobs out there than those few examples, and yes I realise that many people are both lucky and thankful to have a job, any job. And no, I dont think any single one of those is less worthy than anything that I do on a daily basis.

However. I am really struggling to have any respect for whoever it is who cleans/maintains the toilets at school. Not the students loo's - god knows anyone who has to go in there deserves a bloody medal (usual ambient odour of girls loo = fags, usual ambient odour of boys loo = indescribably disgusting smell of a floor soaked in piss for 30+ years... really don't even try to imagine it). No, the person who does the staff toilet. This person is a BLINKIN BUFFOON. I'd like to make it clear that I have self-censored myself there.

It's not the cleanliness, though that ain't great (but I put that down to having to share with other males, we're barely above animals when it comes to watching what we're doing. Or indeed, cleaning up after ourselves. Except me of course). Its the goddamn toilet roll that is riling me. Well, the toilet roll dispenser to be exact. This thing:

(It's called a 'flat-pack toilet roll dispenser' in case you were wondering - I've just spent about 30mins google-image searching for the correct one. I never realised there were so many! There's a whole industry out there...).

The guy who refills this is an idiot. Every single time I use this toilet I have the same problem. Every other day, morning or night (I dont when he does it) he does the same thing. And it must be done with planning, which makes it even more enfuriating. He clearly see's it as a time-saving strategy, so that he doesn't have to fill it every day. He pushes in as many of the tissue refill packs as he possibly can. 'Ahaha' he must think, 'how clever am I? I wont have to come back to this baby tomorrow...' Well you're not clever. You're a pillock. You've pushed the tissue in so hard it wont come out the little slot at the bottom. No. Everytime I pull a piece it just tears. Little strips of loo roll the size of the end of my finger. Or at best, feathery strips a few centimetres long. So that I'm having to ball them up and try to wipe my BOTTOM WITH A STUPID BALL OF LOO ROLL, LIKE SOME KIND OF CRAZY WEIRDO, WHICH SOMETIMES, WHEN THE UC IS BAD CAN TAKE BLOODY HOURS AND LEAD TO ALL SORTS OF UNWANTED FINGER-RELATED UNECESSARY-NESS. STOP IT, FOR GODS SAKE!

So today, after school I went in there and stuck a post-it note on the dispenser. Then imagine my smugness dissolve when as I left school I witnessed one of the deputy heads coming out. Thank goodness I didn't sign it.

Monday, 11 May 2009

Strange games and funky things

Even when you are fully, physically committed, to competition and enjoyment, UC is never far away. On Friday, after school, myself and a selected group of the Staff Football team travelled into mid-sussex to play in an inter-school staff 6-a-side tournament. I was disignated kit-man for this outing, and duly arrived last with the nicely washed and ironed Yr11 team shirts - thats what PE detentions are made for: washing kit... It is always at this point in preceedings when much comment is passed on the current state of male adolescents, as in: What the Hell do they eat? They are all massive. And consequently, so is their kit. Which means much swapping around of shirts, until those of us who are 'smaller' (I'm sure 5'11" and 12st hasn't always been considered small... maybe I've just got a bit of a complex) have managed to get a shirt that doesn't completely cover our shorts. Once kitted up we strode out onto the pitches (nice all weather pitches - much better than our school!) to take in the opposition, 10 teams in all.

There was the usual mix of schools who turn up purely for the fun, with enthusiastic and willing players, schools who have a mix of players of ability and enthusiasm (that's us), and then those that clearly are there for the glory and ring in 6th-formers, county level players and the odd non-league semi-pro (2 were counted on friday - and they're always the dirtiest, playing every game like it really is more meaningful than the broken plastic trophy that has been the prize for the last 3 years...). Our objective this year: get through the group stage and go home heads held high.

Well, we exceeded expectations. With a killer combination of some very good play, gritty determination, last-ditch defending and plenty of hilarious distraction (I give you our first goal: conceded when we were a man down because our sub couldn't get the top covering his strip off - it got stuck over his head - and I stopped to help him... well, he was supposed to be coming on for me. An inauspicious start), we actually progressed from our group as unbeaten winners. We then lost the semi-final on penalties, but won the 3rd/4th place play-off easily. So, all great... But....

There's always a 'but'. During the group phase I was clattered by a fella on another team - not unfairly, just very hard. Fortunately I always wear shin-pads, I have learnt this is a must with my condition. In fact, much to the hilarity of my team-mates my (as-yet unpatented) leg-protection-system includes: one pair of ankle high socks, one pair of doubled over tubular bandage from mid-foot to knee, one pair of shin-pads, one pair of football socks - I feel like a knight preparing for battle. I should have some sort of squire to put it all on for me... Nevertheless at the end of that game I had to check the damage; my wife's last words ringing in my ears "don't get injured". It is these knocks that have so often lead to my arthritic UC symptoms rearing their ugly heads. It was right under my shin pad but there was still a nasty whelt and little early inflammation. This gets into your mind. So I spent a good deal of the rest of the games thinking about my leg. Between each game I was examining it obsessively. I kept rubbing it all the way home. I spent all evening looking at it, trying to determine if it was getting bigger. It grew by about double by bed-time. I lay in bed wondering how big and painful my leg would be by morning... I spent more time and energy scrutinising an 10cm square patch of bruised skin on my shin for those 8ish hours than could ever be considered normal or healthy.

As it happens, it had reduced by morning (at this point I should make my doctors usual disclaimer: that's because I'm on prednisolone), so by midday saturday I had stopped stressing about it. Stupid disease.

I reduced the prednisolone by 5mgs this morning. Now on 15mgs a day.

Sunday, 3 May 2009

Drive in Saturday

The Saturday routine.
Woken up by Lovely wife at 6.30 with a cup of tea.
Joined in bed by son no. 2.
Drag myself out of bed and neck cuppa by 6.45, pulling yesterdays discarded clothes back on.
Try not to grunt too negatively when bid a chirpy good morning by lovely-wife upon reaching the downtairs.
Out to car, drive to hospital.
Not for me! Lovely-wife working, (NHS long-day shift: 7.30 start, but expected to be there by 7.10. And 8pm finish, though paperwork often extends this to at least 8.20 - Yep. That's a 13hour shift. And she doesn't often get much more than a vague lunchtime in the way of breaks either).
Drop her off, drive home, stopping for a paper on the way - I pass about 30 newsagents, but always stop at the same one. I don't know why.
Get home to be be confronted by son no.1.Now he is just knocking on 13 years old, so if he is up at this time all initial conversations are fractious affairs...
Rustle up the kids some breakfast - if I don't do this son no. 1 will not have any. Out of laziness...
Begin my second cup of tea and settle down with the sports pages. One of the redeeming aspects of taking lovely-wife to work on a saturday is being up early enough to read the paper without feeling guilty. Obviously reading the paper (saturday is the only day I manage) is something I have only recently been able to return to, as the kids have reached an age where they do not need entertaining by me all the time.
If I am lucky the boys might entertain themselves adequately right up until 10.45 when we often go swimming. Which means I can read almost all of the paper!
This is always accompanied by several further cups of tea. My name is rich and I'm an addict.
The rest of the day gets made up as we go along...

But this saturday... About 10ish, am reading paper and enjoying 3rd or 4th cuppa whenthe phone rings. Son no.2 answers. I can't hear him, so assume it's for one of them (I really recieve the least phone-calls in this house. By a massive margin. Son no.1 uses it so long for so often, he frequently runs the battery out on the handset. Usually just before I do get a really important call...)
Son no.2 appears, profering me the phone: "who is it?"
"Did you ask?"
"Some man..."
I take the phone (aware that 'some man' has been able to hear our brief father-son interaction).
He replies. I recognise the voice immediately. It's my consultant. So surprised am I that I spring up! Like a naughty boy caught on the hop.

I shouldn't be surprised, seeing as I finally left a message for him, via his secretary, on friday afternoon. But I never expected him to phone on a saturday. I thought he'd be at the golf club. So, that's another ill-founded judgement I'll have to alter. Don't you hate it when people exceed your expectations?

The upshot of our conversation was that he agreed with my suggestion that I don't want to try anymore new meds for a little while - 3 failures in 2 months is enough for now. And that I could go for a slow taper off the preds, down to nothing with no other drugs! You know, just to see what happens. This should coincide nicely with my next appt in clinic in June. But, the main thing he said was: if I continue to have problems he is going to send me to London to see a colleague who is an expert in UC, at UCH. Wow! That is really good news. I am going to really have to reassess my opinion of the old bugger. I looked this new guy up on the net, he's there! And he's written loads of papers about UC! And... well I didn't find much else out, but at least he's the real deal.

After that, the sun was out, so me and no.2 went down the park with the football. No.1 wouldn't budge off the sofa...