Wednesday's diary on a Thursday 6.4

This week in a last ditch and perhaps futile attempt to claw WDOAT back from the brink of utter tediousness, you’ll notice I’ve included a picture of a toilet seat that has been painted to resemble the gaping jaws of a large reptile or possibly a dinosaur. Look closely and you’ll see the toilet rolls have been strategically placed to represent eyes. I don’t know if a picture of a toilet seat that has been painted to resemble the gaping jaws of a large reptile or possibly a dinosaur with strategically placed toilet rolls for eyes is enough to pique the interest of anyone who happens upon today’s WDOAT? Some may even question the relevance of a picture of a toilet seat that has been painted to resemble the gaping jaws of a large reptile or possibly a dinosaur with strategically placed toilet rolls for eyes. Relevance aside, let’s just take a moment appreciate the extraordinary effort that has gone into it. Someone has taken a lot of time over this. It’s kind of clever and stupid all at once. It would be great in the toilets at a zoo. It’s a painstaking piece of work. You could call it art. You might even call it the Cistern Chapel. But that would be very silly. As much as a toilet seat painted to resemble the gaping jaws of a large reptile or possibly a dinosaur with strategically placed toilet rolls for eyes is quite a witty visual pun, and may raise a smile, I can’t help thinking that if I were pointing Percy at this particular porcelain, all those teeth might make me feel a little vulnerable.

Wednesday 10th June:
7.45am Change bag
1pm Change bag
8.25pm Change bag

Medication:
Breakfast 6 x mesalazine 400mg
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Comments:
Nothing to report. Sorry.

GQ/UC

The year is 1988. I’m making a call in a telephone box near the clock tower in my hometown. It’s lunchtime and I’ve made the 10 minute walk from art college to get a couple of hot sausage rolls, which I’ll eat on one of the benches in the old churchyard. I only left school a few months ago and it’s still a novelty to be in the town centre during a weekday. As I lean against the cold glass I notice a magazine in the litter bin outside the phone box. It’s lying on top of all the regular rubbish, but it’s clear it doesn’t belong amongst the flimsy sweet wrappers and greasy chip papers. It’s too glossy, too new, too crisp, and at half an inch thick, it just looks too solidly respectable. I recall fretting that someone might steal the magazine from under my nose before I finish my call. But no one does, they just hurry about their business, unaware of the magazine that is having the same effect on me as Wonka’s Golden Ticket had on Charlie Bucket. I feel myself being drawn in and after what seems like forever I leap out of the phone box as if coming up for air. Finally I have the magazine in my hands. It’s heavier than I expected. The spine is ruler straight and without creases, making me believe its pages have never been turned. In the top left hand corner of the front cover are two bold letters that lightly kiss one another leaving no air between them – GQ. I turn the pages as if handling gold leaf; my eyes linger hungrily over the advertisements for suits, and for shoes, and shirts, and aftershaves. The unfamiliar names of the makers are a foreign language to me. I brush my fingertips lightly across the pages, as if feeling the fabric of the clothes printed on them. Each page seduces me and encourages me deeper inside. By the time I reach the back cover I’m almost breathless. Turning the magazine over I read those two letters again, mouthing them silently, slowly. Right now the G and Q mean nothing tangible to me, but I already have a feeling that in time they will come to mean something special. Between the covers of this magazine I have discovered a different world, a world unrecognisable from the one I live in. It’s a world of style, of suave sophistication, of elegance, of cocktails, far flung destinations, colonial clubs, nightclubs and sex. And I find it in a bin on my way to buy sausage rolls.

Even before I found that copy of GQ I was into clothes. I’ve always liked to put a bit of thought into what I wear. I like details: an unusual collar, or an oddly placed pocket, or a nice lining, an unusual print, fancy buttons, anything a bit different. I’ve never been what you might call a straightforward jeans and t-shirt kind of guy. Don’t get me wrong, I’m no label snob, I couldn’t tell you what make half my clothes are. It doesn’t matter to me if it’s Oswald Boateng or Oxfam. So as something of a self-confessed dandy, I’m ashamed to admit that in the weeks following surgery I let myself go a bit. Even now I shudder at the memory of going to Sainsbury’s in trackie bottoms. Tracksuit bottoms. The horror. But the scariest thing of all is I didn’t care. Not a jot. I really didn’t give a damn what I looked like. The only thing that concerned me was comfort. And those trackie bottoms were comfortable. They weren’t too tight, there was no belt digging into my swollen abdomen, they were easy to pull on. The perfect post-op pants really. This sartorial slobbery continued for a good few weeks, until one day I was making my usual trip up Walthamstow Market to do some shopping, when I suddenly felt a bit self-conscious. Something didn’t feel right, like I was in the wrong skin. And I realised it was my clothes. I no longer felt comfortable in my comfortable trackies. Looking around me I saw that I was dressed like everyone else. At that moment I realised I was getting better. I was beginning to think about my appearance again. For a while I didn’t have the energy to think about anything other than getting through the day. It was a no frills existence. A trackie bottoms life. As far from the hallowed pages of GQ as you can get. But now I’m back in my old clobber. And that suits me just fine.

The key to the door

The RADAR key gives you access to 7000 public toilets across the country. It got its name because it’s so big it actually shows up on radar. Seriously, it’s massive. I measured mine at a whopping 10cm. It’s the sort of thing you’d expect to get if you were given the key to Chicago. Honestly I think they must have modeled it on Dracula’s back door key. If it doesn’t open pirate chests I’m a Dutchman. It’s truly a colossus of a key. Try it in the lock first, but if that fails you can use it as a battering ram. How disabled people are meant to carry it around is beyond me. Just picking it up nearly put me in a wheelchair. I’m thinking about taking mine down the scrapyard and seeing what they’ll give me for it. Christ it’s big. I won’t be able to keep it in my trouser pocket, I’ll get arrested. You can order a RADAR key from here, although I’ve heard it can take up to 4 months to arrive. Which is understandable, they probably have to close down entire motorways to transport them. My mum got mine from her local mobility shop. It cost £5. And then £4,799 to post it.

Also opens with the aid of a RADAR key.

Wednesday's diary on a Thursday 6.3

Possibly the most pointless and boring Wednesday themed item on the internet, it’s WDOAT…

Wednesday 3rd June:
6.50am Change bag
2pm Change bag

Medication:
Breakfast 6 x mesalazine 400mg
Dinner 4 x azathioprine 50mg
Bedtime 6 x mesalazine 400mg

Comments:
Stools back to normal after the weekend's sickness.

Sick of no sick pay

Unless you happen to be an entirely self-sufficient hermit living in the remotest cave in the remotest corner of the remotest island of the most remote group of islands off of Orkney, one way or another the financial crisis will have had some impact on your life. All across Britain belts are being tightened. And in some cases belts are being sold for money to buy food. These are worrying times for us all. One thing that concerns me as a freelancer is I don’t get paid for time off sick. For the first 3 months of this year I wasn’t able to work. I managed a couple of days here and there, but I wasn’t earning nearly enough to cover my mortgage and other outgoings. Fortunately I had my UC fund. As a self-employed person with an illness that can prevent me from working, I figured a while back that it would make sense to always have a few quid in the bank for a rainy day. Or in my case about 90 shitty days. So I’ve squirreled away a pot of money in the bank (earning bugger all interest these days, by the way) just to cover my sick periods. I need to have that security there. It means that when I go in for my next operation later in the year I don’t have to worry about money, and I can just concentrate on my recovery. I won’t need to rush back to work before I’m ready either. A small part of me resents having to have a UC fund at all, but that’s just the way it is. As long as I have UC I’ll have a UC fund. What is hard to stomach is the loss of earnings. I recently had to give my accountants all my tax gubbins for the year and I’d estimate my annual take home is down by about 20%. When you start to count the cost like that you realise that ulcerative colitis doesn’t just spread through your colon, it spreads through your whole life.

Below is a chart, which illustrates the effect UC had on my earnings over the last year. It’s awfully vulgar talking about money, so I’ve used kittens to represent my pay. As you can see January, February and March were lean months kitten-wise.

Portaloony invention

Introducing the convenience that pops up at your convenience. Yes, it’s a cardboard flatpack loo. The Brown Corporation who manufacture the imaginatively named Shit Box are clearly aiming for the festival crowd, but I think they may have inadvertently stumbled across a whole new market in people with UC. The Shit Box would mean when that when urgency strikes we no longer have to make it to the toilet in time, we simply have to make the toilet in time. And apparently it only takes two ticks to put up, which sometimes is all we have. It also says on their website that the Shit Box can be used time and time again, which in the case of someone with UC, is just as well.

How was your weekend?

It’s around 1am Saturday morning when I awake. Instinctively I check my bag. It’s almost solid to touch. For some reason it brings back a childhood memory of the hard, plastic water canteen that would sit snuggly inside my Action Man’s jacket pocket. When the bag is this full it restricts your movements. Because it has no give, the bag won’t fold with your body, so you have to keep as straight as possible, which means sliding out of bed like an ironing board. As I stiffly make my way to the bathroom I hear a sloshing sound coming from below. Perhaps an Action Man waterbed would have been a more accurate comparison. I kneel beside the toilet and go through my routine. First I place a big handful of toilet paper in the bowl to reduce splashing, and then I tear off more toilet paper in sheets of three and fold them into sausage shapes for cleaning the opening of the bag. Once I’m all prepared I carefully hold the opening over the toilet and release the contents. Usually the stool is reasonably solid so I have to help squeeze it out, but this time, whoosh, the bag empties like a burst dam. It’s the consistency of watery gravy. Before I have time to process any of this I realise I’m going to be sick. I quickly assume the position: my head lunges out over the bowl and my knuckles ram hard into the floor tiles. The first heaves are the most violent and brutal, coming thick and fast one after the other, before becoming more sporadic and weaker, like the thunderclaps of a storm passing out of harms way. Dry heaves signal the end of my ordeal and I pull myself upright, the tears in my eyes refracting the glare of the ceiling spotlights turning them into hot white twinkling stars that make me feel dizzy and sick all over again. I crawl back into bed to discover my duvet has lost its power to provide warmth. Shivering, I rewind through the day, hoping to stumble across a clue to the cause of my sickness; blueberries, ham salad, pears, coffee…Sleep intervenes before the case is cracked. An hour or so later I awake again to find my bag has refilled and a choking nausea is creeping up my windpipe. I make it to the bathroom in time for another wretched white-knuckle ride, which is not to be the last before sunrise, not by a long shot. In the cold light of day, exhausted and drained of all fluids, I come to the conclusion that I can eliminate blueberries, ham salads, pears, coffee and everything else I ate the previous day from my enquiries. I decide I have picked up a bug. A sickness and diarrhoea bug. I believe it happened during the chaos in the public toilets (see previous post.) With one thing and another I wasn’t able to wash my hands and be as careful over my cleanliness as I would have liked. Having an exposed hole directly into your insides must be like a motorway for germs. I’m certain this is the cause of my sudden illness. Sickness and diarrhoea is nasty enough without the added problem of a colostomy bag continually refilling itself like the magic porridge pot. Saturday is spent on my sofa drifting in out of consciousness, the sound of children playing outside punctuate my dreams, whilst Everton miss out on the FA Cup, Susan Boyle misses out on Britain’s Got Talent, and I miss out on the best weekend of the year so far. Truly sickening.