Thursday, 29 November 2012
In 1988, my surgeon told me I had two years left to live. That sounds melodramatic doesn’t it? If not slightly ridiculous. I thought that at the time. I was pretty sure for the whole of those two years that I didn’t believe him for a second. Even when my mother told me he’d phoned her (which probably broke all kinds of ethical codes) and told her the same thing. Then, when those two years were up, and all kinds of tests - pinching myself, taking my own pulse, realising that my legs desperately needed waxing - proved that I was most definitely still alive, I fell into a big, black, horrible abyss. Not a real one. A metaphorical one. A Churchillian black dog (as opposed to the white one that sells you insurance) kind of thing. I was depressed. Properly depressed. Diagnosed depressed, and provided with both a Community Psychiatric Nurse who visited me at home every two days, and a prescription for anti-depressants. The nurse and I concluded that I was reacting to surviving the death sentence I was convinced I’d never believed. A bit like when you’re in a car crash and you handle it brilliantly at the scene, then go home and shake for three hours. That kind of thing. But bigger. The nurse was great; we got on brilliantly and she probably kept visiting me for longer than she needed to just because we enjoyed each other’s company. We even stayed in touch for a few years afterwards, but eventually she went back home to Sweden, where she was from, and she was out of my life. The anti-depressants were a different story.
I only tell you that tale to give context to how I started on anti-depressants; I’ve been taking them on and off – more on than off – ever since. I stopped them for a year or so when I got pregnant, then there was research that showed they were good at keeping Crohn’s in remission, so I went back on them. Then a few bad things happened – deaths of loved ones, jobs lost, that kind of fun stuff – and I stayed on them. The ones I take are currently called Dosulepin (they were called Dothiepin ‘til a few years ago); they’re part of the tricyclic family, which is the more old-fashioned, these days less-favoured group of anti-depressants. When SSRIs first became trendy in the late 90s, so did apocryphal stories of people who’d never been violent murdering their entire families after taking Prozac for a week, so my GP and I decided I shouldn’t change over to them. It probably wasn’t for that reason exactly, more that I’m an uppy kind of person and SSRIs are uppy too. Tricyclics help you sleep, which is more the kind of thing that works for me. Every night I take Dosulepin, followed by enough codeine to put Mike Tyson to sleep, and I still get regular bouts of insomnia.
I have never been depressed like that first time again, thank goodness, but I did come to the realisation that taking anti-depressants was a pretty sensible option for someone with chronic disease – not just Crohn’s, but any chronic disease. In most instances, when people feel low (that’s low – miserable, unhappy, desolate even - not clinically depressed), there’s a way out; a new route you can at least try to move your life on to, but with chronic disease there’s no escape. Whatever you do to try to improve things, you’re still going to have a chronic disease. At that time, I didn’t really know many other ill people, but nowadays I do, and I’m so glad that I do; knowing other people in a similar position, people who truly ‘get’ how you feel, is a wonderful thing. Not knowing any meant I had to come to that obvious epiphany all on my own. I know now that lots of people with chronic disease or disability take anti-depressants; we’re the anti-depressant gang.
As someone with an ‘invisible illness’, I have to take them so I don’t punch people in the face when they tell me how well I look. We all have our own pat answers to that statement; mine’s usually ‘Oh thanks, I’m really not though.’ The thing is, when you say, ‘It’s great to see you looking so well’, to an ill person, we (okay, I) sometimes hear ‘I don’t know what you’re complaining about, you’re clearly fine, you malingering fuckweasel.’ It depends whether you’re the first or the fourteenth person to say it that day. I know that’s really not what people are thinking, of course I do. Unless they work for Atos, that is.
Sometimes though, I really wish I didn’t look hale and hearty when I feel so ridiculously fatigued that buttering a piece of toast is asking a bit much. Looking fit and healthy when your bowel is suppurating and cramping and your bag is so full it’s threatening to burst and you’re going to have to buy a coffee in order to use a loo, can be a bit annoying. But most of the time I’m fine with it. If I look well, though, I’d quite like to be well. Matching insides and outsides would be good once in a while. If I wasn’t on the anti-depressants, those things could really get to me. I don’t suppose it’s completely down to them that they don’t, but they help.
I’ve been having a flare-up for a while. I was pretty sure it was gone a couple of weeks ago, and I got up and went out a bit. Met a couple of friends for coffees and lunches; ventured to Ikea with husband and son and rejoiced in the fact that we didn’t fight. Didn’t have so much as a cross word. And when we got home, I realised my gut was hurting. That it had been hurting all day and I’d been ignoring it; hoping it was just a twinge and would go away. But it didn’t, so it was back to bed for me. I did get up to go and see the GP who told me I had probably been over-confident; that I should have rested for longer; that this time, I was to go to bed and not get up until 48 hours after I feel better.
I’m still mostly in bed. It’s not as bad as it was, the flare-up, but it is pissing me off. I used to be brilliant at resting; at staying in bed. I did it for the best part of four years before I finally accepted that I needed an ileostomy and my baglady life began. Now I find it really hard. Now that I’ve had months at a time of relatively good health, I’ve become rubbish at staying in bed. I’ve become very good at thinking I’m about to be better; I’m brilliant at naively making arrangements, sure I’ll be able to keep them because I’m almost better, really I am.
Some days I find myself quite angry. I feel impotent, not in control of my own life, envious of other people’s good health – not my husband’s, or my son’s, but other people’s. Possibly yours. I see mothers outside my window shouting at their kids and I want to run out there and yell in their faces. Just sometimes. Because really I know that nobody appreciates good health until they lose it. And even then, if they’re lucky enough to get better, they only appreciate it for a while. I know because I’ve done it myself. When I first had life-saving surgery, and had yet to discover how much my Crohn’s would affect my life, I swore I’d cherish every second, enjoy every moment, fill every minute of every day with marvellousness. I must have tried to do that for about three weeks before losing that feeling; that need; that appreciation of just being alive. But lordy, there are days when I get so pissed off seeing perfectly healthy people wandering along looking grumpy. Of course, they could have an invisible illness themselves, but that doesn’t play into my scenario, so I always assume they don’t. And yes, I do know the word ‘hypocrisy’. I’m allowed a little leeway – I’ve got Crohn’s. *said in the plaintive whine of a particularly irritating 5 year old*
To be fair, my life is mostly good. Our lovely new bathroom is finally finished, we’ve got a sick-makingly cute new kitten who appears to be perfectly healthy. (You can read why that’s such a huge factor here), and my flare-up is surely coming to an end. Certainly it’s not as painful as it was at the beginning. I’m not taking any major pain killers, and not just because I only have morphine which makes me throw up if I take more than one dose in a 36 hour period. The fact is, it doesn’t hurt as much as it did.
I do have to keep cancelling things, but that’s my own fault. I shouldn’t arrange anything until I know for sure I’m well. It can get a bit tiring, or at least repetitive, having to explain to people that yes, I did have two massive surgeries and my intestines replumbed to help with the Crohn’s, but that’s all it was ever going to do – help. It wasn’t going to make it go away. It wasn’t going to cure me. The doctors and surgeons told me that, and I’m pretty sure I told my friends and family the same thing. But here’s the secret; the truth – I think I really thought it would. In the same way as I never believed I was going to die, I kind of did believe that although there were no promises being made, having a bag, and then going the whole hog and having my rectum removed and my Barbie butt created (bum sewn up – see posts passim), probably would make me better. Not cure me exactly, but make things so much better that I’d be just a person with a bag. Not a person with serious Crohn’s and a bag. I think I thought I’d have mild Crohn’s. It does happen; it’s happened to people I’ve met, and I was pretty sure it would happen to me. If I’m really honest, I still think it could – there’s a part of me that believes, once this flare-up has truly gone (my second since the last operation), I’ll be quite well. I always think things are going to be ok; I assume they’ll turn out perfectly fine, and I’m always taken aback when they don’t. Every time. It’s probably not a particularly intelligent way of existing, but it works for me. I’m mostly a glass half full kind of person; I like being that way. And when it does turn out the glass isn’t half full, but just has a nasty quarter centimetre of sediment on the bottom and is badly in need of being washed, well then I cope. I always cope. Partly that just seems to be who I am. And partly, I expect, it’s thanks to those little red pills I take every night.
Thursday, 8 November 2012
In a week where the world breathes a sigh of relief at the Americans making a better voting decision than we in the UK did last time round; where the cuts in our country are so bad that a disabled man went on a hunger strike outside his local DWP office; a week when a woman with Crohn’s disease, seemingly unfamiliar with the concept of remission, claims to have cured herself by eating tree bark (she has a secret recipe which she now wants to sell for millions to a pharmaceutical company)… In such a week, I feel I should be writing about something big. Something important. But there are people with more knowledge than I doing that. About all these things. So I’m going back to what I know best: my own story. Though I am quite cross about the tree cure thing…
This week, we are having our bathroom done. I say this week, we were also having it done last week and the week before. Workmen actually ripped out our entire bathroom, with a view to putting in a new one, three weeks ago. It was going to take a week. For the first few days, I was going to stay here and busk it – we have a tiny, unheated downstairs toilet – and then I was going to spend a week at my mother’s, coming home to a bright, shiny, perfectly functioning new bathroom. I should add that, all this time, I was having a horrible, painful, evil flare-up of my Crohn’s. I was on morphine which made me sick, then started eking out the few pethidine I had left from my last surgery, and which my GP has been told not to give me any more of. It’s a mess that I will only be in a position to sort out when the flare-up is long gone and I am well and strong enough for the fight. One of the ironies of chronic disease in today’s NHS. Maybe I should just go out and chew on a few branches.
A new bathroom is a lovely thing for anyone. For me, it was kind of a necessity. Our old bathroom worked – well, mostly. The toilet was old and tired and the flush took about 5 goes before anything significant would disappear into the waste pipe, and the tiles had swans on them. You know the kind of thing, white tile, white tile, white tile, swan. Then every so often, a series of tiles depicting a couple of swans on a lake. Horrible, hideous, chocolate boxy stuff, but not exactly dangerous. Just aesthetically unpleasing. Oh, and all the metal bits were faux gold. Faux gold taps on the sink and bath, a faux gold shower and attachments, faux gold hooks on the back of the door where we hung our towels. Nasty and tacky but again, not exactly functionally problematic. It wasn’t the prettiest of bathrooms – it was actually the ugliest one we’ve ever lived with – but it had been kitted out professionally enough and we’d lived with it for 11 years so we barely noticed it any more. Every now and again, the horror of the swans would upset one of us and we’d shout a bit, but then it would pass and we’d laugh and remember how much worse things could be. At least everything worked, if you don’t count the multiple toilet flushing thing.
And then I got my bag. And every two days I have to change my bag. It’s not horrible or upsetting or nasty or – usually – even particularly pooey, but it is a bit of a faff. And in that bathroom it was a lot of a faff. I hadn’t really thought about it much; it was just the way it was, and we weren’t in a position to do anything about it, then one day my mother was over and generally criticising. It’s ok, she’s my mother; it’s allowed. Sometimes criticism can lead to positive change, and this was one of those times. She was telling me how dusty it is in our bathroom, and asking how we cope with it (we live on a main road; it can’t be helped) and then she said, looking around the golden room of swans, ‘How do you change your bag in here?’ And out it came; a monologue of moaning about how difficult it was. How I had to perch the waste bags on the closed toilet seat, along with the dry wipes, how I put the fresh bags (always have more than one ready in case of error) on the side of the bath or, when it was on, the radiator (heating them up makes them stick more easily), how the sprays, powder and seals had to be laid out on the toilet cistern, and how, if my stoma decided to gush in the midst of a change, I had to sweep everything off the toilet seat sharpish so I could angle my stoma over the bowl and let it do its stuff. It was less than ideal. In fact, saying out loud how less than ideal it was made me feel a bit upset. A touch helpless. A few weeks after that, we found ourselves in a position to get a new bathroom.
Two days before they ripped the old bathroom out, I woke at 6am in a panic. I couldn’t stay in the house without a bathroom; what if I had a leak in the middle of the night? A bad one? It rarely happens these days, but it was bound to happen when I had no means of sorting it out. No shower. No heat. Just the tiny, freezing downstairs loo with half a sink in it. I had to go to my mother’s sooner. I had to go the day before the bathroom was no more. I would have to spend 10 days at my mother’s instead of a week.
Husband’s brother is a plumber who lives near Wales. He came to stay for a week, to do the plumbing. For free. Because he’s a good and lovely brother and knows we’re not exactly rolling in money. Unfortunately, the contractor who was doing everything else took to not turning up, and at the end of the week, brother in law had to go home with the bathroom barely started. He felt terrible. We felt angry. Each morning, waking in the warmth of my mother’s house, I’d tentatively ring home, nervous of what the answer to my ‘has anyone turned up?’ question would be. So many mornings, the answer was ‘no’. It seems, ‘I left my phone at a job/my girlfriend’s/the pub’ is the new one size fits all excuse. For 3 days, the contractor was ill. Then he went on holiday for a week. Then, when he got back last weekend, he told us his aunt came off her bike, which necessitated him not working for a couple of days. Perhaps he’s a part-time doctor. Who knows?
After two weeks, I came home from my mother’s. We’d got on fantastically well, but we’re a mother and an adult daughter; I didn’t want to push it. And, most importantly, the sink was plumbed in by then. So was the toilet, but it’s the sink that was everything to me. I chose the sink carefully; I didn’t care too much about everything else in the bathroom, but the sink … oh, the sink is the sink of my dreams. It’s wide. Really wide. The sink itself is normal sink size, but on either side there is space. Masses of space. It takes up almost an entire wall – it’s not a huge bathroom – but I had to have it. Because of all that space.
The night I got home was a bag change night. There was no radiator yet, and the hole where the extractor fan will go was open, leading directly to the cold outdoors. But the sink was in. My dream sink. And I was desperate to give it a try. I gathered all the necessary accoutrements, including the radio (I hate to do a bag change in silence) and entered what will, one day, maybe soon, be a fine bathroom. It was just me, a loo, an unplumbed bath, and my beautiful, working, huge sink.
On the left of the sink, I put the sprays, the seals and the powder, leaving space to stand over as I powdered and sprayed the stoma itself. The bags I put on the right, along with dry wipes and the waste bag, open and ready for discarded bags and used wipes, and I was done. Everything I needed was on either side of my beautiful new sink, just as I’d fantasised. The toilet was unencumbered, the bath was full of workmen tools, but that was it. I didn’t have to perch anything on the edge of anything else, because I had my dream sink. I apologise if this doesn’t mean anything to you; if I’m wanging on and on about this sink and you’re thinking that perhaps spending 2 weeks with my mother hasn’t left me unscathed at all, but mentally scarred in the weirdest of ways. If, however, you have ever had a bag, or have one now, or just know enough about it for whatever reason, then you’ll get it. You might even be a bit jealous; craving a dream sink of your own. I can tell you where to get one if you want, but you’re not having mine. I’m keeping mine forever.
As I write, the bathroom is still not finished. Every morning, husband gets out of bed stupidly early for a man who works at night, to be ready for the workmen to arrive at 8.30 as they always promise. And rarely do. We’re getting closer. The tiling is done, the bath is plumbed in, but not yet sealed, the shower is in over it, but not the screen door; plumbers – the plumber we have to pay for because our free, husband’s brother one had to leave when nothing else had happened – plumb, you see. They don’t put in doors, or seal joins. This one did put the radiator in though, so now the bathroom is unfinished but warm. And the toilet still works.
It’s annoying, and it’s irritating, and I have only had to live with it for a week, whereas husband and son have been coping with the aggravation and living in a house full of dusty tools and alien lumps of metal for 3 weeks now.
But it will be done, and it will be lovely, and in the meantime, I already have my sink. I have changed my bag at that sink four times now, each time more glorious than the last. And that flare-up? I think – whisper it – that it is almost gone. A bit of residual pain, but I have energy and I’ve been out during the day for hours at a time without having to pay for it in agony and tears. You know how I did that? It’s not a secret I need to sell to Big Pharma; it’s quite simple and often works on a flare-up if it’s not too serious – I rested. I was never tempted for even a second to try sucking on a tree.