Thursday, 29 November 2012

Every Cloud

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.


  1. Usman Mehboob poke your bags where the sun don't shine!

    Glad Spike is enlivening the household!

  2. Oh, how familiar all this is! The underlying reason that patients like us - either as Crohnies or as depressed patients - are so misunderstood by other people is that their status quo is to be healthy. If they're not, then that's an ephemeral anomaly. They bounce back to their status quo and get on with life. They are incapable of comprehending what it's like for one's status quo to be miserable, where the feeling good part is the anomaly.

    Moreover, society has conditioned us to reject complaining. The funny part is, it's because of people like us that other people were originally admonished about their complaining. "There's always someone who has it worse," they say. And yes, there are plenty who have it worse than you or me, but relatively speaking we're the ones that the idiom references. We're the ones that healthy people are supposed to think about the next time they're annoyed their kids don't keep their rooms clean or that the neighbor slacks on mowing his lawn.

    I've suffered from chronic depression since long before I developed Crohn's, so I have a sort of unusual experience. I can't blame the depression on Crohn's, though certainly my experiences with Crohn's have armed the depression. I originally kept as much of it all to myself as I could. Eventually, though, I realized that short of scientific breakthroughs, the most important thing for any of us is for the general population to better understand us. That's something I could work on, simply by sharing my stories.

    I'm sure there are some who think I'm egocentric and just want me to shut up about Crohn's and depression, but I also know that I've personally affected how some people view patients like us - some of them, other patients themselves. That makes me feel useful, and I'm sure you know yourself how valuable that is.

  3. Wendy, I haven't experienced Crohn's but I have had cancer, and I can identify with the short-lived euphoria, wanting to do everything all at once because I'm better. Which may or may not be true - I still have four years' worth of annual checks before I can be told,officially, that I'm no more likely, statistically, ( bugger statistics) to get another cancer than anyone who's never had it. So I'm not actually "cured", they won't use that word for another 4 years - if then.
    So it's limbo-land for me, not ill, not "well", though I feel great and everyone tels me how well I look. I think it's a kind of relief/reassurance for them actually to see someone who had lung cancer, surgery and chemo and is still here to tell the tale.
    Any high spirits I may inadvertently display can largely be attributd to the SSRIs I've been taking for over 15 years. I tried to go cold turkey & nearly went barmy - I became a total bitch, a shrieking old bat. That'll teach me. Apparently it's the withdrawal that can turn you into a murderer. It has to be a managed withdrawal, a miiligramme at a time over months, apparently. At my age I don't think it's worth the hassle.
    During the cancer treatment some people tilted their heads and told me how brave I was. I longed to say it wasn't courage, I just didn't have a bloody choice if I wanted to stay alive. So Wendy I can empathise a bit. You just get on with it, don't you? That's life, as they say. And Spike is gorgeous.