So, in August I go to be 'assessed for work.' I'll be very surprised if they say anything other than 'we think you can work in some way shape or form.'
I very rarely talk about being ill because it is; a) boring and b) reminds me how ill I am which I really prefer not to think about. But I thought I might blog about it just 'cos fer an all that, as we like to say in Yorkshire.
I have Crohns disease which means my insides are all messed up and I can't get the required amount of nutrients from my food. I was also mis-diagnosed at first which led to me dropping down to six stone (I'm six foot one tall) and spending most of my time curled up in a little ball of pain on the floor. The mis-diagnoses was understandable as I didn't and don't show any of the classic signs, the only thing tests were showing up was the platelets in my blood (the stuff which makes it clot) were millions* of parts per whatever instead on hundreds of thousands. Which led to these cheery words from my blood specialist – 'we don't know what's wrong with you but you could have a stroke at any moment.' Hurrah! Oh wait, actually, not hurrah.
Nice bedside manner mr Dr.
They wanted me to have leukaemia because that fitted with my symptoms but despite a few bone marrow biopsies** I stubbornly refused to have blood cancer. Eventually, my wife put her foot down and refused to leave the Dr's office until he did something^. He arranged an MRI. She then did the same trick at my GP's and he referred me to my specialist. She is brilliant.
Crohns is commonly thought to attack the gut but it can actually attack anywhere. Dr J said if it's bad (and mine is) it's like having flu every day of your life. You're tired, you ache etc. Plus all food makes you feel sick so you tend to forget or avoid food*^. This makes you more tired. Also, the drugs I'm on are really strong (and turn up in scary biohazard bags which I love) and they mess with your body too.
So, here's me. My concentration is good for about half an hour if it's something I have to think about like, oh, I don't know, writing. After that I stare blankly or constantly second guess myself because I can't quite trust myself. Or I just plain fade off into a half sleep. I can walk, but on a good day every step is like walking on a pebbly beach, bad day like walking on glass. The bones in my shins always feel like they're splintering and my ankles often like nails are being driven in~. Sometimes I drop things for no reason, my hands just decide not to hold them anymore. It's called peripheral nueropathy. I probably have rheumatoid arthritis too but the crohns drug mask that and their the same drugs you would take for arthritis, but stronger, anyway so it doesn't really matter.
And this is me when I don't do anything and can rest whenever I want. I know, from experience, the more I do the worse I get until I'm back into the curling up into a ball thing. Then it's steroids and being a moon faced freak for a bit and muscle wastage and general unpleasantness.
Despite this, I finished a novel. I write in the gaps where I feel all right. Sometimes it's early in the morning, sometimes during the night. I grab those bits and write until I have to stop. I try and take the boy to the park every day and for a walk because he enjoys it so much and I can lean on the pushchair.
Now, I would love to work. I love art and books and technology and can't afford half the stuff I would like. I'd also like to lavish stuff on Rook. thankfully Mrs RJ earns enough that we can get by but if I could work we'd be a lot more comfortable. But I'm realist enough to know that no one would employ me. Would you employ someone who'll at best spend the day staring into space and at worst fall asleep at their desk and is also going to be off ill constantly because the immuno-suppressants mean I get everything and I get it worse?*~
Probably not. So it will be interesting to see what the government thinks. And if they do think I can work, what exactly it is they think I can do.
Sorry if this is full of typos***. I'm a bit tired you see...
* I originally typoed this as miloins which sounds like something Lady Chatterley's lover would say.
**NEVER have one if you can avoid it. It is a new sort of pain. Actually, you probably don't need told to avoid it as it's like saying 'don't get cancer.' Redundant RJ is redandant.
^ We'd had months and months of turning up, waiting five hours while I tried not to weep with pain only to be told each time 'no idea what's going on, see you in a month.' My wife had even pointed out to the blood Dr she thought I had crohns.
*^ It's not all bad though. I am medically advised to eat lots of sweets and hot dogs. WIN!
~Another good thing. The painkillers, although they contribute directly to staring blankly into space.
*~ I don't want this to come across as moaning as it isn't. My life is wonderful. I have a fantastic wife, a brilliant little boy and great friends. All this stuff I list is normal to me and I have a resolutely (possibly sickeningly) positive attitude about everything. If you met me you probably wouldn't know I was ill though I may appear a bit spacey. Also, the NHS are brilliant, my Dr and the two specialist nurses I see are utterly fantastic and always ready to help. If I didn't have to see them for my illness I would want to be friends with them.
***The spelling, the grammar, the horror. This may well be the worst thing. I didn't edit this much to give you a flavour. *twitch*