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What would I do to get better from ME? March 10, 2012

Filed under: Disability,Life,ME — Claire @ 11:42 pm
Tags: , , , , , , ,

The events of the past day has brought up an inner debate. When I was first diagnosed with ME I was told that I was lucky, because I was seeing the same pediatrician who saw my brother for his diabetes. The doctor told me that I would get better; but that Simon would always have diabetes. Many times over the years I’ve flashed back to that comment and thought how wrong the man was. I lost everything, my education, my friends, the ability to walk, talk, eat, sleep, go out, have a life. I’d take the diabetes every single time, even after everything that Simon’s been through with his bad hypo this weekend. Even Simon has said he’d rather be diabetic than have ME.

It’s made me think what I would be willing to do to get better. If I could do four injections a day, like Simon, and then be able to get on with an almost normal life I’d take it. Pop twenty pills an hour, every hour – yes I’d do that. Have an operation, sure sign me up.

Simon is meant to test his blood sugar levels daily – I thought it would be so cool to have a test like that for energy levels. A drop of blood and it could tell you how well you’re doing, if you need to rest more or you have enough energy to go out, work for another hour, stay up later. It would make life so much easier without the hit and miss of trying to work out how you’re feeling and what you can and can’t do.

I’ve also been thinking about what I wouldn’t do, I wouldn’t have an operation that had a high chance of dying or being made much worse, because at least I do have a life and I can do some things, with the hope of getting better.

I guess I would be willing to do something if it meant that my life would be shortened; but only by ten years, no more, if it meant I would be guaranteed complete health and I could fill the time I do have with everything I want to do. I’d rather a shorter full and happy life than have years and years of watching everybody else do the things that I want to. I guess I would even be willing to give up the chance to have children. I really want to have children of my own, I always have; but right now I’m not well enough to even consider having kids, it wouldn’t be fair on them, so I wouldn’t really be in a worse place than I am now.

I think one of the hardest parts of this illness is the hope that you might get better. I know that sounds insane and if I had an illness that was just going to get worse then I’d probably find it just as hard, if not harder; but it feels like there’s always this golden carrot being dangled ahead, this hope of recovery. The problem is it doesn’t happen for everyone and there’s no way to know if you’ll be one of the lucky ones. There’s no rhyme or reason to any of it. I think some of the worst pain you get with an illness, any illness, is the hurt of wanting life to be different, aching for the things you can’t have; but I’d rather come to terms with it and accept that this is where I am and will always be. Then I could make the best of it. I do try to do that anyway; but I know that in my head I’m still waiting to magically get better, so that all the big dreams, getting married, having children can all happen.

I know that healthy people don’t always achieve those dreams and that there are ill people who do get them; but for me they have always been tied to being well. I can’t really imagine finding a relationship that would work with my health at the moment, I’ve never thought it would be fair to force this life on someone who had other choices. I have been re-thinking that view recently; but I still can’t believe somebody would willingly accept this. I know that there are lots of amazing people who have, many of my friends are very happily married to amazing men and I’m not just a little jealous of them. I’ve just never met anyone who’s right for me. I hadn’t really been trying to meet anyone if I’m honest, I kind of thought I’d be better by now and it wouldn’t be an issue; but I am, so it’s left me wondering where I stand (or sit) with everything.

I’m torn between embracing my current life completely, accepting that I’m perfect as I am and working hard to aim for the life I want. How is it possible to balance the two? To accept the present and still hope for the future? I really don’t know. I’m not depressed or feeling self-pity, I’m just trying to work out how to be: to be present, to be happy, to be me.


4 Responses to “What would I do to get better from ME?”

  1. aawwa Says:

    That is a tough one Claire. In my life experience I sometimes found change only happens when I completely let go of my expectations – sort of give up! That’s not a comfortable place to be but sometimes we need to hit bottom before things change.


    • Claire Says:

      Thanks Lorraine. That is how I’ve been with Holidays From Home; but never had the courage to do that with my health. I think it may be time. Thanks.x

  2. There’s no chronic illness on earth I wouldn’t rather have than long-term severe ME, unless there’s another one that, as well as being terribly painful and tormenting in other ways, totally deprived someone of any way of enjoying their life. The other day I watched a documentary from 2004 called The Boy Whose Skin Fell Off, about a man (he was 36 by the time this was made, despite the title) with a skin disease (epidermolysis bullosa or EB) that caused the skin to come away and blister at the slightest knock. This is obviously painful in itself, and the sufferer has to wear dressings and bandages which have to be changed regularly, which is also very painful (and you can imagine how distressing it is for a parent to have to do this to their child regularly).

    However, in his last four months alone, he flew in a glider, had a house-warming party and travelled from his home in Northumberland to 10 Downing Street to meet the then PM’s wife (Cherie Blair) and attended other functions for DEBRA (the charity that serves people with that particular illness). People with EB have social lives, some of them drive, they go to school and college and sometimes they have jobs. There is one who was in a documentary last year about someone with EB who went storm-chasing across the American mid-west. People with severe ME get to do none of this (it was someone with severe ME who told me about the storm-chasing programme, actually, and I don’t think she’s been in a car in years).

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