I’m Not My Disease and My Disease is Not Me…But

August 17, 2012 § 3 Comments

There’s a lot of wisdom out there about how to cope with having a serious illness. Many people try to use positive thinking to cope with the situation. I do that myself, in many ways I’ve never been more positive. But in the end, what’s happened has happened and I cannot ignore the way this illness has changed my life. I can only hope that it won’t be a significant change over time and that, eventually, the drugs and dietary changes (more on that in another post) will work their magic and I’ll get some normality back.

I’m not my disease, but it has had a significant effect on me.

It took me about 6 months to get the diagnosis of dermatomyositis a rare autoimmune disease. It took another week to learn how to pronounce it.

I don’t know how true this is for everyone, but when I first found out what I had, I had an almost religious reaction to it. It was a little like that episode of The Simpsons where Mr Burns comes out of the woods wearing his hospital gown saying, “I bring you love, I come in peace”. I felt incredibly calm. I suppose it was the shock.

At the time I had to have a million tests for an underlying cause, as cancer is often the reason behind the disease. I was taken into hospital for 10 days and prodded and poked and scanned to within an inch of my life (the NHS is a wonderful thing). Thankfully it wasn’t cancer, probably never know the cause, they think Epstein Barr virus may be a cause: Oh, but apparently, cancer risk is increased with dermatomyositis (lets call it DM from now on) – joy of joys.

I think it was the whole surreal nature of the situation, suddenly being thrust into the depths of the National Health Service’s best endeavours. Not really understanding what is happening. It being a rare disease, not really being able to find out that much about it. Your mind doesn’t switch off so much as, goes on holiday.

I started having amazing dreams. In one I was standing in a very large glassed area, looking out over the most vivid and beautiful and massive vista, of enormous trees and beautiful plants and feeling a sense of overwhelming awe and wellbeing. I woke up thinking that I’d seen a vision of heaven. Sometimes the mind can be kind.

The ‘religious’ experience and sereneness has worn off now and I’m back to reality with a major BUMP!

I will tell you of my day-to-day experiences, with the disease, with the UK’s NHS system (both good and bad) and with how coping isn’t just about the physical side of things, it’s about the emotional and the practical – but then if you’re reading this you may already know that and we’d love you to join in the discourse.

We are not our diseases, but they are part of who we are and we need to recognise that to put them in their place.

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§ 3 Responses to I’m Not My Disease and My Disease is Not Me…But

  • Malcolm says:

    thank you for sharing. such a pervasive impact. horrible all round.

    Malcolm

  • jillinois says:

    I can definitely relate to the chronic, unheard of illness. It’s hard to explain. I’ve got dysautonomia (among other things) and nobody has heard of it other than a few assorted doctors. I’ll look forward to reading more. 🙂

    • susiemorrow says:

      Now that’s a mouthful! Did it take you ages to learn how to pronounce it too? Ive read your blog and following it too – you have some very powerful and moving posts

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