Will I ever cease to be embarrassed at being ill? It's Christmas day and I am grateful for many things - family, friends, food, shelter - but I am also embarrassed, even ashamed (in a way that I don't fully understand) that yet another Christmas sees me confined to bed for most of the day. I still shudder to think that people might think it is just tiredness and I am baby-ing myself. If you could give these symptoms to a 'healthy' for just five minutes, they would understand immediately. It's an overwhelming feeling - like asthma of the cells, or being on the verge of collapse, or even some kind of blood poisoning. I'm sad that my family have to see me like this on a day when everyone wants to be joyful.
I've been reading more of the whole mind/body theories on Reverse therapy/ Mickle therapy and I confess, it is throwing me into great pockets of doubt and guilt. Of course I'd love to believe that a new mental scaffold of psychological or emotional adjustments could suddenly sustain my physical function and lead the way to better health. I long for this to be true - long, long, long!
Yet, my little 3 year old niece was ill this week with a kiddy-cold. Everyone sympathised and supported her, as it should be. When I looked at her limp and sniffling on the sofa, I didn't think, Hmm, is her inner child troubled? Has she got unresolved issues manifesting as sick-role behaviour? No, she was being the only host she could be for any micro pathogens hitching a ride.
If I think that about myself - ie. I am doing the best I can - then the RT/MT/mind-body improvement path self-combusts and I'm back at the cul-de-sac of square one. Square one is reality and today it's winning. Whatever or wherever square two is, I don't know. In my conflicted confusion, I've got to practise giving myself the acceptance that flowed so easily for my niece.
So, on this Christmas day, as every Christmas, I think of you PWME all over the country in all your hidden struggles. May hope and faith remain.
-C
2 comments:
Hang on in there, you're doing fine, and coping as best you can within your limitations. If it was as easy as thinking yourself better, then we'd have done it years ago.
These faith cures may help the worried well to get better, and I daresay some people with self-limiting illness that come under the ME/CFS umbrella may find it helps them to get over lost confidence and self esteem issues that may have been eroded by illness.
I've done a lot of reasearch recently over another hyped up miracle cure, and I cannot see how it could treat a physical/neurologically based illness, since it doesn't actually DO anything, other than teach the 'stop technique' whereby you are supposed to stop thinking about your symptoms and continue with your 'activity'. In other words, override your symptoms and push yourself. It's nothing more than a bit of motivational speaking and badly administered CBT, and comes packaged in new age/alternative therapy gift wrap. This is my opinion, yes, but I feel it is an informed and considered opinion.
You're doing the best you can, Ciara, and don't let anyone take away your strength and resolve.
Oh, you said that so well about christmas. Why is it we feel ashamed, and suffer the indignity of other people's sadness, or bafflement that, once again, we're ill at christmas? That's the tragedy of it. We should be feeling glad about the things we do have: family around when so many people are alone. Or simply being alive and not having a terminal illness. But instead we're dogged by other people's sense of the unacceptability of our condition. Thanks for sharing that.
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