Calling CFS/ME people

Hi You Lovely People,

I would like your help.  I feel I am 80% well from CFS/ME but only because I avoid foods and chemicals that upset me, take supplements and pace myself.  This has helped me get back to working 16+ hours a week.

If I was to live normally . . . I wouldn’t be able to.

What has prompted this today is a visit to my GP and her inability to help me.  I felt lost and alone.

There are many organisations to help CFS/ME people but I would like to chat with those who have got themselves to a place of wellness their way, who feel they are 80% well but are coping on their own and so feel isolated at times.

On the whole I am very well.  But on occasions I am ill.  I don’t know what has made me ill, it may be a food, a chemical or doing too much.

In the past I have generally been able to trace the culprit and so avoid it.  Now it defies my analysis.

If I speak to my GP I am told you have a chronic illness like many others have diabetes and they cope.

She didn’t actually say: So cope.  But I felt the inference was there.

I feel that being very nearly quite well is almost worse.  It is like being at the apex of a mountain where the incline is steepest and most tricky and difficult.

I told my GP that the symptoms are quite scary.  She said: O there is nothing to be scared about, you have had all the tests and you are fine.

My problem at the moment is finding a shampoo that doesn’t make my head feel as though it is in a vice.  And buying foods that I can eat.  I am not very good at making decisions and actually purchasing things I can eat, and that makes me miserable.

And when I get miserable – O boy!  I have to give myself a stern talking to!

So if there is anyone like me, getting on with it, feeling generally OK and then having the odd downward spiral, please write and perhaps we can set up a sensible helpful dialogue, a CFS/ME Pal lifeline.

It is good to talk.

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