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MM on ME

 

Mar 3, 2010

 

 


 

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Hi Gerwyn,

 

 
Quote Originally Posted by Gerwyn View Post
This is from the ME 25% group and resonates with my own history.Writers of guidelines and rehablitation programmes please take note

I need time and space to recover from this illness in a tranquil and restful environment. You can help me by pulling your weight and not adding to my stress-levels.

One of the most important facts that you can know about this illness is the amount of damage that can be done by pushing me beyond my capabilities. This is particularly vital at times when I'm very under-par - e.g. in the mornings, because I am so limited that the tiniest little thing can prove to be too much for me. Not responding to my needs, particularly that of total peace and rest when I'm tired, will make the condition worse, with recovery time spanning from hours to years. The complete loss of my mobility was caused by being pushed a little further than my limitations.

OH GOD DO I REMEMBER THAT

Right on, Gerwyn!

 

 

One of the most important facts that you can know about this illness is the amount of damage that can be done by pushing me beyond my capabilities. This is particularly vital at times when I'm very under-par - e.g. in the mornings, because I am so limited that the tiniest little thing can prove to be too much for me.

I absolutely refuse now since many years to make any appointments with anyone for any purpose in the mornings (which I can make binding via having my site ) .

And from 2002-2006 I woke up and then could not do anything for hours except lay in bed very stiff all over my body, hardly capable of movement and with pain, until that sort of thawed out. I called it 'ME rigor mortis', for myself (Du: "me lijkverstijving"). Very unpleasant. (L-carnitine seems to have a positive difference here: I am freed from that, at present and the last few years.)

Best wishes,

Maarten.

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