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Saturday, 26 July 2014

M.E/C.F.S. - Misunderstood

I want to remind you of the reason I have created this fun, upbeat, globetrotting campaign.

M.E. is a massively misunderstood, under-researched, increasingly common debilitating illness. I'm 'lucky' in that I 'only' have mild M.E. Fortunately, this means I am still able to work full time though with difficulty some days. 

My symptoms are:

Extreme tiredness
Muscle fatigue
Inability to control my temperature (extreme hot/extreme cold)
Brain fog
Memory issues
Inability to concentrate for more than 20 minutes at a time
Unrefreshing sleep/insomnia/erratic sleep 
Sensitivity to light (sunlight and indoor lighting)
Delicate immune system - swollen glands when I am run down
Flu-like symptoms
'dead legs'
Occasionally unable to feel arms and legs (when I am particularly wiped out)
Depression - probably because I am too tired or ill to do as many things as I would like.

There are probably a few more but .... I can't remember!

As all M.E. sufferers know, when I say extreme tiredness I don't mean slightly sleepy. Think of the most tired you have ever been in your whole life, times that by 2 and experience that 4 times a week....that's what I mean by extreme tiredness. I can feel this tired at any time of the day, not just at bed time or after a hard day. I reach the point where I can't function.

When I am feeling good I, stupidly, push myself and make the most of the extra energy I have. Feels great at the time - makes you feel alive! BUT....2 days later I am numb and wiped out...my battery is flat.

There are no medicines for M.E. or any effective treatments. I have had Cognitive Behavioural Therapy (CBT) and Pacing Therapy; didn't really work for me. I'll talk about that more in a future blog.

To my M.E. suffering followers - I hope today is a good day for YOU.

Sally x


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