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Saturday, 26 July 2014

Pause the silliness for a moment.....


I'm hijacking Foggy's page while he's in London 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 is no medicine for M.E. The best the medical profession offer is therapy. 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.

My own personal theory about M.E. is - Some human bodies simply can't cope with the speed and stress of modern life (dodgy gene maybe?). These people have had such stressful/overworked lives that their body gets burnt out and shuts down. In a way M.E. is telling me to slow down and take care of myself. When was the last time you spent an hour with NO stimulation. No TV, radio, book, computer game, music, conversation or simply doing something. When did you last just sit and be aware of your surroundings? White noise is great!  I have to force myself to take myself off somewhere quiet and recharge. My fish pond is my favourite place to just sit. Stimulation requires energy...energy I just don't have.

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

Sally x

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