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The Real Face of CFS . . .

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OK, here are 4 photos.
I think I am being quite brave putting these on. Especially as photo 3 is awful !

Photo 1 : A Good Day

Photo 2 : An OK Day

Photo 3 : A Bad Day. In bed, exhausted, in lots of pain (head, eyes, neck, shoulders). Unable to function.

Photo 4 : The same Bad Day, but the pain starting to ease off. Maybe 5 hours later.

When people see me – I am maybe like photos 1 or 2.
But for most of the time, people don’t see me. And this is very typical of people with CFS or ME.
This year, I have probably looked like photo 3 for a huge amount of the time – maybe 75% of the time.
In bed, exhausted, in pain, not functioning in any way.
Just ill.
It has been one of the worst years I can remember in all my years with CFS.

But I think I’m starting to improve slightly now. Very very slowly – baby steps.
I’m almost scared to say this – incase its tempting fate. If that makes sense ?

I wanted to publish these photos – as Photo 3 is the “real face of CFS”.

OLYMPUS DIGITAL CAMERAOK DayBad Day Recovering

Reasons For Blog

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A few days ago I was reflecting on my reasons for starting this blog. I said the main reason was for myself – to de-stress. And this is true. I also said I wasn’t bothered if people read it or not – well this wasn’t totally true. I would like people to read it.

Because :

1) I am so anxious for people to know I am not lazy.
This is something I am sensitive about – but it is because of the treatment I have encountered over the years. Many years.

2) So people know what I do – re working with property.
I work for myself, by myself, at home – and sometimes feel a bit removed from the outside world. Doing it with CFS isn’t always easy. Its not that I’m craving attention – but nobody likes to feel they are hidden away with people having no idea what they do all day.

3) To help friends understand why it has often been difficult to have a proper social life.
I am not choosing not to see them. And I am trying to get things back on an even keel.

Other reasons :

4) To help get the word out about the awful treatment of CFS and ME. And to add my voice to the calls for recognition from : the government, health professionals, and the general public.
At the moment the situation is a national and world-wide scandal. People with very severe CFS and ME are actually dying – and it is ignored. Just hidden away.

5) To connect with others with CFS or ME.
Joining twitter opened my eyes to how many people were out there who wanted to talk and share experiences. And just to connect.

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