Your Jaw Never Gets Tired

It’s Jan 3rd 2014.

I have just finished watching the dvd of Voices From The Shadows.
Probably a year after many people have seen it – I know.
I had always meant to buy this, but 2013 was a very bad year and I managed to do very few things I wanted to.

A fellow sufferer had her husband deliver this it me to watch after I sent her a Xmas card. And had mentioned how bad I had been over the last year or two.
(I was very touched by her thinking to do this, as she is affected more severely than me.)

I had planned to get my husband to watch this with me, but then decided to watch it on my own first.
And I’m relieved I did as it was upsetting.

I thought I had become slightly hardened by now to all the tragic stories of people with severe CFS and severe ME. NB. I don’t mean that the way it sounds.
Its not thru lack of interest, or ignorance, or lack of experience.
Totally the opposite.

This last year 2013 has been the worst I have had in a long time with my CFS. If not THE worst.
Talking to fellow sufferers on twitter over the last 2 years, or just reading what they are saying, opened my eyes to a whole world of people suffering on a similar level to myself. In many cases, much worse than myself.
And I have read many peoples’ blogs too.

It has all helped me no end, but some of the stories and experiences have been awful.

So I guess I thought I would watch this dvd and find it very interesting, totally relevant and hugely worthwhile. But I wouldn’t get too emotional about it – because of all the stuff I have learned over the last few years. And gone thru myself.
Plus we all know the treatment of ME and CFS by the medical profession in general has been pretty rubbish – don’t we? (That’s addressed to fellow sufferers of course.)

But here I am at 2am – compelled to start typing this blogpost.

After I finished watching the film (approx 1 hour long) I just sat with my head in my hands on the sofa for a wee while.

Feeling emotionally drained and sad – but then fired up with anger.
(And anger was one of the reasons I started this Blog in the first place.)

For me, the worst bit in the whole film was listening to the voice of Sophia Mirza.

In the recording made when the people came to section her and remove her to a mental institution. Against her, and her mother’s, will.
(The people being her GP, a social worker and a psychiatrist. And policemen.)

Sophia was the 1st person in the UK to have Chronic Fatigue Syndrome recorded on her death certificate.
I had read about the tragic story of Sophia before and read thru the excellent website set up by her mother Criona, at : www.sophiaandme.org.uk.

I had already read about the awful mis-treatment of this young woman by all the medical professionals involved. And how she ended up dying at the young age of 32 when her ME deteriorated to such an extent her body could not recover.

On this website is a transcript of a full recording made on the day when she was unbelievably sectioned. On 11 July 2003.
And I had read it all, and it was awful.

But hearing her actual voice in the film was even worse. So painful to listen to.
It made the tragedy of her story all the more real. A tragedy that should have been preventable.
But instead the medical mis-treatment caused her ME to deteriorate to such an extent that she just couldn’t recover from it.

What a waste of a young life.

The tears eventually came, and lasted some time.
But then I would challenge anyone with this wretched condition not to shed tears, listening to the actual pleas of this young woman :
“I’m an ME patient, not a mental health patient” she keeps saying. And her heart-breaking pleas not to take her away, how it will make her worse.
And of course, it did make her worse. It killed her.

Sophia’s story is actually like something out of a horror film.

The film explained something for me I never understood before, ie. why her mother’s complaint to the General Medical Council (after her death) was not upheld .
The answer was so blindingly obvious that I almost smacked myself across the head :

The people at the GMC dealing with the complaint were psychiatrists . . .

You couldn’t make this up. How could this have been allowed ?

The explanation about psychiatrists on the GMC ruled on the complaint = the anger I am still feeling right now.

But this is just one part of the film and the people featured in it.
There is much more. All awful stories.

I don’t have enough energy to write any more just now. But my anger was so stirred up I had to write this post.
I think everyone with ME and CFS should buy this film and make at least one other person (a non-sufferer ) watch it.

To raise awareness.