When
I was finally diagnosed with Fibromyalgia a few months ago, I did the
same thing I did when I was diagnosed with PTSD – I joined some
support groups on Facebook.
It
was the natural thing to do, joining groups for those who suffer from
PTSD was eye opening and being able to talk with others allowed me to
accept and understand my condition.
I
wish I found Fibro groups as encouraging. I have found myself
un-joining many groups simply because of the negativity was making me
ill.
Granted
it is always good to be reminded that you are not alone, other people
know exactly how you feel when your body randomly spasms as you try
to get to sleep; that we sometimes hurt in places we didn't even
think possible and that sometimes we wonder why we go on living. I
confess, only hearing the bad things makes it hard to stay positive
but how can we be picked up if we don't let others know we have
fallen down?
What
sucks is what I call scaremongering. Not that the members are doing
it, but there are so many articles online that claim to know what
causes Fibromyalgia or how the illness progresses.
The
worst thing about Fibromyalgia is not having answers as to why. We
know Cancer is caused by cells dividing in a uncontrolled way. We
know how to treat it with a number of medical options.
With
Fibro the answer is not so simple. With no one known cause, many
symptoms that can vary from person to person and professionals
arguing whether it is an autoimmune disease or a central nervous
system disorder – when they believe it exists at all – it is
natural to trawl the internet for answers when all you can do is take
medication for the pain and try to pace yourself through the day.
I
went through the phase (as many of us do) of reading everything I
could find on the subject. I scared myself. I thought my life was
over. I had been under the impression that if I lost weight, all my
problems would go away. Finally I accepted that there was no answer
and just focused on living with guidance from my mum (who also has
Fibro) and my doctor.
The
problem with joining the groups was that people are always sharing
articles in the search for answers. I couldn't help but read them.
The last straw was when a site was shared that claimed Fibro was
terminal. We know it isn't. It made me realise that the old devil had
been creeping back in (confirmed by my mum) - I was letting the
unknown scare me.
I
wasn't even trying to pace myself. I didn't even move beyond my bed,
armchair and the loo in case I caused my condition to become worse. I
don't simply mean a flare up. I mean causing me to be bedridden.
Thank
heaven for The Mighty and the brave souls, my mum and my doctor who
reminded me that my life is mine to make it.
Now
I ignore any posts that claim to have the answers, I have left some
groups and allow those that I remind me that my situation could
always be worse.
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