I am one of millions of crafters who live with a debilitating chronic pain illness.
Mine is fibromyalgia.
I posted on a craft page a few days ago, asking how people managed
with things like the big shot,
and other craft techniques, when dexterity and chronic pain can be
brought on by such things.
There were over 190 comments all from people,
saying how they had also got things like
Fibromyalgia, and ME, MS etc.
Many of them commented that in a nice-yet upsetting-way,
they were glad they weren't the only ones coping with such things.
They shared their views on the kind of crafts that they liked, the kind they'd
had to give up, and spoke of how isolated they felt, and misunderstood.
For those of you that haven't heard of Fibromyalgia, it's a debilitating condition,
that causes widespread pain throughout the body.
The pain can be severe, sharp stabbing, burning or shooting,
and often occurs in more than one place in the body at any one time.
Other symptoms can include, terrible memory and cognitive problems,
tinitus and sleep deprivation,
It can also cause extreme sensitivity to light, sounds, smells and even touch.
The slightest touch can cause pain.
It causes stiffness, like 'makes you feel like a 90 year old' stiffness.
Fatigue can come on at the drop of a hat, and be swift and relentlessness.
Headaches, Irritable Bowl and dizziness often occurs as well as anxiety, and are all things to 'not' look forward to.
It can also cause server depression.
This is because we have to suffer, not just from pain, but from other people's opinions on or
illnesses.
They see us with no physical evidence of what's wrong with us, so they judge...and tell us ridiclous
things like 'Well you look fine' and 'maybe if you just got a decent night's sleep'.
The thing is, that's not even a possibility.
There are three levels of sleep, the last being, full, deep sleep.
The one our bodies need to regenerate and heal.
And unfortunately, it's a stage of sleep that those of us with Fibro can't achieve.
We are told that the pain is all in our heads, that it's not a real illness and other things
that can bring us down.
Being met with such things causes a lot of sufferers to keep quite and suffer alone.
They become isolated and that's when the depression can set in worse.
I am incredibly lucky to be surrounded by people that do actually get it,
and give the support needed.
I'm also part of a local support group in my home town for Fibro,
and we meet up on a regular basis
to try and help people in our area, so other sufferers know they are not alone.
Anyway, back to the top...
The post I put on the craft group got pulled, because Admin felt it had gotten of topic of craft
(even though it didn't).
This upset me a little, as all those people that had been
suffering alone, had seemed hopeful for once.
As a result of my post,
I received a few friends requests. But I was disappointed that so
many others were obviously
suffering in silence and needed a place to convene.
So I decided to set up my own Group.
A craft group for those with fibro and other illnesses, where
they don't have to feel alone but can still share their crafts and ideas.
So here it is, for if any of you out there that are suffering, and just want a place to hang out,
share ideas and be able to talk, form friendships and just be able to feel human,
without judgement.
That's the link above, should any of you that suffer, want to pop over and join
XOXO
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