Awareness,  Fibromyalgia,  Ignorance,  Spoonies

Things you don’t see

I started this blog as a way to document life with Fibromyalgia and I get these weird ideas for posts at the most random of times.
Like this one for instance….
Two nights ago I woke up at 4am, on top of my duvet desperate for the loo but struggling to move and the thought popped into my head “People don’t see this struggle” (Which is obvious because my double bed is all mine every night!!!!)

There is two sides to me (and probably everyone else with blooming fibro)
— the side we show the world vs the side we hide from the world —

Even on the worst of days I am hiding the true extent of how I feel because I am anxious that because there is no evidence to show for my pain people won’t believe it. However I and everyone else I know with Fibro, and probably you reading this need to try and forget that because there is evidence – FIBROMYALGIA is the evidence. I want to grow confident to show the real struggle, because no-one should have to justify their actions because people don’t believe their DIAGNOSED medical condition. We need to stamp out the injustice…

Ok I might be jumping a bit ahead of myself there.

What people probably see-  the dressed, working, coping, moving, functioning me.
How I think people see me – 26, graduate, only working part-time, overweight, going no-where.

What people don’t see if when I sit in the bath for half an hour with no water left because I just don’t have the energy to get out. They don’t see the hours I spend tossing and turning in bed because my restless legs are keeping me awake. They don’t see the frustration at bending over to tie my shoe laces and feeling a shooting pain in my back. They don’t see how restless I am when I don’t know what to do with myself because if I lie down I hurt, if i sit up I hurt so sometimes I just get relief by lying on my bedroom floor. These are things you don’t see.

I don’t want people to see this side of me, dont think that is the case it really isn’t. I just want people to accept I have this side but I choose not to show it and if I show it then it means I am having a really bad day and could do with a break.

Fibromyalgia exists, I live with it… I am always living with it.

But the important thing is… I keep going.

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