12th May – International Fibromyalgia Awareness Day

To be perfectly frank, this day passes by most years without a fanfare. This is mainly because unless YOU are affected by this awful illness “YOU JUST DON’T GET IT”!

Fibro is a horrific combination of widespread pain, aching & sore muscles, fatigue, sleep deprivation, tender points all over your body, Stomach upsets, memory loss, numbness in the fingers & feet & oh so much more…

BUT its often seen (by those who don’t “get it”) as none of the above, just as someone “shirking” or “playing up” as it shows no outward signs…

You look the same (maybe a bit tired in the face & a bit chunkier round the gut (thanks various medications & painkillers) BUT essentially – The same..

Also – one of the worst things about this thief (it steals your previous self from you, almost overnight) is that there is no definitive biological marker or test so you can go years & years with the symptoms & be misdiagnosed, disbelieved or worse – ignored.

Anyhow – to anyone out there affected by this monster – I send gentle hugs & I REALLY UNDERSTAND XXX

So – let me just re-iterate how many of us, behind closed doors feel.

Its not “in my head” the pain is real

So here’s a few words about how I feel

“Me” has been lost & “I” has faded

My “happy “My “fun” have all degraded

The “go-to” person who sorted out issues

Now cannot survive without tablets and tissues

 

I’m a shell, a shadow, a rambling ghost

But do you know what hurts this ghost the most?

The “looks” it gets as it moans from pains

Undisguised disbelief even though it explains.

Even worse, on days when the ghost has gone

When “I” feel like maybe, Life can go on

 

I know its fleeting when “Real Me” is back

As its anyone’s guess, till I am under attack

From this thing, this word, this condition from hell

That’s ripped up my life & consumed me as well

The friends I once laughed with, have all  disappeared

I don’t blame them , I’m boring , not me, just Weird!

My new life is now one of pain medication

Of ghosting, of fading, of complete isolation

 

Thank George for Make-UP & Snap-Chat Filters & DOGGED determination that this spoonie is gonna live hard on “good days” (by good days I mean days I can hide the pain under multiple painkillers, Makeup & Smiles) & know that if I crash – the 3-4 day ride was worth the 1-2 weeks in bed.

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