Life as a Spoonie

The problem is with Fibromyalgia is it looks & feels like so many other things, its symptoms are the same as so many other conditions.

Doctors don’t know what to do with it (& by default you) – Consultants range from “Crikey you are unlucky to have all this happening” to – “Ahh yes, its a flare & you won’t be able o walk for about 8 weeks, but chin up, its just a flare”…

It took 4 years to diagnose me, after being pushed from pillar to post, getting progressively iller (Is that even a word) & more & more frustrated….

I know I’m angry, Although according to my GP – Im “Depressed”.

No shit Sherlock – I have heart problems, Back problems, Hypertension, Shortness of breath, Night time fits, night sweats , Cant sleep, Fingers hurt (Im doing this using speech recognition software I bought myself), It hurts everywhere when I walk, I am sick of being sick (literally), I have diverticulitisFibroids, Lumps & bumps here there & everywhere, Cysts on my Ovaries, Fought & won Thyroid cancer, dents in my scull (Thanks to Calcium deficiency) , malabsorbtion issues, Pain, weakness – Oh BLAH BLAH BLAH…..

TBH, I think depression would be a very valid response! 4 years ago I was very high up in a very BIG business. I’ve always held managerial roles (mainly in male dominated industry) & this has turned me into a shuffling ghost. I say ghost because – I don’t get seen…… Not really, the real me has faded away!

Online, It looks like I have a healthy social life & am very mobile & happy – You see, online you can maintain a facade – I love that – At least I haven’t completely disappeared… I feel like daily my real self is fading away – BUT I am so thankful for Social media – Where the person behind  “IamSpoonie” – The Real me can be — well ME & no one knows any different… They may just get a “sorry I cant make it” at the last minute when an event is on etc…. Whats unusual about that?

So. Here I am – Spoonie – Fighting against this poxy diagnosis & the dismissive medical profession & now finding a whole online swath of fellow “ghosts” who like me have faded away…..

Doctors fob people off because they don’t know a lot about it.

Family ignore it, because it cant be seen.

Friends don’t know about it, because you just fade from your social circles.

Your spoons get less & less daily……..

I am Spoonie – You can come along with me on my contradictory journey if you like, where  my ghost fades away but my online self flourishes………….

Until …………………………Well who knows….

 

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3 thoughts on “Life as a Spoonie

  1. Pingback: What a Monday Morning! | lifeasaspoonie

  2. I’m so sorry you’re on the fibro train as well as everything else you have going on. I was diagnosed with fibro and CFS/ME late last year after an 18 month process. I’m fighting hard to retain my identity and my life … rather than become the illness. I’ve given up work and my husband is super supportive. I still run a household with 6 kids so it’s not like I have nothing to do. But some days nothing is all I do. I’m writing a post now about my perspective on fibro. Huge to you (gentle ones).

    Liked by 1 person

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