My hidden 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 to 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 diverticulitis, Fibroids, 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 industries) & 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, happy life & am very mobile – 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 real me can be — & no one knows any different…
If I am invited out, Premiers, Launch parties etc – My friends may just get a “sorry I cant make it” at the last minute .…. But 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……..
BUT I am a fighter & this is my ultimate fight – Ive been Celeb FC “Teammum” for so long now, Fighting for other people. Something I really enjoy doing, Something I can do in my PJ’s on my laptop in bed. BUT now I want to research in to this horrible “Invisible illness” that robs people of their dignity, their energy, their life!
Because – I have found a whole online community of decent hardworking, loving people who have been robbed & who are very much misunderstood & maligned….
Im planning a HUGE event in 2017 to aid research into Fibromyalgia – its cause and whether it can be reversed.- I have my own theories…
I will keep you all posted…