“It’s like trying to pull a rabbit out of a hat when you haven’t got a rabbit. Or a hat.”
Peta Evans
A diagnosis of Fibromyalgia has no benefits, as far as my experience goes. It will slap you in the face in whatever circumstance you find yourself in and yesterday, I am pretty sure steam was coming out of my ears in frustration. But hey, that was probably just a symptom of Fibromyalgia, right?!
So, for my 40th birthday, my amazing wife has booked us a lovely week away and I am so excited. She has already spoilt me terribly, taking me to a beautiful farm to hand feed alpacas, if you please, and now we get to go on holiday for the first time in years. We contacted our regular insurers to update them of new medical conditions, bearing in mind they have already been insuring me for Fibromyalgia and apparently now, no, Fibro and Chronic Fatigue are not acceptable on the policy. What exactly do they think is going to happen? I’m going to neckache to death?!
“Does it still count when no-one else sees? ‘Cause that’s the truth of it – you didn’t see.”
What You Say by Carly Bryant
But this sort of thing happens all the time, even medically. A few years ago, I had this crippling pain in my side. To be fair to them, they did a quick scan but when they couldn’t find anything they refused to investigate or help further, saying, “It’s because you’ve got Fibromyalgia. You’ll have to live with it.” And so, I do.
A couple of years ago, I started choking on food and drink. It was rushed through as suspected cancer from my GP, as he found a lump around my thyroid. I was so impressed with the care, although also quite frightened. They put a camera down my throat and ascertained that I had nodules on my thyroid. Okay, so what does that mean? Not much, they said, relatively harmless. Okay, but I’m still choking when I eat and drink. “It’s probably because you’ve got Fibromyalgia. You’ll have to live with it.” And so I do. I’ve always been a slow eater and now I am even slower, as I really have to concentrate on swallowing.
Honestly, I could hop into my GP surgery with my leg having fallen off and… well, first they would tell me to leave and phone back the following morning at 8am to book an appointment. But when I did eventually get an appointment, perhaps a week later, they would tell me that it was because I had Fibro and I just had to live with it.
“Please let me live.”
1 Kings 20:32
So, you would think with this condition being so incredibly debilitating – nodules on the thyroid that make people choke, excruciating pains in one’s side, impossible to insure, plus everything else that goes with it – that there would be treatment options, right? Well, if there are, I don’t know about any of it. I was diagnosed with M.E. and Fibromyalgia coming up to twenty years ago and I’ve never had any kind of help with it that I haven’t achieved myself. No pain relief. No support. Nothing. I’ve just had to fend for myself. How can it be so significant on the one hand and so untreatable on the other? I wish someone would make up their minds!
“Everyone says ‘don’t look down’ but I did look down, at where I’ve been, how far I’ve come, how high I’ve climbed. Where I thought I’d made a single trail in the snow, I’ve made a thousand, blighted by debris, the bits of me I’ve left behind.”
The Girls, by Lori Lansens, p.342
As for me, I have been working so hard on myself over the past few years and I am determined to be rid of these illnesses for good. They have held me back for too long. I don’t want to be defined by diagnoses. I want to be me. I want to be free.
“Let’s show and tell that we survive. We’re flying free like birds in the sky ‘cause we’re alive.”
Alive by Jessie J (Jessica Cornish, Claude Kelly and Rodney Jenkins)
Just Keep Swimming 