Today I was officially diagnosed with Fibromyalgia. I had a feeling this day would come. I had an inkling years ago when I stumbled across it ‘googling’ one of the ridiculous amounts of symptoms I have, but I dismissed it thinking I was becoming a hypochondriac and I needed to lay off the internet. I have since stumbled across it, during many of the phases that I have gone through, with whatever seems to have happened to my body, but I never once brought it up with a doctor. Stubbornly, somewhere inside of me, part of me wanted to make sure the doctors made their own diagnosis, without me putting the idea in their heads. Maybe another part of me was a bit scared too. The idea I could have an illness that wouldn’t go away is kind of terrifying. I know the title is ‘curing’ but there’s an element of positive thinking there.
None the less, after years of dragging myself around to doctors and specialists, for headaches, sinus, eye problems, allergies, Arthritis, hormone issues, pain, IBS (ok, can ramble here but I’m even beginning to annoy myself), I finally bit the bullet and went to a doctor that specialises in chronic disease management because I knew, whatever my problem was, I’ve had it for years and I’ve had enough.
Blood tests, elimination diet, more blood tests, x-rays of my joints, more blood tests, an endoscopy and finally colonoscopy and finally we have arrived here – Fibromyalgia.
I read about the symptoms at this website http://www.fibromyalgia-symptoms.org/ yesterday, after knowing my colonoscopy report was clear (this only left Fibro), and I just wept. Reading some of the articles and some of the symptoms gave me this awful sense of dread and a liberating sense of relief all at once. Some of the things I go through I would never go to a doctor about. Just because on their own, they don’t make sense. Like the ‘brain fog’. I am a capable, well functioning intelligent woman and some days I feel like it takes every fibre of my being to construct a simple sentence. Ask me where my keys are or what I had for breakfast and I stare like a mindless goldfish. It can be embarrassing.
It can be debilitating. I can eat the wrong thing and end up in bed for four hours. I run out of energy almost every day, and even on a good day I can wear out really easily. Long car trips? I have to stop 4 times when I go to visit my family and it’s only a 2 and a bit hour drive. But I can’t function.
My partner and I went Christmas shopping and mid-shopping spree I broke down and bawled my eyes out. I’m not even depressed, but the combination of hormones, over sensitivity to light, crowds, pain and exhaustion just brought me completely undone. He stares at me completely helpless and I feel even worse for putting him through this (like I have some control over it).
On the bright side, this now has a name. This stuff that has been rendering me useless, has a name. The downside is, that there’s no ‘cure’. There are lots of thing that you can try, but the overwhelming response of most people is that there’s not much you can do. I refuse to believe that. I refuse to think that this stupid syndrome will get the better of me. You see, I am a fighter. I’ve gone through so much in my life, overcome so many other ‘issues’, that I just know, without a doubt, that I will find a way to overcome this too. I don’t care if I have to drink the tea of goat’s testicles or sit in mud puddles laced with eye of newt – whatever it takes, I will do it. I already know that white bread is just dangerous for me – it almost instantly brings me undone. So what else does it? I will find out. I will also find out what strengthens me and builds my immune system and gives me energy. I will do the research and I will do what it takes to get better and I will. Because that’s just what I do.
First step according to the doctor is to try Endep. A low dose of anti-depressants that they don’t actually use for anti-depressants anymore (apparently). It changes the way the brain responds to pain and helps you sleep – the idea being that it will help me be less exhausted and help me to not be in pain all the time (and then further be less exhausted). Well, wish me luck. I’ve had my first dose, and I’m hoping for some relief. I made her promise me it wouldn’t affect my brain. I still remember being a teenager with depression and being put on medication that made me so dopey I couldn’t function. I already feel like it’s hard to function and I really value my brain. So much so that I’d rather the pain than take something that could make me more fuzzy. So the dose is extremely low – she said at that dose it wouldn’t even treat depression, but it could still help with the Fibromyalgia and the side affect shouldn’t be bad because of the dose size. **UPDATE** Endep sucked for me.
I’ve decided to blog this journey for a few reasons. One; writing helps me process stuff. Always has, probably always will. Two; it gets some of the struggles off my chest and maybe I will feel a bit better for it. Three; it will force me to notice if there’s progress. But Four (and this one is probably the most important); if I do end up finding things that work I would really like to make it easier on those who are being diagnosed after me. It’s a massive deal and if I can make it easier for anyone else then I feel obligated to do that. I hope that me sharing all this will help someone feel a little less alone and like there’s someone out there that understands, and there’s some hope in that. I don’t care for pity. I don’t feel sorry for myself. There are little twinges where I have some self pity but I refuse to give into it because it won’t make me better, and I don’t want to be miserable. I want to be well functioning, peaceful and happy, and I’ll do what it takes to get there, which always means accepting things. What happens happens, what is; is. I don’t ask why me, I ask – what do I need to learn from this? That attitude has kept me alive more than once and it’s the one thing I hope people really ‘get’ from what I do. If you need to comment on someone's struggle with something, never say, "Poor you it must be hard". Say, "Wow, look at you go – you are inspiring". One dis-empowers, the other builds and encourages.
I know there are things I will need to learn, like how to balance and how to rest when I need to. I have struggled with that for years. It just makes more sense why now. There’s a reason for it. One I don’t quite understand, but I will. Just like every other thing I have gone through, I will dig deeper, I will lean on a God that I don’t quite understand and one foot in front of the other I will get there. Because, that’s how I roll.
Bless your cotton socks off.
Michelle Cashman Singer/songwriter, speaker and podcaster. Founder of The Deciduous Tree Project and host of the weekly 'Transformational Personal Growth' podcast.