Posts Tagged "fibromyalgia"
Fear
I am blogging this morning in a desperate attempt to stay awake.
Kai is busy doing things that Kai bear’s do: hiding things in various places to be retrieved later, pushing things round in his beloved new fire engine. He has a small plastic duck in his mouth and my cardigan wrapped around his neck. So normal day for him.
I, however, am not feeling quite so breezy. I keep falling asleep, my limbs feel like lead, I am dizzy and wobbly on my feet. And I am scared, very, very scared.
I don’t think this is low iron, or lack of sleep, or over-exertion. I think this is my FUCKING Fibromyalgia (and yes people with sensitive ears I WILL swear), and the thought of that taking a hold again makes my stomach lurch and my skin go cold in a way I can’t possibly make you understand. The doctor won’t see me till Friday but I know that’s what she’ll say. The pain levels are ok, but this overwhelming fatigue is how it starts. I have been here many, many times. Hopefully this will be a bad couple of weeks, maybe a month and then it will lift. But last time it was years. I thought I had beaten it, I really had.
I cannot go back to being ill again. I can’t. I am grabbing you by the virtual lapels right now and shaking you because you have to listen here. I cannot be that person again.
For six years I was a pale, floppy can’t-do shadow, managing to walk to the end of the road and back on a good day. I won’t tell you about the bad days. My life revolved around wheelchairs, and overwhelming pain that makes labour look like a walk in the park, pacing, and positive thinking and TAKING IT FUCKING EASY.
I don’t want to take it easy. I want to be alive and not a ghost person. I want to DO and get to be the person that I AM – full of energy and enthusiasm, and not some miserable, pathetic not-Josie.
And the real bitch is that everything was going so well. I was feeling happy and settled, I was FINALLY getting going with life and doing things that felt right and that were taking off. I wasn’t depressed or anxious or all the other things that no doubt my doctor and everyone else will assume is respsonsible for the relapse. I was doing great, I really, really was.
It.is.not.fair.
I don’t care if I sound petulant and whiney. I know it could be a lot worse. This illness won’t kill me but my god it kills my life. It kills my plans, my ambition, my potential. And it has done this over and over again my whole life.
I will not let it do it to me again.
I will not put my life on hold again.
You hear me?
Read MoreCrumbs on the keyboard and DON'T YOU TOUCH THAT!
Kai and I were supposed to be at ‘Krafty Kidz’ this morning (aliteration and creative spelling? You just know it was going to be all kinds of fun!) eating getting covered in paint and causing plenty of nice middle-class organised mayham. We are, however, not.
An old friend decided to pop round for a visit instead. But not a nice old friend who arrives with flowers and home-made biscuits. No. An old friend with teeth.
Yes folks, my very best friend the pain fairy has been to visit.
Kai has thankfully decided today is a two nap day (thus doubling my amount of sitting-on-ass time) so I do at least have some time to sit and put my feet up this morning and try and distract myself from the army of tiny microscopic beavers who seem to be gnawing at my joints, crapping in the resulting orifice and then lighting that crap on fire.
And because misery loves company, and because I know you’re all dying to get to know me better I thought I would sit and regale you with the story behind why there are a million tiny Yaks stampeeding all over my bones. And crapping on them. And lighting that crap on fire. See? I’m getting better with the metaphors! (And you just KNOW who that last one was for…)
I have Fibromyalgia.
Which is…well… actually they don’t actually know what it is too be honest. It’s kind of just a name for a collection of pretty horrible unexplained symptoms. Pain being the most obvious one. Delightfully agonising, unrelenting, ten billion woodpeckers all going to town on my deep muscle tissue pain (ok, I’ll stop with the metaphors now). And fatigue, lots of that. Plus the odd bit of incapacitating muscle stiffness, fog-like disruptions to my mental systems, and pins-and-needles alternating with completely numb limbs.
It’s quite a party I can tell you.
As I said we don’t really know why. The current theory is that it’s a neurological problem, with some schools of thought throwing in an auto-immune element or chemical imbalance. It’s probably a bit of a mixture of all three but the neurological explanation has always held the most water for me.
I reckon it’s a wiring problem. And the little man sitting at the control console in my brain likes to drink. And smoke dope. Plus I think he has a bit of a Kai-like tendency to find button pushing irresistible. It probably goes something like this…
Tiny Man: “Oh look there’s a lovely shiny button!”
Me: “Don’t you touch that”.
Tiny Man: “Understood. Nope. Definitely not touching. Umm…just out of interest, what does it do?”
Me: “That’s the button you’re supposed to press when I burn myself with the iron or trap my finger in the car door or push a giant watermelon sized baby out of my vagina. It’s the PAIN button tiny man and you must not push it unless you have a REALLY good reason”.
Tiny Man: “Right. Gotcha. No pressing of the button unless pain is justified. But… it’s just so shiny!”
Me:”Oi! I can see your finger on it!”
Tiny Man: “No no my finger’s just RESTING there, don’t worry. I won’t touch it honestly, I won’t…
PAIN PAIN PAIN PAIN PAIN
Me: “ARggghhH!HH!”
Tiny Man: “Ooops”
Me: “TURN IT OFF! TURN IT OFF GOD DAMN YOU!!!”
Tiny Man: “Umm… about that. I don’t seem to be able to. You see my mate popped over before with these DELICIOUS brownies and some beer and I may have inadvertently got some on this here brain console and now it won’t switch off. Sorry”.
Me: “ARggghhH!HH!”
Tiny Man: “Don’t worry! I’m sure it will right itself in a few hours, or days, or maybe weeks… it’s no big deal!”
Me: “BASTARD!!!”
I hate that tiny man.
Now I should point out, I’m pretty used to this by now. It’s been going on since I was very small, managing it has become second nature and I’m better now then I have EVER been (and actually have been since I became pregnant… hmm… hormonal element maybe? Partly the reason I’m so reluctant to give up breastfeeding yet! I reckon that glorious prolactin is the only thing keeping me going!). It’s not so bad these days, I’d even use the word ‘remission’. It just enjoys popping by ever so often to bite me on the ass when I’m not looking and remind me it’s still there.
It’s not always been so managable though. I spent most of my teens either on crutches or hobling round like a granny with a walking stick (did wonders for my high-school cool factor I can tell you), and most of my early twenties in a wheelchair, confined to bed or sofa for most of the day. To say it hasn’t been easy is an understatement. Not helped by the fact that a small proportion of the medical community still think it’s an entirely imaginary disease. Yep, that’s right, they think I’m a mad person who makes up the fact that I’m in pain to get attention. Isn’t that just what you want to hear when your 14 and think you might be dying because the pain is so bad? Alternatively they just thought I was just a HUGE drama queen who excessively exaggerated what are normal every-day aches and fatigue. Nice huh?
I can assure you that this is not the case. The pain is very real. I’m not an attention-seeking mad person. I am not over-reacting or a big wuss. The fact that I managed to give birth on two paracetamol and wiff of gas and air I hope proves that, as does the fact that I managed to keep smiling through the many tests and painful procedures they subjected me to as a child to prove whether or not I was making it all up.
But it is, I’ll admit, a bit of a mystery.
In any case, it doesn’t matter. I don’t really care who believes me anymore. I’ve got a handle on it and get to live a relatively normal life so I feel lucky. Other people with the same illness don’t do quite so well.
It’s been a tough journey but my goodness am I stronger for it. And that has to be a good thing.
Anyway, I hear the sounds of a little man stirring (no, not THAT little man – the nice one that will greet me with cuddles and kisses).
Catch you laters.
