It’s a few weeks since I got my fibromyalgia diagnosis and I’m struggling to adjust to being fibromyalgic. Is that’s even a thing? WordPress thinks not. It wants to correct it to ‘fibrillation’.
I’m struggling to adjust with the limitations. Of fibromyalgia, that is, not fibrillation.
I’m also struggling with guilt.
One problem is that people can’t see pain. They see the effects of my pain, which may come across as me being miserable. Or they might notice that I’m having a lot of sofa time. I don’t ‘look’ ill (not with make-up on, anyway) so I must be lazy?
Anyone who knows me in RL will no that this is not the case.
I know that having this condition isn’t my fault. I’ve always struggled with anxiety, therefore it was inevitable that one day there would be one trauma too many and the proverbial shit would hit the fan. I’m now wondering if the ‘nervous breakdown’ I had last year was in fact a severe fibromyagia flare up and the fear of what was wrong with me contributed to the severity of the symptoms? At the time, I told my GP that I felt something physical was driving the anxiety and not the other way around. It also explains why I couldn’t tolerate any medication because fibromyalgia can make you sensitive (or intolerant) to drugs, even simple painkillers.
The way I look at it is that I have three things to cope with: Pain, fatigue and guilt.
I get that it’s not my fault and yet, I feel guilty.
I feel guilty for having to rely on others.
I feel guilty about cancelling on people, not that I get out much.
I feel guilty about the stuff that gets postponed until I have a good day.
I feel guilty about being a miserable git because I’m in pain.
I feel guilty that I constantly complain about the pain from a condition that won’t kill me.
I worry that people won’t take my pain seriously.
This was one day last week.
I woke up after a good night’s insomnia. I scanned my body for pain levels. It was a 2. So I decided to go and grace the supermarket with my presence, instead of doing it online.
I sat in a well known coffee establishment and drank my decaf cappuccino (with coconut milk) feeling quite positive with life. Maybe, just maybe, today was going to be a good day?
At that point, the universe farted in my face.
My body protested the second I walked out into the humid car-park. It protested even further when I walked into the refrigerated section of the supermarket. This is because I can no longer handle sudden changes in temperature. My neck/ shoulder pain kicked in. However, the token was already in the trolley, so I pushed on – literally!
Pushing trollies these days feels like I am pushing a car, especially if I get one with a wonky wheel – which I inevitably do. Turning those corners with my dodgy neck and a set of four wheels that want to go the other way is an absolute joy. NOT.
Then, there’s the checkout experience..
On this occasion, I was in a supermarket where the checkout operators are trained to rapid-fire your goods at you at finger-breaking speed. You know the one where your fingers are in danger of being trapped between a can of sardines and a two-man tent? You see people limbering up as they queue, or power-lunging by the cat food. It’s more of a cardiovascular workout, than shopping. Also, there’s no help with packing here. If you’re slow (like me) you risk angering the fifty or so people behind you. However, it’s cheap, so you learn to ignore the glares and fists being slammed repeatedly into bags of frozen peas.
Heading back out of the chilly supermarket into the stifling heat of the car-park, I felt what little energy I had drain away from me. My battery went from 30% straight to PLUG ME THE HELL IN I’M ABOUT TO DIE!!!
I needed some energy, but I can’t ingest sugary things because my body is a bastard, so I had to make do with Linkin Park on full-volume.
What track did my my car ‘randomly’ chose to play?
I’ve Given Up.
The screamed lyrics, ‘Put me out of my fucking misery’ certainly raised a few eyebrows as I cruised past a well known bargain store (flogs 100 tea-lights for 99p) but I didn’t care because I needed the adrenaline blast to get myself home safely.
Anyhoo, by the time I got home and had taken my shopping bags inside the house – my muscles were basically on fire and it was all I could do NOT to slump onto the sofa there and then, but the ice-cream point-blank refused to put itself into the freezer – so I pushed on through the fatigue and pain.
Some days I wake up feeling crap. My pain levels are up or I have brain-fog and actual shopping is a no-no. Virtual shopping is a big enough ask on days like these. On other days I wake up feeling OK, but the pain kicks in when I’m out. Fibromyalgia’s be tricky that way. Hence, this particular situation.
Once I’d put my shopping away, I saw that my basket of washing needed pegging out and as soon as the ‘sod it’ thought entered my head, the ghost of my mother-in-law appeared (not really) saying, ‘It’s too good a day not to get that washing out, girl’ so I pushed on some more, promising myself faithfully that I would rest afterwards.
As soon as I stepped outside into my ‘sun-trap’ backyard, my head started to throb and my body ached as if I had the flu, but, still I refused to give in. Why? Because I’m an idiot!
I was only pegging some washing out. It wasn’t as if I was doing hardcore housework, but with each action of raising my arms, I felt as weak as a kitten – only less cute. I snapped a few pegs (that’ll teach me to buy cheap crap) and fought the urge to launch the peg-bag over the fence. Not that it would have gone very far. No strength, see?
My body was saying, ‘Oi. Oi. Oi. Moron. Step away from the classy rotary airier. YOU NEED TO REST!’, but my brain ignored it because it’s a stubborn tw@t and there was no way it was going to let a basket of washing defeat me! So, with a peg between my teeth, I soldiered on.
Having completed the task, I collapsed onto the sofa. I remained horizontal until I regained enough energy to prepare tea, which was three hours later. Alas, the migraine which had been threatening since the supermarket finally got the better of me and by 6pm I was in bed with ‘Coco’ and ‘Coolio’. That’s Co-codamol and Cool Strips, to you!
This was one day and by no means the worst. I just wanted to demonstrate how something menial, like shopping, can be such a pain in the arse – or whatever part of my anatomy my fibro happens to be manifesting itself in at the time.
The symptoms change, but pain and fatigue are constant.
The thing that bothers me the most is those hours when I am lying on the sofa. It bothers me that I can’t do what I want to do, when I want to do it. Or, sometimes, not at all. It drives the control freak in me up the wall! Then, because I feel guilty (and frustrated) I overdo things as soon as I regain some energy and find myself in this cycle of exhaustion, pain and guilt.
A little research shows me that the guilt trip isn’t uncommon with fibromyalgia sufferers, so I know that people will understand this post. I want them to tell me that the guilt doesn’t last forever. Or maybe that the guilt will push me when I need to be pushed because depression is getting the better of me? FWIW. I really don’t like crying. It makes me look like a psychotic panda. For this reason alone, I should have my tear-ducts removed.
I feel guilty for writing this post because there are people a lot worse off than myself. There is no termination point. I can walk. I can function, of sorts. This won’t kill me, but knowing I won’t die from this doesn’t lessen my pain. Or the exhaustion. Or even stop me whinging. It just makes me feel even more guilty than I already do.
To end this post, I will leave you with one of the oldest cliches in the book, but also one of the truest. Print it off. Stick it on your fridge, cupboard or forehead and absorb it’s message.
Appreciate your health: It’s a gift that’s not appreciated until it’s gone.
All images via Creative Commons