For the first time, I sit in a crowed loud cafe, sipping Earl Grey tea and munching on vegan gluten free chocolate chip biscuits as I write this… I feel small, as though I don’t matter to anyone right in this moment. Everyone talking around me, volumes getting louder and louder as one group tries to speak over the other. All my sensors are heightened, so everything is in overload, especially my pain.
I’m in so much pain. My legs are aching, the muscles bruised from over working yesterday. It was a good day, and although I don’t think it was worth the pain, it’s made me realise that I need to speak up and be brave and opt for a wheelchair when necessary. I have one, so I need to use the darn thing to “preserve energy” and rest, and use when I know I’m likely to suffer more.
I’ve been suffering from the extreme fatigue, and now it’s the pain.
I have a busy day tomorrow, and whilst the past few days have been busy, tomorrow will be the day I really need my energy, of which I feel I am currently lacking!
I have a feeling that the pain and fatigue are going to send me into a right ol’ flare up if I don’t start slowing down!
These are the days I hate having fibromyalgia. My hypermobility causes my hips to go “out of joint”, my fibro adds to the pain, nerve shootings, bruised sensations, feelings of pulled muscles, even though you’ve done the same amount of walking the “average” person does. It’s days like this where I realise I’m not the average person, and that I do need to cut myself some slack now and again. The only trouble is, if you’re with a group of people, how do you fall back? You don’t want to slow down, you don’t want to show you’re incompetent. After all, years ago, I could run, jump, dance and walk without the pain, so why now?
I say years ago, but I forget that it was years since my fibro diagnosis, and even last year after a clinician doubted it, and I was referred again for another assessment, to be told that yes, it is correct. Well, I wish I could be referred back to the pain clinic then, because I seem to be forgetting how to pace myself.
I don’t like drugging myself up on painkillers. They’ve already caused problems with the digestive system, and as much as I can function a bit more with them, there’s are times where they don’t even touch the pain, or there are those times that I can’t function because I’m so drugged up.
With fibro, you’re living like you’re on a rollercoaster. You have your up days, your down days, and days which go round and round, where the pain fluctuates throughout the day.
I have a hell’a lot of the fibromyalgia symptoms, and one day I’ll write this down because I’d like you to know how frustrating this illness can be. It is an illness, a syndrome which is now classed as a disease in some countries, and it is a disability which takes over your life when you least expect it.
My pain was gradual from my teens, knowing something wasn’t quite right, and years of backwards and forwards for tests. A relief to have the diagnosis, but not so much when knowing there’s no cure, just learning to manage to live with it.
I’m forever learning my fibro boundaries. I push myself to the limit and more, until I’m at breaking point.
I struggle to walk and whilst using a crutch instead of my walking stick gives me extra support, I still feel as though my legs would give up at any moment.
I know I need to step back a bit (Please excuse the pun), and limit myself, pace myself, and give myself the right amount of rest time, it’s just learning to manage time, activities and all sorts, all of which I struggle with due to my mental health!
And that’s another story!