My life is a perpetuating cycle of pain, on a daily basis. It’s something I don’t think I’ll ever be able to adjust to, because no two days are ever the same.
I exist with chronic pain, daily – and it means I’m short on energy, as my body constantly tries to combat the pain signals running through my body – its always at work and I’m always left in a state of fight or flight meaning the little energy I have is constantly being used up.
Explaining life can be difficult, how do you possibly get someone to comprehend that there’s no one moment in any day where you’re pain free – and just what it feels like to live in such a manner. I’m unable to explain the heights of my pains, because my perception and tolerance of pain are both considerably higher than the average (healthy) adult; they simply have to be in order for me to survive. My view of something that might be on a 4 on my pain scale – could be a ten on someone who is healthy’s pain scale or a 2 on someone else’s, who has lived in chronic pain much longer than I.
Basically I know I can cope with more pain now than I did a year ago, as I’ve had a year of living like this and have adapted to the pain (not become used to it entirely, but I know fully what I can and cannot deal with).
My life with chronic illnesses is very different to my life pre-diagnosis, and although I’ve tried to take a back step away from a lot of the things that used to take my energy, there are times now, where I cannot do even the simplest of things … because there’s no energy left in me.
The past week has been a scary one. Perhaps I’d become too accustomed to how my body could cope with constant pain, that I’d ignored all of the warning signs that it was beyond exhausted. Last week I lost full sensation in my left leg, usually my good leg, I couldn’t support any weight on it, I had to dig out the walking stick and drag myself around the house but within an hour – sensation had fully returned. Because everything had returned to normal, my initial fear subsided and I didn’t think much of it. 48 hours later, the same thing happened to my left arm – but instead of loosing full sensation – I just couldn’t lift my arm and I couldn’t even form a sentence. Exhaustion had fully taken a hold on my body. Eventually when I could summon the energy to lift my arm, I couldn’t move my hand – I was running on empty!
The next morning, I woke up to an entirely different world than I’d experienced before. My usual dull full body aching had been replaced with deep set aches, a huge heaviness to my full body and movement caused a hysteric reaction. I lay sobbing, unable to move without screaming, unable to lift my head and filled with anxiety. What on earth had happened overnight whilst I played still and peaceful, to cause such a violent and deep set musculoskeletal pain? I guess this is what the call a fibromyalgia flare, where the usual aches are amplified to the feeling of the flu on steroids.
Last year after seeing a number of specialists, they all came to the same conclusion; I suffer from fibromyalgia syndrome, and have full body musculoskeletal tenderness, sensitivity and pain. It’s always a huge relief knowing that what you’re experiencing is actually real, that it has a name and most of all that you’re believed. But after receiving my diagnosis, I was discharged and sent on my merry way to live my life with another chronic illness; no medication no help and no plans in place. Which was all fine and dandy at the time, because at the time I wasn’t in a flare unable to do barely anything, I was coping with the pain and everything it had previously thrown my way.
Stress got the better of me and of my body,- causing my body to say “no more!” … for my body to stop me in my tracks and stop functioning as normal. Alarm bells have been ringing, and I’ve ignored them to the point I cannot any longer. I’ve had five days of waking up in tears unable to take the pain, but unsure what A&E would do to help or if they’d even believe me.
I’m exhausted of trying to live this way, and moreso, of trying to explain to others the difficulties my body is experiencing and the true intensity of the pain associated. It hurts to lift my body out of the bath, to try and dress myself and haul myself up a set of stairs (let alone two) and heat is the only thing right now capable of providing any element of ease. I am trying more than anything to relax, but my muscles are trying to do the opposite …constantly.
Self care never looked so raw, its not about face masks and bubble baths – but taking stock of how you body feels, what you’re lacking and what you can do to provide balance in your life. I cannot focus on anyone else other than my own journey to wellness right now, a life where my chronic pain is manageable and not completely debilitating as it is right now.
Doctors appointment pending, medical records in hand – I’m ready for a fight for me to be able to live my life again and to gain the tools necessary to stop flares hauling my life to a stand still in the future.
Life will get better, sometimes you just have to reach rock bottom to be able to bounce back up to the top.
If you have any tips for living with fibromyalgia, flare ups or chronic pain please comment below.