I was diagnosed with fibromyalgia at the age of nineteen, which – as I write this – is almost fifteen years ago. Until then, I had never heard of this condition before so I didn’t know what to expect. My consultant informed me it was chronic and I would have to find ways to manage my pain and other symptoms.
Fibromyalgia is a condition that causes musculoskeletal pain, fatigue, tender areas, sleep and cognitive disturbances, and more. Fibromyalgia impacts me on a daily basis and although I have quite a few other chronic pain conditions, I can usually separate my fibromyalgia pain from the other types of pain I experience. This may sound absurd, however, I have lived with chronic pain most of my life so know my body well enough to distinguish why I’m hurting.
You’d think the worst thing about living with fibromyalgia would be the pain, and you would be right. It’s at the top of the list. But the fatigue has also been consuming and the brain fog increasingly frustrating.
A week in my life with fibromyalgia is unpredictable. I can’t tell you how I will be feeling from one day to the next and it makes planning things really difficult. Yet, I have to make a plan because all activities, including chores, have to work around my condition. I even have to plan which days I intend to shower, because I know that I won’t be able to do anything else on that day.
Surely showering is easy – right?
Nope, not when you live with fibromyalgia.
I have a wet room with a shower seat that my boyfriend helps me with, and yet I am still exhausted and in agony after a ‘simple’ wash. I can’t relate to people who love bathing and find it relaxing because to me it’s torture. Fibromyalgia affects my central nervous system and everything is amplified by the lightest touch.
Warm water running over my skin feels like I’ve been caught in a vicious hailstorm – but one that I have subjected myself to. It’s far from pleasant and definitely not relaxing. I try to shower at most twice a week because it sucks me dry of the little energy I have. Before I was diagnosed I used to shower every day and couldn’t understand why I was always so exhausted. Now I live for dry shampoo and baby wipes to keep me fresh between washing.
I also plan my showering around whether I’m going out. If I am going out on Tuesday, I’ll shower Monday morning and take all of Monday to recover. Sometimes it happens that I wouldn’t sleep well that night because my fibromyalgia pain would attack my legs and it’ll ruin my Tuesday and the shower will have been for nothing. Which brings me to my next point...
The night-time pain is a constant battle. If it’s not in my legs, it’s in my back, my hips, my chest. Once my chest pain was so bad that my boyfriend called an ambulance because I thought I was having a heart attack. This horrific chest pain happens a few times a week now and although I am used to it and know it’s nothing to do with my heart, it is still extremely scary and agonising.
Most nights I struggle with leg pain that is a dull, deep ache that interrupts my sleep and continues on into the next day. I have spent many a night in tears because I’m so tired and the throbbing in my legs will not subside. Then when I do sleep, I wake up exhausted because it has been broken up so much by the pain and restlessness. I can’t remember a time that I have woken up refreshed and ready to tackle the day.
Brain fog and fatigue
I’m lucky that I work from home. I pick my own hours. I write from my bed while in my pyjamas. If it feels like fibromyalgia is destroying me then I rest and don’t push myself to work because it’ll only end up worse in the long run.
Nevertheless, being a writer with brain fog and fatigue is incredibly frustrating. I’ll be in the flow of a paragraph and suddenly I can’t summon the most obvious word to mind. My memory is massively impacted, and I have difficulty concentrating because even if I’m not having a particularly bad day, the pain is always there in the background. The fatigue always creeping up on me, and the brain fog seeping in.
Not a day goes by when I’m not dealing with some kind of symptom from fibromyalgia. It is a chronic condition and very difficult to live with and I can’t change the fact I have it. So I do my best to savour the simple things and make good memories.
NPS-IE-NP-00120 May 2021