Fibromyalgia is a fickle illness. It is not steady with a small set of constant symptoms. Instead, we fibronauts have what we like to refer to as flares: days, weeks or months when every symptom you’ve ever had (and possibly a few new ones) happen all at once and at a severity that takes your breath away.
I’ve just had one of those flares.
I am improving, slightly, gradually, in infinitesimal increments. I noticed because today I managed to shower AND use my face scrub AND put on the shower moisturiser. Of course, I did need to lie down and recover afterwards, but this would have been impossible a week ago. Just before Christmas I couldn’t walk. I had to shuffle, both hands holding onto my stick, taking baby steps and crying because the pain was so bad.
Compared to then, today is a good day. But let me tell you about my good day.
I’m trying to have a codeine free day. I rely on codeine to stop me shitting for Scotland (IBS). I may have to give in and take some yet. I have a lot of hip pain, sitting or standing, but standing makes it so much worse. I have pain in the right side of my belly that alternates between an ache and a shooting pain. Both elbows are playing up. My hands hurt and I’d have trouble holding a hardbacked book. (Thanks you, mr Bezos, for my Kindle and such a wide range of books). My throat is sore. My eyes burn. And I am so, so tired. Yes, before you ask, as far as I am aware I got a decent enough sleep, but we fibronauts just don’t have restorative sleep like most of you do. We go to bed exhausted, take ages to get over because the pain makes finding a comfortable position next to impossible, and wake up every bit as tired as we went to bed. My back aches. Again, standing is a bitch and not something I can do for more than a minute or two at a time. I shouldn’t have had such a long shower. I will pay for it. But the warm water on my skin was so soothing – apart from around my waist where allodynia makes the skin interpret the slightest touch as a 3rd degree burn. Brain fog is worsening as the day goes on so I’m writing this before I get too stupid to find the words.
And today is a good day. Can you imagine what my bad days are like?
I’m not unique. We are many.
I’m not the worst. Some suffer so much more than me.
Our illness is under-funded, under-studied, misunderstood.
We are invisible.
You will probably know someone with fibromyalgia. You’ll recognise them because they either make plans and cancel, or turn down so many invitations that you stopped asking them to do stuff. They’ll be staying at home with Netflix while you go shopping. You’ll pop round to see them to find them still in their pyjamas and three or more days away from a shower cos they’re just too damned tired and sore to make the effort.
I write this not for sympathy. I neither need nor want it. I write this to raise awareness of what so many of us put up with in silence, day in, day out. I write this to help you understand what our lives are like.
I write this to be visible.