For over two years I’ve struggled with symptoms of ill health which I’d put down to being a woman in her late forties and my rheumatoid arthritis. I’ve experienced headaches that floor me, limbs that can’t support me because they’ve turned to jelly or they’re weighed down with concrete blocks, interrupted sleep, dizziness, nausea, the usual sore and painful joints, and starting each day convinced someone has concertinaed my feet into my shoulders overnight. Every morning I would say to my husband that my pillow was made of rocks.
My focus was shot to pieces and my memory was full of holes. There were times when I struggled to recall people’s names, which I found highly embarrassing as I’ve always been good with people and places. I was fatigued – more so than my usual fatigue that comes with RA – there were days when I couldn’t be bothered to change the channel on the TV because it took too much energy. Thank goodness for my friends and family, who never questioned my actions, or inactions, and who never pushed me to be or do more than that which I felt able.
The symptoms increased – the pain was worse, the headaches lasted longer, the waking up feeling like I’d been in a car crash happened every single day, and I was exhausted. The thing is, I’ve lived with pain for over thirty years. My mind set is that some days are better than others, the bad times will pass, and tomorrow is another day. I’ve always tried to focus on the positive. I never put much emphasis on not being able to run around with the children, choosing instead to enjoy the wonderful times I spent reading to them or listening to them read, watching Barbie or Thomas the Tank Engine videos with them, or simply chatting.
My children are older now, extremely capable and have strong independent streaks. Thank goodness, as this recent bout of poor health knocked me so flat, I couldn’t go out, I couldn’t concentrate for any length of time, and I couldn’t think straight.
And I couldn’t write.
I had book four planned. I knew the characters, the plots and subplots, the issues, the romance, the first twenty thousand words – I had it all, ready to go, but I couldn’t muster the energy to do anything. If I managed to get myself to the computer, headaches would kick in within fifteen minutes and that was me neutralised for the next few hours. I resorted to sitting in a comfy chair in the living room, intending to write longhand, but even that was beyond me, partly down to the lack of focus and headaches, and partly due to my dodgy hands and fingers. I tinkered about a bit on my laptop and it seemed the change of position and the distance of the screen helped for a brief time, but still I wasn’t writing. I was putting together promo pieces for my existing books – creating ads and images to use as pinned tweets. I felt I was doing something positive. Something other than nothing.
But I should have been writing.
It became my mantra. I should be writing. I should be writing.
I should be writing.
I’ve always managed to write through the bad times. Always. Why was this so different?
I think I’ve just worked it out; quite literally this minute, as I write this post with hindsight: I didn’t fully understand what had changed and it was hard to see an end to the constant cycle of lack of sleep, fatigue, pain and brain fogginess. At that point there was no promise of a better day, the bad time appeared to have no intention of passing, and tomorrow was another day of much the same. Or worse.
In October 2015, in a regular, scheduled RA appointment, when I explained to my rheumatologist that I lived each day feeling as if I’d walked into a brick wall, that my knees and hips hurt more than normal, that I suspected my jaw was the culprit of the severe headaches, he checked my medical records, gently pressed on a few pressure points around my body, which had me hitting the ceiling, and asked if I experienced other symptoms such as dizziness, lack of sleep and confusion, all to which I said yes. His conclusion surprised me but at the same time, I felt validated.
‘Mrs James,’ he said, ‘it’s fibromyalgia.’
I recall returning home with a sheet of paper which contained addresses of FM websites, in my hand, walking into the living room and my husband asking me if I was all right.
‘Yes’, I replied. ‘But this explains the last few years.’ I handed him the paper, his brow went up, and he nodded.
I hadn’t gone to that appointment seeking answers. I’d gone for my regular RA consultation, but thank goodness for my marvellous doctor and his team. I’ve been again since and between the rheumatology department and my wonderful GP, we are finding a way to move forward with the FM.
The best bit? I’ve managed some serious blocks of sleep and within the last week, I’ve got back the writing bug.
Before finishing, I wanted to thank my publisher for their patience and understanding, and say thank you to all my friends and family for the support, care and space they’ve provided.
I realise this has the potential to be a long and winding road, but today, the sun is shining, my pillow is soft, and I’m excited at the prospect of an empty page.
And tomorrow could be even better.