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.
Take care.
Laura x
Ohhh, Laura. And still you keep smiling, on the outside anyway. I’ve not long finished your book and I loved it – so much so I’ve mentioned it on a few of my own interviews. Soooo, I eagerly await the next, but … don’t panic, it will come. Writing, like reading, should be for pleasure. Gentle hugs, sweetie. I am so glad you at least know what you’re dealing with now and have a way forward Go you! 🙂 xx
Thank you, Sheryl, and thank you for the lovely mentions in your interviews – I have seen them 🙂 Yes, understanding the problem has been a big help. I was on a downward spiral, and nothing I did made a difference. The better weather is a lovely boost, and I enjoyed the Easter holidays 🙂 xx
Lovely to read those last positive paragraphs, Laura.
Hope you start to feel much better and fill those empty pages.
Thank you, June. I’m trying my hand at something a little different at the moment, but I think I shall be ready to head back into book 4 after that 🙂
Sp pleased to hear that the sun is shining again and your pillow soft, Laura – may the words begin to flow again xx
Thanks, Anne 🙂 The book events I attended, and the people I met were perfect, shining jewels that lifted my spirit no end 🙂 xx
Oh, Laura…It just shows, you never really know what another person is going through. I’m glad you have a diagnosis and that you’re finally getting some help. I hope things ease a little for you and it’s good you’re feeling more positive. Sending you a heartfelt, but gentle, virtual hug. Xx
Thank you, Sharon. I did ponder on whether or not to write this post, as I try not to say too much about my general health, but this affected my ability to write, not just from a physical angle, but mentally, too. Then, towards the end of last week, I started writing again, and I had that buzz of excitement in my stomach. It was such a relief and I was so happy, I thought the subject was right for LCOAW 🙂 xx
Hooray that you finally know…and can deal with it in the appropriate way!! And isn’t incessant pain awful.
Thanks, Carol. It can be very draining. Pacing myself today 🙂
Great post. Fibromyalgia is a bugger but there are things that can help and some great forums online. Onward and upward!! xxx
I have learned a lot in twenty-four hours, Lyn. People have been wonderful with their support 🙂 xxx
Big hugs to you my Kate Bush loving friend, I’m sorry you are going through this, but glad you understand what’s happening to your body. A decent doctor is worth their weight in gold xx
Thanks, Yasmin. We can work it back to about two/two and a half years. I just thought it was other factors coming into play. My RA team and my GP have known me for many, many years and they realised I wasn’t myself. Thank goodness for the NHS 🙂 xx
So sorry you’ve had such a hard time, Laura. Glad things are getting brighter and that you know now what’s been causing you all the trouble. Much love. xx
Hi Elle 🙂 Thank you. I’m looking forward to using my outside office, ie, the beach, once the sun is warm and the breeze drops 🙂 xx
So sorry you’ve had such a hard time, Laura. Really glad to hear things are on the up. Loads of luck with the next book. xx
Many thanks, Clare. If you’re going to the summer party, I shall see you there 😀 xx
Unfortunately I don’t think I can make it this time – and can’t go to the conference either! But hope to see you at one of the get-togethers very soon. xx
Laura, I can only echo what others have written. Fibro is debilitating (two colleagues of mine suffer and I mean suffer). I hope your health team can figure out a way forward for you. Great that you have a diagnosis too. Not just for your physical wellbeing but mental and emotional wellbeing too.
Much love and gentle hugs xx
Thank you, Shaz. I try to look for the positives in things, and I’ve spent more time with my family as a result of not actually being able to do anything 😀 That part has been rather lovely xx
I never realised. What a terrible time you have and yet I really admire the way you have and are dealing with this dreadful condition. I wish you lots of success with your writing which I am sure will continue and I hope, become easier for you, and I send you positive vibes for great management of your condition so that you can cope and live life the way you want. Keep well, keep writing, thinking of you. xx
Thank you, Jane. It was frustrating, but now I have something with which to work 🙂 The problem was, having lived with RA since I was 17/18, I automatically assumed the increased fatigue was down to that. So many things now make sense. I am very lucky to have such great support from my family and friends, online and in real life 🙂 xx
Well I am full of admiration for you and your achievements and I am sending positive vibes for you for the future, writing and health. 🙂 xx
So glad you have a diagnosis at last. A step in the right direction. I can’t imagine what you’ve been through. Sending hugs and hoping the sun keeps shining for you. xx
Thanks, Jo. 🙂 xx
Your blog has given me hope. I suffer from this fibromyalgia too, and some days I feel as if I should go to the vet and be put down rather than try to carry on. As for writing, the ideas are all in my head….I have several books done but not edited etc and I don’t have the energy most days to do it. I try to ignore the pain as it might go away, but we are kidding ourselves.
Today, being one of my ‘not so nice’ days, your blog has brought my smile back…with hope and the thought that I’m not just being lazy.
I wish you the best. xxxx
Oh, Jo, I’m so sorry you too have FM. Your words about not being lazy sums up precisely how I felt when I received the diagnosis – ‘It’s not me being lazy.’ Once I realised that, I decided it was time to be kinder to myself. The guilt lifted. FM (and in my case, RA too) is not an excuse, it is a reason why we are not always able to participate.
I’m glad the post brought you comfort and raised a smile.
Take care xxxx