Fibromyalgia.

My story

I have fibromyalgia, it is a syndrome which means there are lots of symptoms and issues that go under the umbrella of fibromyalgia. It means that I have lots of symptoms ranging from chronic and widespread pain, sleep issues, sensitivity to sounds and touch, stiffness, cognitive issues also knows as fibro fog, memory issues, headaches, IBS and other random issues that come and go.

I also have the chronic fatigue that often goes alongside Fibro, so even though I feel exhausted all the time, as you can see from above I also have trouble sleeping. I have arthritis, officially in my neck and hips, but I suspect it has spread. It hurts my hands to do things, like sewing, knitting and of course my beloved writing, painkillers and voltarol are my friends.

I take many tablets including pain killers every day, they mostly just take the edge off areas so that I can function. I am not as worse off as lots of other sufferers, as I do have a job, even if it is only part time.

I was diagnosed eleven years ago and of course it has taken over my life. It means that I cancel dates with friends, I can’t do anything of an evening if it’s been a workday, I have to take what I call ‘a rest day’ usually once or twice a week, it depends how busy I am. The doctors tell you to rest and spread everything out, but every sufferer I know, when they have a good day (where the pain etc hasn’t gone but it is a better day) they get loads done as come tomorrow they might not be able to do much at all. But of course because they had a such a busy day they have made themselves worse for the next day.

There is a cumulative effect that they don’t tell you about. Imagine if I’ve had a few days off work and then I go back, because I’ve been off I feel better that first morning back, by the afternoon I start getting tired and am waning a bit. That night I am exhausted but I’ve been worse. The next day I start off exhausted as I worked the day before and it gets worse as the day goes on. If I have to work the next I am shattered and probably unable to do much apart from just be there. The fourth I am unable to turn up.

I am lucky in that I do work part time and among that I only have two days in a row at the moment. There are so many people worse off than me though, they can’t work, they might not be able to walk properly and would never be able to hold down a job.

There are times when I limp because my hip is quite painful, I even have a stick or two for really bad days but fortunately I haven’t had to use them in a while. Mainly because I have learnt how to manage my illness, I also have a few other illnesses but they are managed well by taking tablets.

As a writer, it often influences how much I can do, how much my brain works and even sitting for too long can make things worse. I always have a headache, though of varying degrees, I have problems remembering character names or places. I’m always forgetting how old someone is or what colour their hair or eyes are. It just means I have to make a note of everything. This happens to many people/writers when they get older, but imagine it ten times worse. I use writing software and in that I can make extensive notes of all my characters, places, artifacts and the like. I am always physically writing things down, in notebooks (I love a notebook, you can never have too many) or on my phone. Every time when I start writing I have to read back quite a way to see where I am, I know that’s normal for writers anyway but sometimes I really can’t remember what I’ve written.

Doing research is frustrating, as don’t retain new information very well. I often have to research the same thing several times, knowing I’ve been to that site before. What do they say ‘That the biggest lie you will tell yourself, is that ‘I will remember that!’ I have trouble typing too, I make a lot of mistakes and the more tired I am the worse it gets. When I am tired my voice can start slurring and I use the wrong words all the time, also when I walk, it can look like I’m drunk as I’m weaving all over the place.

I have many days where I can’t write as I’m too tired, my headache is too bad, or I just feel completely awful.

I am not writing this so that people will feel sorry for me, I just want people to know a little of what it’s like. Plus lots of people are ashamed of having fibromyalgia and like other illness, menopause, depression etc it’s just not talked about.

Fibromyalgia does not define me, it does not rule my life, it is just a part of me that I and others have to live with, like having blue eyes, or having two left feet. Yes I know it affects more of my life than the others would, but I am still learning to live with it and always will be managing it to the best of my ability. So if I don’t reply to messages, or it takes me a while to write my books or blog, or post more social content, then so be it. I am fed up of tearing myself to pieces because I can’t do things like ‘normal’ people can. We all have our issues whether they are physical or mental and that is okay, just be there for us when we do make an appearance.

I wanted to let all the other people who have fibromyalgia that you are not alone, there will be good days and those people who you class as real friends will be there for you when you do manage to walk, crawl or drag yourself out of your nest.

It has actually helped me to write this out, as I’ve not told people online about it and it feels a relief to let the world know, this is who I am and that I am proud of me.

If you’ve got this far, you have my undying thanks.

Christine

January 2023