I’ve just recovered from my last flare up and finally feel back to normal, whatever that means. Perhaps normal is being able to hold this pen without a struggle, producing handwriting that is neat and not childlike.
The strange part is, I can barely remember what it felt like during the last couple of weeks. We move on so quickly, in this life, nothing is sacred. We take tablets to allow our bodies to shift whatever infection we currently fight, and yet we do not often stop to question why, why we became so unwell in the first place, what was going on in our minds or in our lives. I must force myself to remember otherwise people will never know how it feels.
For me it starts with soreness. One random part of the body becomes tender, often on the same side, the first indication of what’s to come. Sometimes it passes, but other times is stays and escalates. As it progresses, for me it moves around the body with increasing levels of pain, discomfort and fatigue until it takes over. And when this happens everything becomes difficult. Small daily tasks become big challenges, being able to concentrate on anything…
When we become sick our bodies are communicating, telling us to rest. The natural healing process kicks in: we take time off work, sleep more, temporarily switch off from our responsibilities, but how do you cope when you cannot even do this? When even watching mindless television becomes arduous. Trapped inside an aching body, your biggest task is to find a comfortable position, but of course there are none.
I recently looked back on something I wrote down last year when I was attempting to document the effects of this condition. It’s very powerful to read but also to look at given that my handwriting is completely different, very scruffy. I remember how hard it was to physically write down my thoughts:
Thursday 6th September 2016
“I find myself needing to write, once again to express how I’m currently feeling. In comparison to last week I am much better, although I am in so much discomfort I want to cry, or fall asleep quickly so that I can wake up feeling normal again.
“It really hurts walking up the stairs to bed, as if I’ve had a hard day at the gym, when in reality the only exercise I’m able to do is walk around the park, not even a full circuit.”
“I want to tell you how I’m feeling but I barely have the strength to write. I ask my partner to pass me my notebook, it takes a little while but eventually I manage to write, like a child messy and quick, my letters don’t join. I need to get the words out while my arm lets me.
I lay on the sofa with tears streaming down my face, it’s too much effort to wipe them away. I flop from one position to another, desperately trying to find comfort, but I do not.
My leg is sore, it hurts when it touches the sofa or someone presses on it. My chest is tight again, so my breaths are big and deep, I never seem to take in enough air.
I was so hot that I had to change into shorts, how can I now be freezing cold, on a hot summer’s evening? My arms ache, other parts are becoming sore too. I move onto my other side.
I need water but I dread trying to stand, I’m not sure my feet will hold me up but I must try, no one likes to be a burden. I’ll bring the water closer.
All I want to do is relax and yet I can’t, why is that? No ability to focus on anything productive and yet no ability to simply relax. The tiredness is overwhelming but if I go to bed at 8pm will it disturb my sleep?
I’ve thrown the blanket off me now as I fidget around the sofa. I’m boiling hot again. I wish someone would carry me to bed.”
I can picture myself writing those pieces, I know exactly where I was at each time. And yet the description feels so alien, like a character in a story, surely that wasn’t me? Today is a good day, I’ve managed everything so far without a rest. Fibromyalgia, the invisible illness.
I wish people could witness the other side of the condition, they only see you at your best. A friend recently said to me that I appear to be sick a lot, I tried to explain that it’s part of the Fibromyalgia, that’s why you don’t always get to see me. I don’t want to be known as someone who is constantly ill, I rarely suffer from colds or viruses. I just want people to understand, there are good days and bad days.
In fact something dawned on me last weekend when I was away in Norfolk walking through a beautiful country park. I realised how it felt to be normal, whatever that means. That day, for me normality meant going out for a long walk without the fear of not having enough energy, secretly wanting to head back to the car whilst everyone else enjoys themselves. For the first time I was able to enjoy the walk fully, to appreciate the beauty all around. I took a photograph to capture the moment, to remind me in the future. I wish I could bottle up that feeling and carry it with me through the bad days.
I’m not angry about this condition, even though there is little information or cure, I am grateful for all that it has taught me. It makes me proud of my achievements, it shows me when I need to slow down and rest, it has even forced me to read books again, when I have the time.
Most of all, from writing this I want to reach out to those who are also suffering and to raise awareness of the mysterious condition that is Fibromyalgia. I hope this gives an insight into that friend you barely see, the one who is secretly trying to stay positive, just to get through each day. I want to demonstrate to sufferers that it can get better, despite the difficult days.
I recently set up a crowdfunding page to raise funds and reduce suffering through self-development and Sound Therapy. I aim to provide a number of free healing sessions via sound baths in different locations and workshops based on anxiety and depression, offering tools and support to cope with poor physical and mental health. This process has led me to research my condition further, it is very comforting to know there many others having a similar experience.
So what is Fibromyalgia?
It is a largely misunderstood and frequently unknown medical condition characterised by chronic pain and tenderness. Secondary symptoms include severe fatigue, problems with memory known as ‘fibro-fog’ and broken sleep, which often result in mental health issues (such as anxiety and depression) and an inability to complete normal daily tasks. Additional symptoms can include numbness, tingling, sensitivity to light, noise and temperature and restless leg syndrome. Each case is very unique and varies from person to person.
How can I help?
There is currently an online petition to increase visibility of Fibromyalgia within Parliament with the intention of it becoming a fully recognised disability. If you feel inspired to help please start by visiting Change.org and signing the petition.
Please also take a moment to watch the video on my crowdfunding campaign and share as widely as possible. All donations are very welcome no matter how small and will be put to good use to help others in 2018.
Looking for support? Fibromyalgia Awareness UK support sufferers and raise awareness of the condition through groups and events.
Together we can reduce the suffering ❤