Something slightly different, but something I feel very passionate about and have wanted to discuss for a while.
There still seems to be some sort of taboo around invisible illnesses. People are still assuming that just because you ‘look’ well, you are – and that isn’t always the case.
I was diagnosed with Arthritis and Fibromyalgia in my very early teens, and to be honest, it’s all I’ve ever known. I don’t know what it’s like to not have it, and over the years I have just gotten used to it, I guess.
Even now, I don’t think some of my friends or family really know or understand just how much it affects me.
Arthritis kind of came first, shortly followed by the Fibro. I spent most of my teenage years in and out of hospital attending appointments; seeing different consultants, having needles constantly shoved in my arms for blood tests, seeing physiotherapists, and pain management specialists.
It took me quite a while to get used to having a chronic illness at such a young age. Other than members of my family, I didn’t know anyone else, especially anyone my age that had it. I struggled with my symptoms and how to manage my pain – which is something I am still trying to get used to now. I missed a lot of high school due to appointments and feeling unwell. How I passed my GCSE’s and A-Levels, I have no idea! I loved school and I loved learning new things, so it just goes to show that if you want to do well, then you can.
The Arthritis I seem to manage pretty well besides a clicky hip and weak joints. Don’t get me wrong, it’s still tough, but the Fibro is a whole other level! Fibromyalgia is still quite hard to diagnose, and isn’t very well understood, personally or professionally – trying to explain the condition and how it affects you is SO hard, even to family and friends. You can go from feeling completely fine, to having absolutely no energy in a matter of seconds.
For me, I struggle with the chronic fatigue. I am tired ALL THE TIME. But trying to get to sleep? Not happening. If I don’t sleep well, then it completely takes it out of me the following day. But sometimes, I can fall to sleep in seconds, sleep for a solid 6-8 hours, and wake up feeling like I haven’t slept at all and end up feeling even worse.
Some of the symptoms are very distinct and quite hard to describe. Fibro fog is an actual thing, so many people say that it just isn’t true, but I have it all the time. It affects your concentration, memory and can make you feel confused. If I’m having a flare up, then my Fibro fog gets worse and it can take a while for me to understand even the simplest of things.
Hypersensitivity is something else that I really struggle with. Imagine you had a really bad case of the flu – your skin feels bruised, tender and sore to touch, even the tiniest amount – that is the only way I can try and describe a ‘normal’ day. If someone was to gently touch my shoulder, it would feel incredibly painful, whereas if someone grabbed my shoulder a bit more aggressively, then it wouldn’t feel so bad. I know, it makes absolutely no sense.
My back feels like it’s in knots 24/7. It feels like if you could visibly see the pain, then I would be covered in bruises – but there’s nothing there.
Stiff joints and achey muscles.
Waking up and feeling like you’re wearing a concrete coat, or you’ve just got out of water fully clothed. Having a constant dull, heaviness about everything. Going from feeling boiling hot to shivering in a matter of seconds.
Numbness and tingling. This actually affects me more than I thought it would. It’s like a more subtle version of pins and needles, but ALL THE BLOODY TIME. It almost feels as if you have little ants crawling over your skin – it’s just horrible and so uncomfortable.
Even the tiniest things just take it out of you and make you feel exhausted. It has taken me a while to get used to that, and even now, ten years on, I still find it so frustrating and think I can do more than I probably can.
I have worked since I was 16 and went to Uni, so I have always been busy and I didn’t want to let my illnesses stop me from doing anything – so I didn’t. But my god, is it hard. Of course you can live a normal life with a chronic illness (of course some are much more severe than others, I am just talking from my own experiences), you can do it, but you will be knackered.
I work full-time as a digital copywriter and I love my job. Although it isn’t a physical job, I get home each night or get to the weekend and I am completely done in. I know that everybody is tired after work and after a busy week, but it’s such a vicious circle. The weekends go so quickly and I don’t want to waste them doing nothing – not seeing friends and family or going out for the day – but sometimes I just need to rest. Then I feel like I have wasted a weekend and feel so lazy.
Something I have started to learn to do is listen to my body and what it needs. If it’s 7pm on a Saturday night and I want to get into bed, then that’s fine! Sometimes, my body just needs a duvet day – and that’s ok.
I still haven’t completely cracked it when it comes to managing my pain. It’s difficult because I am only 22, so there is only so much medication I can take now, otherwise there will be nowhere for me to go as I get older and it inevitably gets worse. I’ve started eating a much healthier diet, partaking in gentle exercise – which has also helped me to lose just over a stone – I’m sure the extra weight wasn’t exactly helping either.
I also take a Berocca every morning with my breakfast and that helps take the edge off my 2pm/3pm slump and helps me power through (ish) until 5:30pm. There are small changes you can make each day that can make the biggest difference.
I guess the whole point of this post is to not judge a book by its cover. Just because someone looks perfectly healthy, doesn’t mean they are. Be kind and if you have a chronic illness, don’t let it stop you… there is still so much you can achieve.