For those unaware, the 3rd – 10th September is Fibromyalgia Awareness Week.
As with most awareness weeks throughout the year, every awareness week aims to raise the profile and awareness of the said condition, disease, disability, or whatever it may be. Fibromyalgia is no different.
Given that Fibromyalgia is an invisible illness, and so many people worldwide suffer from it, why not use this week to broaden people’s perception of the illness, help with understanding the condition and provide knowledge to those around us, to better help each and every one of us.
Now having only officially been diagnosed in April, i myself, am not an expert. This is a condition I’m still very much at beginners level, heck I’m barely at the start line. But what I can share with you, is my experience of Fibromyalgia. The symptoms I face on a daily basis and how they affect my life.
Fatigue. For me this is a massive side effect. I never ever used to be so tired, but trying to explain this tiredness is hard. It’s not the “I didn’t get much sleep last night” tired, it’s completely different. Your whole body is exhausted. Think of how you feel when you have the flu. Then multiply that by 10. Somewhere around there is the level of fatigue you experience. Some days, it’s hard to even function your body is so drained.
Itchy. I originally put my itchy skin down to something that didn’t agree with me, washing powder etc. Turns out it wasn’t. But this is also a hard symptom to describe. It’s not a feeling of a rash itchy, it’s more like miniscule ants crawling over you but they won’t go away. You itch, but you can’t stop itching, and it moves all over. I’ve caught myself so many times just stand with both hands scratching away, arms, legs, neck and worst of all my back.
Temperature. I’m either always cold or always hot. There’s no in between anymore. On a hot day, of course, I’m hot too, but I feel twice as hot, burning. But the next minute I’m freezing cold and in bed with a wheatie and hot water bottle shivering. It’s like my body doesn’t have a thermostat any more, or at least a working one anyway!
Memory/Brain Fog. This is also a particularly symptom of Fibromyalgia. Imagine trying to have a conversation but actually not remembering what the next word should be. I’m forever taking the long way round and playing a bloody game of charades, trying to get people to say the word for me just so it clicks in my brain. It’s honestly the most embarrassing thing in a professional situation. My memory is a quite good, I remember the important things, but little things for example, things I need to do that day, probably aren’t going to happen unless they’re written down… And I remember to look at the list.
There are so many other symptoms, I’d be here forever writing about them,and especially how and every person is different. But as I said before, Fibromyalgia is new to me, even though I’ve had it for quite some time before being officially diagnosed, so feeling able to talk about it, when I’m just learning about things myself, makes me feel like a fraud.
A while ago I heard something that got me thinking “Everyone thinks they have Fibromyalgia”. Not everyone thinks they have Fibromyalgia. There are those of us who have gone and are still going through the process of having a confirmed diagnosis, decades in. It’s definitely not a diagnosis I ever wanted to have, but I am glad that all these symptoms I have every day, have a reason, they are there because I have an invisible illness. They aren’t there just because I think that’s what I have, they are there because it’s what I DO have.
So before judging and thinking you know everything about it, read up on fibromyalgia, see what this disease entails. See what that individual goes through on a daily basis.
See more than Fibromyalgia, see the person in front of you.
If you’d like to show your support for Fibromyalgia, here are some ways you can do so:
- Sign this petition, to help get Fibromyalgia re-classed as a disability Petition
- Add a twibbon to your social media accounts – use this link: Twibbon;
- Join the FMAUK (Fibromyalgia Action UK) thunderclap ThunderClap;
- Spread awareness by liking and sharing posts over your social media accounts;
- Take a selfie and post on your social media using the #FightFibro hashtag;
If you’d like more information on Fibromyalgia, please head over to the FMAUK website.