Hello, I’ve got Fibromyalgia.
Why am I telling you? Do you know?
I really hurt today and I getting some bad formication (that is when it feels like your skin is crawling with ants.
Why am I telling you?
Because I’m surfing the fine line that anyone with any kind of illness, whether invisible or otherwise surfs on a daily basis. That is the fine line between moaning about my lot and raising awareness.
Anyone who knows me (or indeed who has met me briefly) will know that I am one of life’s soapboxers. I carry my little box with me wherever I go, I’m the kind of person that lectures children when they use the term “That’s so gay” and has even been heard to yell “I hope your Mother is proud of you!” at people as they walk in to the pop up strip clubs that appear in my town during Gold Cup week.
My illness is as invisible as Harry Potter in his fancy cloak. You can’t really see it but if you look closely you will notice that something is ‘off’.
When I post things on social media about Fibromyalgia or how it makes me feel, I’m not trying to say “Look at me! I deserve your pity!”, I’m mostly trying to say “Do you feel like this? You’re not alone, this is a thing. Does someone you know feel like this?”.
Yep, there are days when I just need to say that I feel like shite and I could do with some virtual hugs. I think we all do that on facebook and the like. It’s a pretty useful way of being able to let the world know that today might be a good day for dog memes and words of encouragement.
But I really hope I don’t spill over in to the moaning category. I go through phases of posting either videos, articles and things about Fibro because I get passionate about wanting people to understand. Not necessarily to understand my case in particular but the condition in general. I sometimes delve in to Fibromyalgia support groups online and I’m saddened by how some of these people are treated, how alone they are.
I am extraordinarily lucky to have a really supportive group of people around me but so many people don’t have that and by spreading awareness of what it means to have an illness like this, perhaps someone might pull their socks up and think “Wow, I was a dick to Simone, she’s really going through something.”
I guess I shouldn’t worry about what other people think, but I do. I try so hard not to give up and to just keep swimming and it only takes one person using the word “lazy” to really knock me down. It shouldn’t really, I should learn to think “Fuck you Susan!” but sometimes it’s hard to do that.
On the flip side though, it only takes a small kind word to make me feel like I’ve successfully moved a mountain. The moments of kindness that people show might seem tiny to them but to me they are just amazing.
An exceedingly lovely lady said to me the other day “I saw your Fibromyalgia video and I just wanted you to know, I get it.” I get it. On hearing those words I actually felt my shoulders relax a little. I felt a bit like I’d just cuddled a kitten.
This has turned in to a bit of a stream of consciousness, but it’s one of those days where my mind will do whatever the hell it likes!
So in conclusion, if it feels like I’m moaning, I’m sorry about that. If I’m sending information, give it a read and if I’m in pain……..maybe a picture of a cute dog? Or a racoon?
Warm and Fluffy Feelings