An incurable illness isn’t what defines you but it plays a part in who you are, chronic pain and fatigue are unwanted passengers in the journey of life – These stowaways are heavy and make progress arduous like wading in a deep swamp for even the smallest journey.
My illness has a name, a long one that’s hard to remember but those that have felt its touch and cruelty know it off by heart. My passangers name is Ankylosing Spondylitis, it’s a curse and one I wouldn’t wish on anyone but we each must play the hand we are given and I do just that.
It’s a fancy way of saying I have an auto immune disease that makes my body think my spine is evil so it attacks itself, fusing bone so the spine and ribs slowly becomes rigid while it pulls your head down to the floor, yes it’s quite painful to underplay it massively.
If you suffer from the same curse just know that others out there understand, the pain you feel in your chest cavity, that hot cement like pain that radiates through your entire upper body, the inflammation and pain coursing through the blood making it hard to concentrate, your spine poking out between the shoulder blades feeling like it’s being ripped out slowly, the spasms from your muscles trying to protect you, the lower back pain that’s constant but in numbing waves of intensity – WE aren’t alone.
These flairs can come and go, sure you can be at a 13 today, but who knows maybe next week you will be a 10, or a 7. Hell why not wish on a star and a 3……….let’s be honest you will think it’s a 3 but it’s really a 5 and you over do it to end up an 11. You know I’m right 😂
I’m bedbound as I write this on a 12 but this is a good thing as I was a 13 yesterday, what I wrote above is what I feel in this moment, it’s not a new sensation don’t get me wrong after all I’ve been on this journey since I was 18, medicine wasn’t really as available then and I was crippled for a decade.
So what I’m saying is pain from this auto immune disease isn’t a stranger by any means more like a hibernating bear that awakens hungry and angry.
It’s easy to lose focus with the pain and that’s OK, chronic pain is a loud distraction and as I lay down here I realise my body is trying to heal, that’s why the fatigue is so thick and heavy – but it can’t break your spirit as AS warriors are tougher than that.
Ankylosing Spondylitis can bend you, and it will.
It will distort you and hurt you with every level of pain imaginable, but it will never break you.
It will never break me.
I will fight it
I will beat the flair up.
And so can you.
I guess I wanted to put all this down somewhere in a moment of clarity between the fog, that if you suffer from something like this, an illness without a cure that keeps you in pain just know that even at your lowest the power of the mind and a positive outlook can help you get over the top.
It’s important to know when to do nothing, to simply meditate……. Or binge on streaming services, whatever helps distract the mind so you can heal and get back to “normal”.
It works for me, but for now I just need some time to focus and heal.
Before I can run again
And be a little less cranky 😂