Acceptance of Life Changing with Ankylosing Spondylitis
From a young age, I knew I would at some point have problems with my back as scoliosis is quite dominant in my family.
However, I didn’t quite expect to have the problems I landed with!
I’ll keep it short and sweet.
My ankylosing spondylitis diagnosis
Basically it started with mild scoliosis in my early teens, followed by an operation to insert two 9inch rods which now hold my head onto my body.
These were needed because part of my spine/odontoid peg was removed due to it being lodged in my brain stem. Yes, very dangerous!
But I’d managed to get to 30 without paralyzing myself.
Then the back, hip, bum and neck pain began.
A delayed diagnosis
It took me 5/6 years to eventually get a diagnosis of AS along with scoliosis at the top and bottom, bone degeneration, fusing of the spine and a few other bits!
I’m still fighting to live a normal life as a SEN teacher with two grown-up children, but I’m slowly becoming aware I just can’t do it anymore.
I’m reducing my hours at work regularly and home life is leaving me miserable as I know I’m not me anymore.
Looking for hope
I’m exhausted and grumpy all the time and always in pain. The anti-TNF meds, which I pinned all my hopes on and convinced myself were working, I’ve realized don’t do anything.
What’s the alternative after this?
I’m left feeling scared, hopefully, you can give me some hope.
Do you use the word disability to describe your AS?