I am a 31 old female living in Poland got diagnosed one month ago. I can't even count how long I have been dealing with the huge, huge pain.
It all began about 8 years ago when one day I just couldn't move. I spend all night lying on the floor and crying. My hip was hurting so bad that no medication was helping.
I started my journey with doctors who just had no idea what is wrong with me because the scan of my hips was just fine. They suggested it is all in my head!
The pain is getting worse
So as I got traumatized and years went by, I started having big jaw and neck pain -I thought it's the 8th tooth -I got rid of 4 teeth! 😅 and one day I just couldn't move my head around. It got worst and worst.
I was working with a manual therapist for over a year and it gave me just a little better move control but nothing more.
In my country, if you can't afford private visits you wait and wait, and call, and wait, and call, and go to sign up, and wait...for every single medical procedure. That's why my whole diagnosis took so long...
Trapped in my own body
I was barely functioning at work, each and every breath was hurting. I didn't let anyone know how much pain I was feeling.
The doctor already gave me some immunosuppressants before the full diagnosis so I've taken them for 2 months now. But the official diagnosis was given to me at the end of April.
I am about to start biologics when the hospitals will open. The side effects scare me just as the disease does.
I feel trapped in my own body. From a brave and happy woman, I became scared and unable to drive a car or work.
Finding what helps me
The fatigue is overwhelming. I became obsessed with researching and trying different protocols and diets, but nothing seems to help except exercise.
How is this possible nobody knows the exact cause and cure? I can't believe I was trying SO hard to be healthy and ended up with a chronic illness.
I have a loving boyfriend who is helping me every single day, I am so grateful to have him but I can not imagine living like this for the rest of my life.
I have no idea how to get through this. Sorry for being pessimistic but this is how I feel.
I really hope one day I'll come back to this site and write down something uplifting 🙂 Stay strong spoonies!
Do you use the word disability to describe your AS?