24 Hours in a Chair
I know a lot of people have it worse, and I guess while I was writing some of my articles I realized some of my experiences may pale in comparison to others. If you expand to include other people's ailments then I know there are people who would beg for my sore back. This also leads me to the realization that that couldn't be the point. This community is for the sharing of experiences we have all collectively been through. I guess I want other people to know that I've been there too and had some hopeless bottom outs.
I may not be the most severe AS suffer but I feel all our experiences are valid. Being able to reflect on and connect with people who have had a similar experience is interesting and personal to me. It conjures up a range of emotions that I ultimately find comforting. In the spirit of this and to promote solidarity, I will share one of my true low points in combating AS.
My low point
I was working a job that involved being on my feet all day while living in a crappy cold house. My diagnosis was still years away. I remember waking up in the most pain I had experienced to that date, borrowing my flatmate's car spending an unbelievable amount of time descending the stairs and then attempting the near impossible task of getting into a car, (by show of applause who understands that nightmare?), drove myself to the hospital, do the equally difficult task of exiting the car. Then stand in the A and E for hours as my back constantly spasmed.
Out the door with no solution as usual
I was ultimately seen by a friendly enough doctor who went through the usual routine and gave me ibuprofen and sent me on my way. (Can I get a woop woop from anyone who's suffered deja vu constantly at the doctor?). Then it's out the door with no solution as usual. I made it back to the house and sat down in a chair. I did not leave that chair for 12 hours. Due to an unbearable need to pee, I staggered to the bathroom, then sat for another 12 hours. I remember my flatmate looking at me with the expression of "well it can't be that bad".
There is hope
Well, I am here to say it can be, and if anyone ever doubts the severity of what is happening to you, just know that out there sitting in Denmark, is a person who can totally empathize with you. Not just me either but hundreds of people are out there to connect with that can understand your struggle. There are even those that have managed to go into remission. When I was sitting in that chair I felt hopeless.
There are solutions
Today, I'm sitting in a cafe and rode a bike to get here. Currently, I am more or less pain-free. There are solutions out there, and unlike me, who piled coping mechanism on top of coping mechanism until the dam burst, and some Danish doctor took pity on me, I encourage people to seek any solution that doesn't damage them in the process. There are people who do understand your frustration and a little solidarity can go a long way.
Do you use the word disability to describe your AS?