Giving Up What We Love
Those of us with AS have to deal with a lot of loss. We do gain quite a bit too, but we lose a lot of what we once were. I’m going to talk a bit about what I’ve lost during my AS journey.
Losing my interests
I’ve never been an extremely busy person, but I used to have interests that were more social. I’m definitely a homebody, and I’ve become even more of one since I’ve had AS. One of my favourite things to do was go to concerts. Any time a band I liked was in town, I would go. I would be there before doors, get right up to the front, and wait through the opening bands just to be close to the band I was there to see.
Nowadays, I don’t really go to any concerts. The last time I was supposed to see a concert, I got too nauseous and ended up not being able to go at all. When I am able to go, I don’t really care about being up at the front anymore. I’d rather sit at the back, or find a wall to lean on. It causes me so much pain to be standing for hours at a time, and by the end of the night, my entire body feels like it’s on fire.
It makes me sad knowing that I can’t really do certain things I love anymore. Concerts used to bring me a certain kind of happiness that I could only find by going to them. Now, they mostly just bring me pain and fatigue for days after.
Losing my hobbies
I used to bike a lot during the summer. My Dad is a biker, so we would go on bike rides together a few times a week. During my first year of symptoms, my hips were extremely weak, so biking was absolutely not an option.
During my first year of diagnosis, I was on biologics and things were a bit better, so I was able to bike more than the previous year. It still wasn’t as much as I did before, but hey, at least it was something!
This year I biked twice. I’ve been dealing with a lot of fatigue and depression this year, so I haven’t really done much of anything. Most days it’s a struggle to get out of bed to wash my face and change. Biking isn’t exactly an easy exercise, particularly when you’re tired, so I kind of gave up biking this year.
It’s hard to accept
It’s definitely been hard for me to accept that I just simply can’t do a lot of what I used to be able to do. This is a hard pill to swallow, and we have to do this for as many hobbies and interests as we have. It’s kind of the gift that keeps on giving (not).
Giving up what we love to do is also something that will be continuous throughout our lives. As I said, this year I’ve dealt with a lot of fatigue, so I’ve given up more interests due to being too tired this year than I had to previous years. As more symptoms appear, we have to give up more. That’s just the reality of having a chronic illness.
Hopefully though, with time, we can find new hobbies and interests that cater to our needs with AS. Things that make us feel warm and good inside, just like our old hobbies did for us.
Do you use the word disability to describe your AS?