My Biggest Challenges with AS
Having ankylosing spondylitis comes with a lot of challenges. We face difficult situations every single day, and new ones can pop up at any given time. It’s not exactly fair, but that’s something that we have to deal with having AS.
Some of the biggest challenges we face can be “simple” to other people, but debilitating and frustrating for us to deal with. I wanted to talk about some of mine.
Sometimes it can take me close to 5 minutes to conquer the stairs in my house. There’s not even that many of them, I just have to pause a few times in order to make it up without falling over. I have to hold onto the railing trying to scale my way up the mountain that is my staircase.
For those reasons, I try to limit the number of times per day I go up and down them. I either stay on my lower floor for longer or hermit myself in my bedroom to avoid using them. On days where I’m really fatigued, I’ll use my cane for support going up and down the stairs.
Fatigue has been another one of my worst enemies while having AS. I’ve had a bout of chronic fatigue for a good 7 months now, which at some points can be completely debilitating.
It can keep me in bed for days and unable to do the simplest of tasks. Something as “easy” as getting out of bed to brush my teeth can seem impossible. If I do manage to be able to do it, I’m right back in bed and exhausted.
Fatigue has been very frustrating for me, especially when it’s been ongoing for so long now. It’s definitely hard to accept that at 24 I need to spend a lot of time in bed. I try my best to give myself the rest that I need in order to keep my body and mind going, but when it’s for days on end, it gets hard to handle.
Before this pandemic, going out was always a hard task for me to accomplish. In the last 3 years, it’s gotten progressively harder and harder to go out and see friends or go to appointments that are far away. I know that I’ll need to save up energy for a few days before going out for a day, or even for a few hours.
I also have a lot of anxiety about going out and leaving the house, something I didn’t think I would have to deal with in my 20s. What if I leave the house and experience a flare? It happened to me once when I went downtown to see a concert. As the night when on, my pain progressively got worse and worse until I had to use my friend as a human crutch to be able to walk.
Going out and trying to live a somewhat “normal” life is proving to be harder and harder as the years go on, but I’m hopeful that I can get my symptoms in control enough to be able to be at least a little social again.
What are some of your biggest challenges with AS?
Do you use the word disability to describe your AS?