The Constant Struggle of Fatigue
Fatigue is something I don’t think I’ll ever escape as a sick person. As sad as that makes me, it’s just something I think we all have to accept and try to live with. The monster we all hate, fatigue.
When I first got sick I dealt with this a lot. It was almost impossible to go out for a day (or even half a day) without being in bed for days after. Since I started my biologic treatments, it’s gotten better, but it definitely hasn’t gone away. Sadly, I don’t think it ever will.
Trying to be "normal"
Just recently, within the last week, I decided to try to be a "normal person" again. I wanted to do 5 busy things in 5 days. What a mistake that was. To be fair though, when the Raptors make it to game 5 and could win it all, I think going to downtown Toronto on a Monday is a good exception.
My body didn’t think so. I had my infusion the next day and that was it for me. I got my usual infusion headache and was exhausted for the rest of the day. Wednesday my nausea decided to attack me. I was nauseous from the moment I woke up to the moment I went to bed. Never sick, but nauseous the whole day. Can I just mention that being nauseous all the time and not quite knowing why is EXTREMELY frustrating?
Thursday, my body was so fatigued that I could barely get out of bed. My legs were weak, my eyes heavy, and I couldn’t focus on anything. I decided to give myself a day to stay in bed and sleep. I slept til 4:30 pm. Luckily as the night went on I felt a little better, but my legs never really got back to normal.
I’m writing this on Friday, and I’m still exhausted. I could barely sleep just due to the discomfort of my body all night. I know we all have these nights, and it’s so much worse when you have something to do the next day. Luckily I don’t, but I’ve been to those early morning doctor’s appointments with very little sleep. It isn’t fun.
Sticking to our routines
Fatigue is an everyday struggle for those of us with not only AS, but all chronic illnesses. I know how important it is for us to keep to our routines, but with life taking over lately, yoga and eating healthy have just gone out the window. I know how bad this is for fatigue, so please try to stick to what you do every day as much as possible. We need our routines to help us function every day. But of course, if you need a day or two in bed, please give yourself that. It’s so important. I’m sure if I didn’t give myself that, I would have burned out very soon.
Sharing what you know
As annoying as dealing with being tired all the time is, it’s something that we have to learn to live with. I’m not saying we have to accept it and get used to it right now, but I feel if we all share what it is that helps us during these times, we can help others find what they need during times of extreme fatigue too. If you have any tips, please comment with them so we can get them circulating in the community! I know this is an important topic because it’s the one that plagues me the most.
Do you use the word disability to describe your AS?