First major flare
I’ve been diagnosed for about a year now, I’m 23. I’ve been taking my meds, doing good (for the most part). I go to the gym 5 times a week, I’m grateful to be working a full-time job. I’ve had a couple of flares since diagnosed, nothing major. But a couple weekends ago, my friends wanted to go tubing. For those of you who don’t know what that is, during the spring and summer you sit in inflatable tubes on a river for several hours.
The whole experience was a humiliating. I’m 23 years old, I’ve only ever worn bikinis and board shorts in the water, but now I’m stuck wearing a full body suit looking like an extra in the movie Soul Surfer and a giant sun hat. I diligently wore sunscreen, stayed covered and cool, but it didn’t matter. I still pushed it. 5 hours on the water cost me 4 days of flair up pain and fatigue, including some new and fun additional issues I get to talk to my doctor about. I used to love going tubing, I used to love going outside and being in the sun. Growing up, my mom would joke I was a little lizard, because I’d lay outside just baking on the concrete, because the sun felt good.
I get these are first world problems, and so many others who have this illness experience so many worse problems than I do, and I’m grateful I don’t have it more severe. But this was the first time I’ve had that hard check of reality since being diagnosed that I can’t be the same person I was, and that things aren’t going to go back to the way they used to. And it sucks. It really really sucks.
I haven’t been able to vent to anyone, only 8 people in my life know I have this, because I’ve been so embarrassed and I’ve always been “fine” or “healthy”, so I needed the space to vent.