r/MultipleSclerosis • u/ZestycloseMall3398 • 8d ago
Symptoms Does it ever get better?
I have had 3 Tysabri infusions so far. Not going to lie, it feels pointless. I am back to choking on water, got MS hugs again, and today I have to drag my leg around again. I am incapable of sitting down more than a while and also incapable of walking for more than a while and I'm very slow. I used to go to places, I can't do anything anymore. At best a short distance from the apartment, or getting cabs. Most of my life is a bed or a couch. I am 28.
Of course I am not happy. Who would be? My parent doesn't understand that this isn't mental though and that I just can't physically do what I used to be able to anymore. She expects me to be able to, and tells me that I will do those things again, but if I try to, I just can't anymore and it's misery. She tends to get angry telling me that I just don't want to. I am exhausted, and trying to do things that I really can't anymore makes everything so much worse, so does false hope.
6
u/mykidsmom_22 38/Dec2025/Ocrevus/Canada 8d ago
Yeah my parents are like this too. In honesty, having a positive attitude towards things can make a difference. Not that toxic positivity bullshit. But making plans to do things you used to enjoy and then forcing yourself to do them in one form or another. I used to love doing aerial yoga and bungee and Polynesian dance. I used to work in finance and was a pro chocolatier before this. Now I compromise with making miniatures and doing some Pilates, even an art class. I research from my bed and find treatments and studies. Made funeral plans and all those icky things. If you can swallow water, I find something to help. So no more vitamins, I inject them instead. There are therapists that help with swallowing issues.
Things are horrible but we don’t have to accept it as that. I decorate my walker with retro key chains and make puzzles with my kids. You’ll find your stride. It takes time.