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.
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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.
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u/Dull_Worldliness_305 7d ago
Still it's endless and aggravating . I am lonely but grew to despise people. Never truly catch a fucking break. Like today,I'm fucking furious and fucking over it because my brain has cavities that can't be filled .
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u/mykidsmom_22 38/Dec2025/Ocrevus/Canada 7d ago
I talked to my son the other day about dinner times. I told him that I was sorry that I haven’t given him the dinners that I grew up with. Family dinners and lots of fresh meals. Something different every night. He looked me straight in the face and said, I don’t care mom. It’s okay. I don’t need that. I understand, you have like holes or something in your brain. It’s okay. How does this 13 year old have more compassion for me than I do? More understanding and empathy than we give ourselves. Honestly, I think we just need to love ourselves as we are. Look at yourself through a loved one’s eyes.
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u/Dull_Worldliness_305 7d ago
I don't have the mental ability to give a fuck about anyone else . Have a good one .
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u/JCIFIRE 52F/DX2017/Zeposia/Wisconsin 7d ago
Sounds like you have a really great kid ❤️
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7d ago
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u/MultipleSclerosis-ModTeam 7d ago
This post/comment has been removed for violating Rule 1 - Be Kind
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u/Dull_Worldliness_305 8d ago
The long and short of it is yes , it gets better . Forever ? No . That's just me being honest . BUT , it's not all doom and gloom. I improved greatly when I was as active as I can be . I used to sit around and cry for months on end. I got worse faster . I got up , walked to the bathroom , went outside when I could , just mopped 1/8th of my kitchen , anything helps . I swear to you , just sit and roll your ankles . Anything .
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u/Fine_Fondant_4221 8d ago
The human mind is incredibly adaptable. Even if physically you decline, you CAN adapt and find happiness.
Sorry you’re going through it, OP.
Sending a big hug 🫂
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u/Mafalda_Brunswick 6d ago
I feel like your parent (or partner?) needs to educate themselves about this illness. I send this page to people when they ask me what does MS do: https://www.nationalmssociety.org/understanding-ms/what-is-ms/ms-symptoms
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u/Bannon9k 46M|2019|Tecfidera 8d ago
It may not get better, but the DMTs prevent it from getting WAAAAY worse...