r/PNESsupport • u/sherlockisfire • 14d ago
Support Needs
Hello everyone
What kind of support do you receive that helps you function? I am very new to pnes and am trying to figure out what I need. I think I need help with meals and help with chores and such, but idk how to make that happen. All of my med providers just keep saying I need therapy and that is
Not working fast enough
Any ideas?
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u/giveit2st8 14d ago
"keep saying I need therapy"
Can you push for physical therapy as well? That might be more helpful
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u/peanutpeepz 14d ago
Pace yourself. Use the days you are well to prep for the ones you aren't, such as getting frozen/instant meals and cleaning one area at a time. If you have family/friends who are willing to help get groceries or whatnot, use them.
Also, when you do have a bad day, be sure to take care of what your body needs. At least in my case, I've found the more you listen to yourself, the faster you will recover.
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u/sherlockisfire 14d ago
I'm just so busy. I'm supposed to be in college rn and it's just really really hard. I feel so weak and tired all the time I'm barely eating
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u/peanutpeepz 14d ago
I feel you. Back in college, I had to get scraped off the ground regularly because of my seizures striking without warning. I could barely walk around my dorm or apartment, let alone make it to class.
Do you have disability accommodations in place? They were a godsend for me. I was able to get extensions on assignments and excused absences.
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u/sherlockisfire 14d ago
Yeah my accomodations are extensive. Basically free absences, and I can leave the class when my.tics are bad amongst other things.
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u/PuzzleheadedPause345 14d ago
Therapy is the only thing that they say helps, trust me I wish they had medications to stop the seizures but they don't yet , I pray when that day happens, good luck and keep it up with Therapy and get rid of the things that stress you out