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CFS/ME and College + Choosing a Wheelchair?

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Chronic Fatigue Syndrome
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Posted 1/24/2017 5:02 PM (GMT 0)
Hello!! This is my first time on a forum for this and I have 2 topics in question as titled. I guess I'll start with a bit of an introduction? I'm almost 18, and my struggle with CFS/ME started in the beginning of my junior year of high school (so i was about 16). After 2 seizures, loss of most of my abilities and quality of life, and 13 months, I finally received my diagnosis. My condition has IMPROVED with near-constant rest and listening to my body's cues to stop, but the progress is tentative and easily undone. I almost had to drop out of high school but have made it through with quite a few absences...but regardless, I plan to attend college in the fall. With that, I have a few concerns.

Literally everyone around me says I can't do it. I can't go to college, I can't live on my own in an apartment, I can't go to vet school, I can't be a vet...I should just give up now and not even go. Well, I disagree! At the very least, I'm gonna give it the "good old college try." That said, is there anyone on here going through this or with any experience with chronic illness in college? As it is, since I can't walk far on a good day and at all on a bad day, I will be getting a wheelchair to assist with my mobility and pain management so fatigue or pain don't keep me from going to class.

That leads me into my next topic: choosing a wheelchair. I'm 5'2" and of average size/on the slimmer side. I'm going to try a 16" and an 18" and see which one fits better. I have moderate-severe pain ranging from my hips to my feet just about every day and a TON of inflammation and nerve problems in my legs and feet. Should I get fixed footrests or elevating legrests?? If anyone on here uses a wheelchair, what kind/model do you use and would you recommend it? Also, does insurance typically cover that sort of thing if a doctor prescribes it?

tl;dr

- anyone have experience with chronic illness and college? any tips?
- anyone use a wheelchair for ME? what's it like?
- should I get fixed foot rests or elevating leg rests on the wheelchair if i have a lot of pain/inflammation/nerve issues?
- wheelchair model recommendations?

Thank you so much and I'm looking forward to no longer feeling so alone with my illness!

- Lauren
Posted 2/3/2017 12:05 AM (GMT 0)
Hi Lauren --

While I am well beyond college age, I certainly empathize with your challenges! Your fortitude is inspiring, and I wish you well! However, I also urge you not to accept your limitations, or feel somehow that you are destined for a wheelchair.

If, in fact, you are diagnosed with ME/CFIDS, please consider low-dose naltrexone therapy. In my case, it has been a game-changer, and I have been taking it since August of 2013.

Best wishes!

Bruce
Posted 3/18/2017 4:24 AM (GMT 0)
Hi Lauren!

I created an account just so I could respond. I hope it's not too late. I agree with the above poster about low-dose naltrexone. I see Dr. Vera Nunez in Miami (part of Dr. Klimas' clinic at Nova Southeastern). She's an expert in CFS--I see her once a year, traveling from Seattle to Miami. It's worth the trip!

I don't know what to tell you about the wheelchair, bc I'm researching that myself. I'd say go with your gut. If you need it to get around, you need it.

As far as college goes--I can help you there. I just finished my PhD and masters, both while struggling with CFS/ME, fibromyalgia, hashimoto's, autonomic dysfunction, OI/POTS, and multiple immune deficiencies. You need to contact the disability office at your school and get accommodations for your illness. I'm not sure if you experience any cognitive dysfunction from your CFS (I did quite a bit), but most schools offer note takers, exam modifications (extra time, exams in empty rooms so you can focus, etc), and other reasonable accommodations. You just have to ask. Don't be embarrassed or ashamed. It's not your fault.
Also, talk to your professors if you're having trouble, they're usually very understanding. If they aren't, go to their department head. If you have to, you can go to the dean.
Don't overdo it. Don't join too many organizations and clubs, even if you think they'll help you. If you know people that will be attending your school, ask for help. It would be best if you had a roommate. You need someone to check up on you, someone who can help you on a bad day.

I'm not sure if this site has private messaging, but if you'd like to talk some more, send me a message (if they have that) or respond here and I'll give you my email or skype username.

I hope you're feeling better!

Amanda
Posted 3/26/2017 5:20 AM (GMT 0)
Yes most insurance will cover wheelchairs. And for the most part, if your doctor orders it, then the company that will supply the chair, custom fits it for your needs/body/comfort. Someone literally takes your measurements, asks you questions, has you sit in a few different models etc.
Posted 4/30/2017 4:31 AM (GMT 0)
Hey lgibson2017 - just checking how you've been doing? I only just read your post now, but I'm starting college in June. I also am healing from POTS among other things and am wondering if I'm going to end up using a wheelchair just to help me make it through
Posted 9/30/2017 6:01 AM (GMT 0)
Lauren,

I know that this month after you posted and I joined just to make a reply to your post. I hope you took the plunge and went to college. I am a college student at the young age of 37 and I use a wheelchair. I am majoring in accounting because you can do that from home or start your own business. I have battled ME/CFS since I was 16 years old. Wish I could tell you that life gets better but my ME/CFS is of the progressive variety and been just been declining over the years. I have tried everything and trying still. Anyway enough about things you already know.

I kick myself for not getting a wheelchair sooner. I have purchased an electric wheelchair back in March because I don't have the energy to be pushing myself around campus or the grocery store. (though it is handy to push your laundry to the washer). I purchased an EZCruiser Lite the 12inch wheels and yes go for the bigger wheels so you can cross grass areas and it doesn't work well in mushy gravel. It is pricey at $2,700 and the company doesn't accept insurance. There is another one on the market called KDSmart chair that I know couple other CFSer's use that one. Definitely, test drive and sit in your wheelchair before you get it. I didn't and I ended up having to buy an expensive replacement cushion and back support.Mine had a 20-minute cushion. After 20 minutes I am itching to get out. I do get out my chair when I get to class because I sit higher than every else and it feels awkward so I get out and sit in a regular chair. Don't let the insurance talk you into a scooter because there is no way you can get down a crowded hallway or an elevator with it. I am 5'6" the fix leg rest works for me but because I naturally constantly re-adjust position while sitting. My legs are always falling asleep.

I picked this wheelchair for it only being 65lbs with the battery and folds like a stroller and fits in my car truck fairly easy. On bad days it can be on the heavy side but I leave it in my car so I don't have to load it and unload when I get home or leave.( My house's doorways are too narrow to bring it inside) I commute an hour to school so it been a strain and become too much just recently. I would live on campus if you can because then you have assistance with your meal prep by eating at the cafeteria and when you have large breaks between classes you can go back to your dorm.

You need to do what you think you can't-do.(#thefreylife) Do it for yourself and nobody else. People are always telling me to just stay home but I can't stand I get cabin fever so badly and I start getting depressed. Take Buddhabelly advise on all the accommodations for school no matter if you think you don't need.

Only other ME/CFS patients really understand the difficulties but you do it. I am in my 21st year of college and I have only 5 classes to earn my BS in Business Administration. I have had a family and been a single mom and battle ME/CFS so I finishing just to prove all the naysayers wrong and more proud of myself for sticking with and not giving up.

Sarah
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