Many people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” find that too much physical activity can make their condition worse. Sometimes permanently.
Pacing, resting, and using equipment like wheelchairs and scooters can be important tools in helping yourself. How do you know when the time has come?
Stories and ideas on this page from the wonderful members of #MEAction Living With ME Support Group. Artwork on this page by Elizabeth D’Angelo.
I feel like a fool asking this question. I have things I want to do with my son (like taking him to the zoo) but there is just no way I could walk that much. I feel like a wheelchair would greatly reduce my fatigue and allow me to be more present, but I’m not sure if I’m just giving into the disease. I’m afraid I’m not “disabled enough” for a doctor to say I need a power wheelchair. I’m embarrassed by the fact that I have to ask this question:
How do you know if you need a wheelchair?
After months of hoping I would feel good enough to leave the house, I knew I had to do something. I just bought an electric smart chair this week. I found it on Facebook and got an excellent price.
I was embarrassed and afraid I would embarrass my kids (ages: 18, 17, 16, 15, 12, & 11). The wheelchair didn’t bother my them. They thought it was cool and were excited that I could do more. I hate ME, and I hate what it has done to me, but I have to suck it up and not worry about what others think.
I love my electric wheelchair! I got a KD smart chair. The ability to be outside and moving has been really valuable for me. My connection with nature has always been healing, but I used to push myself too much.
Now I feel like I’m moving forward. Literally. I enjoy daily rides in the summer and, as much as I can, through winter. I took it on vacation recently and I was able to be out more than I would otherwise.
Since I started pacing and using a wheelchair, my mental state is better, I am able to soak up nature, and I’m starting to be able to take short (2-5 minute) walks.
In the beginning, I resisted. But with my symptoms, if I overdo it, I lose the ability to walk by myself, and I often look like I’m intoxicated because of my poor coordination. First I purchased a cane, then a walker, and eventually a wheelchair.
I have found that a wheelchair helps me and people no longer look at me as if I were drunk. A wheelchair is just a tool, and a useful one at that. I too am obese, but I don’t care what people think: if I need my wheelchair to help me get through any event, I use it.
If you are asking the question, you need one 🙂 It can be a great tool to help you avoid crashes and keep from worsening your condition. I’ve met lots of folks with ME who regret waiting too long to get one. I use a walker and a mobility scooter and I love them.
If you live in the US, you may also wish to check out: How to Get a Wheelchair or Scooter Through Insurance or How to Pay for a Wheelchair or Scooter Without Insurance.
If a wheelchair improves your quality of life, use one. I’ve used a wheelchair, a walker and walking poles at different times. I always carry a folding stick as I can’t walk very far now and it’s amazing how much farther I can go using it.
It’s so hard to gauge what is too much activity when you feel you can do it. You have to listen to your body. I found that if I overdid it, I’d become so exhausted that I couldn’t relax enough to sleep. By trial and error, I learned to do less than I thought I could do. Now I have less crashes.
I try to think of it like any other aid. We wear glasses if our ability to see is diminished or hearing aides if our ability to hear is not great.
For people with ME, not only is our ability to walk lessened, but the payback from walking too far will make us more ill. Doctors have many erroneous ideas about ME. The idea that a wheelchair is “giving in” or “de-conditioning” is one of these erroneous ideas.
I never realized how self-punishing (and, yes, ableist) I was until I resisted using a wheelchair.
I use it whenever I have to stand for more than ten minutes. I can walk too but it’s uncomfortable, makes me sicker, and means I have to go home as soon as I get to the place that I’m going.
When I stand up to go to the bathroom from my wheelchair, my friends will jokingly say, “It’s a miracle.” I feel like I’m helping to educate people that illnesses and mobility exist on a spectrum. If people can learn that a disabled person can need a wheelchair only some of the time, then perhaps we are a bit closer to accepting nuance and variation in illness.
If you have to wonder about a wheelchair, it means you can benefit from it. It takes some getting used too, but its absolutely worth it to get to spend a bit more time in the world with those you love. Rock that wheelchair at the zoo!!
This illness takes so much from us. Let’s do whatever we can to make our lives better. Let’s be ME wheelchair revolutionaries and use them unapologetically whenever the f##k we want or need.
Accepting that we need a wheelchair or mobility scooter is a big step in coming to terms with our disability. Once we take that step, it opens up our world a bit. We can start doing things, just in a different way then how we did when well.
I have an electric mobility scooter, which is perfect for days out and for days when I need to walk further than I know I can. It’s not great on a rough surface or up hills so I’ve often needed my husband to push too whilst we’ve been out.
I bought a second-hand manual wheelchair this week and have just been out in it for the first time. It was a whole new experience!! I didn’t like not being in charge of it, and felt my husband was pushing me too close to other people. The wheels are quite thin too so every bump and ridge was felt. It was much harder for my husband too as he had to push the whole time. A mobility scooter is definitely better.
Debbie Clark Seely
I always felt really guilty and ashamed of using an electric scooter at Walmart (back when I could still go there) but then after watching a video from The Frey Life, I realized that it is totally OK for me to chose to conserve my energy. I get Post Exertional Malaise after any kind of walking.
Part of my shame is because I am obese, and people make all kinds of assumptions about me being too fat to walk, but I am to the point now that I just don’t give a care. I plan to buy a wheelchair because I have had gout in both feet on several occasions. Having a wheelchair would be a huge blessing!
Buffie Rogers LaRocca
I think there is such a weird view of wheelchairs in America: If you can walk at all, you shouldn’t use one at all! I recently rented a wheelchair at both at an aquarium and a zoo, and had the best day with my family for the first time in years. I’m a fan of the part-time user!
This is one of my biggest regrets. If I could go back to my teens and twenties, I’d use a wheelchair without question. Back then, I was too worried about feeling and looking like an ill person (as if that’s a negative!), so I was stuck indoors instead of getting out.
I should have said: “A wheelchair will not make me more ill. It will help my health stay where it is. It will help brighten my mood as I love being out of doors so much.” However, I just couldn’t. I had no idea of how ill I would soon become, as I knew of no one else with severe ME.
Now I am severely bedbound. My electric wheelchair is in the spare room, barely used, as it was too late when I bought it. I know I should have been in a wheelchair every single time I left the house. That way, I could have *enjoyed* being out whilst conserving energy.
That said, I believe in recovery and as soon as I am able, my hubby can put the chair in the back of the car and off we’ll go, to any place at all! I will soak up every moment! 💛💛💛
Not sure if you have ME? Take a look: How Do I Know if I Have ME?
Facebook Group: Beyond the Ramp – Getting Out With ME
One way to tell if a wheelchair might help you is to practice a technique called “Pacing with a Heart Rate Monitor.” If walking causes your heart rate to go above your anaerobic threshold, this could be a sign that you are overexerting yourself by walking: How to Practice Pacing
While many people with other illness benefit from exercise, people with ME can actually be damaged by physical activity. Stay safe out there: What Should I Do When Someone Tells Me to Exercise or Be More Physically Active?
Facebook Group: Beyond the Ramp – Getting Out With ME
But wait! There’s more! A wheelchair can be a great tool for avoiding crashes and improving your quality of life. There are many other tools that can also help: How To Save Spoons
21 thoughts on “How Do I Know If I Need a Wheelchair?”
I’ve had my support coordinator say you don’t need one you are young and healthy and are able to walk. And that if I get one I’ll lose my independence amd detriate further but all the walking around makes
me get super nauseated and I feel like my whole body burns up.
I been having walking etc issues for a few yrs and it’s been getting worse since any type of activity that involves my hips legs and lower back make it worse to painkillers don’t help. I have an autistic teen who requires daily long walks for mood management and weight control etc. I can’t go with him when doing long walks even small walks are painful for me shopping is painful for me also. Drs still can’t find the cause to my pains and difficulties walking etc. I’m now at a point I can’t stand it anymore I want to be more available for my son be able to join him and dad for walks be able to enjoy shopping again without the need of constant breaks and pain from movement etc. Should I ask my dr if it’s time I use a wheelchair
my health has been in a steady decline in the last five or so years and i’d been wanting a wheelchair to use for conventions, flea markets, basically for days and events where i would walk so much i’d be in too much pain to enjoy it. i found a second hand wheelchair for a really good price and people who’ve only known me as “active” poked fun at me because they don’t understand the amount of pain i’m in most of the time.
reading this made me feel less insecure about my decision to start using a wheelchair and enjoying my life again
thank you for sharing this beautiful post 🏵️ 🌼💛
Ive got muscular dystrophy a wasting of the muscles ive been sorta ok till about 3 years ago but now I’m isolated in my house ‘long before covid 19 it’s so depressing not being able to go out into the sunshine ‘but now my saviour is coming in the form of a electric wheel chair that lifts me onto my feet ‘I can’t wait ive been house bound for 5 years now And my mental state is not good ‘this is my lifeline to a new life ‘it’s like a small miracle to me ‘
I wish I had used one, too. I honestly never even thought of it!!
I am not ashamed of using my wheelchair 🦽 It does make a difference.
I am so thankful that I have gotten to the place where my getting out whenever possible is more important to me than what other people think. I am the one who lives in this body and I know I am trying my best every day……….I use a quad cane, the para city bus and when walking much my son’s old stroller as my walker.
I bought a used one from a friend of mine, didn’t feel like fighting with insurance about whether they felt it was necessary & they probably wouldn’t have paid for it. Now I have it if I need it. I think of myself as an ambulatory wheelchair user. On good days I can walk short distances & for short durations, but on bad days that’s just not possible
This really helped me. I am trying out wheelchairs with help-motors at the moment. Hav been struggling for years to walk, stand etc and now struggling with the thought of using av weelchair, cause I can get up and walk too. Wow what would people think, like is she lazy, crazy… By reading what other users says I now know I have to just think about my needs. By the way, here in Norway we get them for free through OT, by the disabled center, but the selections are limited. I really liked the KD smart chair wich Cosmo have (you tube) and hope to find one like that. Easy to put in my car too. Thanks
Sorry response. Thanks for this great comment. 💕💕🌷
I am looking for info on different types of chairs that is from other people with similar conditions, not from websites of companies that sell chairs. Do you know of resources like this?
I like this article 🙂 http://www.whentaniatalks.com/powered-mobility-options/
My reply is very late, but I’m posting it in case it’s useful. When it comes to manual wheelchairs, I like this guide: https://kaberett.dreamwidth.org/456861.html
I really liked what you said about using a wheelchair when you need one to get around and keep living your life. My best friend has developed a chronic illness and she really misses being able to get around, so she’s considering renting or buying a wheelchair to help her get around. Thank you for the information about how a wheelchair can be a great tool to help you avoid crashes and worsening your condition.
I used to love walking my dogs, and sometimes we’d go up to 3k. However it’s been months since I could do these things and even going to the grocery store has been really taxing on my body. I get dizzy and start to wobble as if i’m going to fall over. I’ve never passed out but it has gotten close recently. I want to bring up the idea of a wheelchair to my parents but i’m afraid they won’t believe me or they’ll assume I want one because it’s “cool”. Anyone have any suggestions on how to get one or at least talk to my doctor about it without them making it a big deal?? (Mind you, I’m a minor)
Thank you for sharing this. I think you are smart and brave to be wanting to get steps to take the help you need. I very much hope your parents will support you. there are some great fb groups on this page. Perhaps you could post this question there and get feedback from others who have been in similar situations:
What this site does for our patient population is amazing.
Excellent info for those with ME/CFS.Thank you, for all the hard work everyone puts into this blog.
I struggled was the last to know. I struggled with mobility. I wanted a seated walker so badly. My doctor said no. Then I went to OT who said “You need one!”. So I simply got it with her help. Then some years later as things got worse, my quadriplegic friends, who would give anything to have my mobility, sat me down and said, “You need a wheelchair. You can barely walk and are in constant pain in meetings.” My blind friend upon hearing I was getting one said, “Thank goodness! This is what it sounds like when you walk.” Then proceeded to reproduce it. When your friends who are disabled tell you it’s time-well it’s time and I never looked back. What a revolution! Participating, enjoying the community, independence. It was so much better.
great story. thank you.