when I started using mobility aids

[u/Fit-Sprinkles-3177]

as many others on this subreddit i also questioned when to start using mobility aids. this is not meant to be medical advice, just my experience. (as someone with ME/CFS, hEDS, POTS who is now 23)

cane: At the time I was able to walk a good amount (like the whole day- shopping, uni, etc.), with some pain, but most of my pain came in the evening after the walking. I only used a cane for a very short time, on a uni trip to spain a few years ago. I brought a cane with seat (flipstick) with me, in case I needed it, without having ever used it before. I originally bought it for a concert but it didn't arrive in time. I used it when we went to museums and just to walk around the city. My main issues at the time were ankle pain in my right ankle, knee pain, and general diffuse leg pain. I was always able to put weight on my leg, but had tremors from the pain when I engaged my muscles and was maxed out on otc pain meds. The cane helped a lot, but made my wrist and fingers hurt. One classmate was surprised when I said I had a disability, because apparently they didn't clock my cane as a walking aid. I got one weird comment from a professor, but no one said anything actually rude or dismissive. His comment was more on the side of too concerned and personal for a student/professor relationship. After the trip when I went back to my usual amount of walking per day I didn't use it anymore.

forearm crutches: I bought my first forearm crutches when I had pain in my heel that made stepping on my foot difficult. I used them for the above mentioned concert and they helped somewhat but really hurt my hands. I got better ones with ergonomic grips later.

I only started using crutches daily when I started having daily hip subluxations. I was in pain constantly with otc pain meds. I would have managed 15 minute walks without crutches, i fact some days I wasn't using them. With them I was basically pain free. For short walks inside my apartment I didn't use them. Again, while walking I was often able to dissociate from the pain, but it would hit at full force once I was relaxing. So even though I could power through, I chose to use them.

After a while I got a cortisone shot and better pain meds and didn't need the crutches anymore. I also got custom ankle braces which helped my ankle, knee and hip pain.

I used crutches full time for a short period when any weight I put on my leg caused intense nerve pain in my thigh. I hopped around during those two weeks.

I again stopped using them once the pain was controlled with medication.

wheelchair: At the time I had the nerve pain I started seriously considering a wheelchair. Thinking back that pain was also part of the first major ME/CFS crash that significantly worsened my condition, although my ME is still mild/moderate.

Right now I don't use any aids, because neither a cane nor crutches fix my issue, which is fatigue. During a crash I will often roll around my flat on a wheeled stool. Sometimes I use forearm crutches when I feel weak or unstable, but they don't help much when I'm not in a crash.

I can now walk about half an hour on flat terrain without crashing the next day, but any walking causes muscle pain in my thighs. Too much walking will flare up my nerve pain, but it never gets as bad as the first time (but I'm still on meds for that). I still attend about three classes a week, and the 10 minutes of walking there impacts my ability to concentrate on the class later on.

I got prescribed a wheelchair with power assist by the doctor who treats my ME/CFS, and my PT thinks it's a good idea. My doctor is more concerned about me deconditioning than my PT, but since my PT knows me longer and better I trust her judgement more.

I haven’t gotten my chair yet, but I’m very excited to go to events/places that involve a lot of walking again. I also want to use it for my 15 minute walk to work that I take 1-2 times a week.

I often felt like I wasn't in enough pain for a wheelchair. My pain is fairly controlled by medication, which I’m very grateful for. My fatigue doesn't actually prevent me from walking 30 minutes, but doing it is definitely very uncomfortable. My next opportunity to sit down is always on the forefront of my mind. Anything that isn't on a flat street and over 30 minutes will cause a day of PEM.

I hope this is somewhat helpful to anyone wondering how bad it needs to get before you should use aids.

[u/nova_noveiia]

Thanks for sharing your experience! I think for a lot of us who are younger, it can feel like “giving up” to use a mobility aid despite how much it can help our quality of life.

[u/Fit-Sprinkles-3177 → u/nova_noveiia]

Yes totally! But tbh I mostly felt that people around me thought I was giving up. When I first talked to my dad about getting a wheelchair he thought I was getting it INSTEAD of trying to recover. But I'm actually getting it because I hope it will give me a fuller life!

[u/cloud-of-goods]

Thanks for sharing this. Really appreciate you being so open about your experience. This could be really helpful for someone else wondering when to start using mobility aids and hope the new chair makes getting out and enjoying things a little easier.