It’s no secret among individuals with dysautonomia that sometimes we have trouble getting around. When your autonomic nervous system doesn’t function properly, it can make standing for a few minutes or walking a short distance seem like a few years or a thousand miles.

But believe it or not, convincing a dysautonomiac to actually use a mobility aid is among the greater challenges in life. Why is that?

We Don’t Look Sick

The vast majority of people who use wheelchairs aren’t actually paralyzed, you know. Most wheelchair users need assistance getting around safely for one reason or another, but they are capable of standing briefly or walking distances of varying length. No offense to the older folks out there, but I doubt many people will think too strangely of seeing you in a wheelchair.

Put someone in their 20s or 30s in a wheelchair and it’s a whole different situation. Unless we’re strapped to an oxygen tank or other visible medical device, we’re often sneered at as being lazy (especially in airports, for some reason) or faking.

We Don’t Want to Be Accused of Faking

People are idiots. You see the stories on the news all the time of someone’s car getting vandalized or people being verbally abused because the individual parked in a disabled spot (with a legitimate disability sticker) but they didn’t use a wheelchair. So how could they be disabled, right? These types of confrontational situations happen with astonishing frequency. It’s that kind of ignorance that makes those of us who could benefit from using a mobility aid actually afraid to do so.

Sometimes It’s Just Embarrassing

No matter what, you will be stared at if you use a mobility aid. Especially if you look young enough to not “need” one. One time, my husband was wheeling me through the hospital on my way to an appointment. Even there, in a hospital, I felt so conspicuous. I kept my eyes on the ground and slouched down slightly in the chair because I was terrified I would see someone I knew, since I worked there at the time. All I could think of as I saw hospital personnel breezing quickly by was, “That used to be me before I developed POTS. I used to hurry around without a second thought.” And although individuals in wheelchairs never really caught my eye in the hospital before because they were everywhere, that didn’t stop me from being embarrassed when it was my turn to need the wheelchair.

So I Bought A Mobility Aid

I purchased a wheelchair a year and a half ago. It made it significantly easier to get to medical appointments, as the hospital where I receive my care is nearly a mile from one end to the other. But let’s be honest: wheelchairs are cumbersome. It barely fits in the trunk of our car. Most places I would ever want to go where I would need to use it don’t accomodate wheelchairs very well. And unless walking a fairly long distance is involved, I’m at the point now where I don’t necessarily need a wheelchair.

Enter my new friend Red Roller!

Red Roller is a rollator, which is basically a walker with wheels and a seat. This particular rollator, made by Drive, has a steel frame but only weighs 18.6 lbs and folds up for easy transport.

Now for all intents and purposes, I am housebound. I go outside to get the mail, feed our stray cats Cheeto and Socks, and that’s it.

A few weeks ago, a notion dawned on me. I suddenly realized that my fear of going, well, pretty much anywhere revolves around the reality of there being a.) nothing to lean against, and b.) nowhere to sit if I suddenly find myself needing to. Coming across a woman in her early 30s sitting down in the middle of the aisle in the grocery store might make you raise your eyebrows, am I right? Plus, a store floor? Eew.

Having a rollator provides physical support by giving me something to lean slightly against as I’m pushing it. And as mentioned, if I suddenly feel the need to sit down, there’s a little seat for just that purpose. (And the rollator has brakes which can be locked into place so I won’t suddenly go careening down an incline if I sit down.)

Not Just for Rolling Around

I had a really rough POTS day a few days after Red Roller arrived. I could tell it was going to be a bad day as soon as I woke up. Fellow POTSies know what I mean. It was one of those days where even just sitting up in bed (such as to write a blog post) kept my heart rate constantly in the 90s.

But on this particular day, I had to take a shower. Not only that, I had to wash my hair. For the most part, I only wash my hair every other day now, even though I still shower daily. I do have dry shampoo that I use occasionally, but I just don’t like having dirty hair. Plus, I haven’t cut my hair in almost two years, so it’s longer than it’s ever been in my entire life (and somehow curlier? Thanks, Grandpa Curly!) That translates into a longer shower. Even the extra 3-5 minutes it takes to wash longer hair can be a nightmare when you have POTS. If only I didn’t actually like having long hair better than short hair…

Then it suddenly dawned on me. Why not after my shower, when I am brushing my hair, putting on face cream, etc., wheel Red Roller into the bathroom and use it as a chair? Genius! So I did. And it worked extremely well, even though my heart rate while sitting was still 100 as my body tried to recover from the shower. But it would have been far worse without sitting down.

So how are things working out with my new mobility aid aside from using it around the house? Stay tuned…😉

💛ribbonrx