A Guide to Mobility Aids for CFS

[southwestforests]

TL;DR: If you have CFS, you will benefit from a mobility aid, now. Do not wait until you get worse. Get One Now.

Wish I could direct that to the number of people I see on Tumblr who, while having CFS, or not CFS but other things instead, post things like, "I have this mobility aid and I should be using it but ... but ... but ..."

And the younger the poster is, the more those "but" include things along the lines of, "But my peers might think me a lesser person & I can't be having that happen."

They would rather suffer current pain and permanent injury than lose some kind of purely arbitrary and imaginary ephemeral transitory social status.

Sad. Very sad.

Even sadder are the young people whose posts do not say bluntly but do definitely indirectly say, "I need a mobility aid but my parents refuse to get or allow it because their egos would tell them they are failures as both persons and parents."

 

[Emeline]

Wish I could direct that to the number of people I see on Tumblr who, while having CFS, or not CFS but other things instead, post things like, "I have this mobility aid and I should be using it but ... but ... but ..."

And the younger the poster is, the more those "but" include things along the lines of, "But my peers might think me a lesser person & I can't be having that happen."

They would rather suffer current pain and permanent injury than lose some kind of purely arbitrary and imaginary ephemeral transitory social status.

Sad. Very sad.

Even sadder are the young people whose posts do not say bluntly but do definitely indirectly say, "I need a mobility aid but my parents refuse to get or allow it because their egos would tell them they are failures as both persons and parents."

Yeah, I agree, it's really sad.

I empathize, I found it very difficult to use a rollator, especially. It got so much easier through use but it's hard to move through that feeling when you're already struggling. I also empathize with their parents-- it's sad and scary to have your child so sick!

It's frustrating too, because I truly believe that using mobility aids are a tool of treatment for CFS, where pacing will make or break your experience.

I believe the awareness of pacing and it's use has increased in the past decade, I hope this continues and allows the use of mobility aids to become more socially acceptable.

 

[southwestforests]

I truly believe that using mobility aids are a tool of treatment for CFS, where pacing will make or break your experience.

I believe the awareness of pacing and it's use has increased in the past decade, I hope this continues and allows the use of mobility aids to become more socially acceptable.

Good points.

My life experience and my attitude are impacted by having parents who were both midwestern farm kids, Dad was a Navy officer, Mom was a dietitian and in her 70s was finally discovered to be autistic,
All of which led them to have an attitude and a working practice of, "Okay, this is the thing, this is what needs to be done about it, now let's do it."

Of course since that's what I lived, it influenced me.
And my own health has been a bit messy from birth.
And I needed mobility aids in the early school years.
(then didn't need any again until after ME/CFS hit in fall 2005)
(and that on top of a 1994 spinal injury brought the new need)
And we got transferred by the Navy generally every 2nd year, so I got involved in, became attached to, precisely zero social groups of children and teens; why bother, I'll be leaving shortly after I learn who they are, anyway.
And being myself unknown autistic until in to adulthood, my mental and emotional focus was on the things which interested me, not on social nonsense.

So,
my personal attitude is, if a mobility aid is called for, then be wise and employ it.

But,
as I have seen throughout life, not every person or family has the same attitude mine does.

And, actually, I do get the general principle about not wanting to be seen as different from the other children and youths, I've had that feeling, that emotion,
and ultimately I went, "Oh well, I Already AM different, already am Not Like Them. So, eh, what's one more difference matter."


Yep, Pacing, it is VERY MUCH a thing and is documentably beneficial.