Riding the Roller Coaster of Fluctuating Disability

[Dolphin]

[I don't know what forum this should go in.]

Disability

Riding the Roller Coaster of Fluctuating Disability

EmeraldMaz

Last updated: August 29, 2023

Start: When people think about disability or chronic illness, they tend to do so in a very black and white sort of way: Either you are completely disabled, or you are not — this is your permanent status, and your disability (or lack thereof) will affect you the same way today as it will tomorrow.

Were it only that simple.

Continues at: https://themighty.com/topic/disability/roller-coaster-of-fluctuating-disability/

Extract:

There are days I will be struggling to get about with a pair of gutter crutches, and a few days later I’ll be managing with one, or using only a cane. It’s assumed by those who have little experience of chronic illness or disability that I must be getting “better,” therefore I must be able to do more, and I will continue to get better.

So what happens when, the next day, you’re back to using both crutches, or a wheelchair?

Do they understand that the day before had simply been a good day? Do they know that because of that good day, you probably overdid it by taking on more and are now suffering the consequences? Or will you be met with sideways looks and, “I thought you were getting better?”

 

[DokaGirl]

Excellent description. There is a lot packed into this very concentrated article.

I'd like to hand this out to people.

Society has such a narrow understanding of disability. Yes! People see it as permanent. And yes, they think you should accept disability, or at least be cheerful about it, or life in general, but strive to get better. So which is it? Able bodied people see disability as permanent, or reparable? They see it as both!

They also think improvement is linear: "Up, up, and away". Yay, now you're cured! Just work at it, you'll get there.

Recently, I said to my husband, I can't keep my ME between the ditches. I'm always figuratively running towards that moving target. The one where symptoms are more quiescent. It's like that saying "If you hold your face the right way", such and such you want will happen.

"Good days" are tough in that I can't hang onto them, and recreate them. They don't come in long strings of time.

And, as the writer of this article says, on good days, I do too much. Which leads others to think I'm well, or at least recovering. People don't see me when I crash. They don't see how the effort to have a normal day, or a normal few hours is so taxing, that I end up worse than when I set out to "be normal" for a while.