Living in a Body I No Longer Trust
The daily calculations, frustrations, and quiet courage of life with fluctuating mobility.
Yesterday was a bad mobility day.
There was no obvious reason for it. I just woke up and instantly knew something was off. My legs felt wobbly, my body felt weak, and my shower stool suddenly became essential. I knew I was going to have “one of those days.”
I have these days frequently, and I’ve learned, usually the hard way, that any physical activity during them is going to be problematic. Sometimes it lasts a single day. Sometimes it lasts a week. There’s no pattern, no warning or no logic that I can discern.
Normally I’m sensible and stay indoors, keep housework to a minimum, and try not to poke the bear. But yesterday, for some reason, I felt rebellious.
So I dragged my tired, unsteady body around the house doing jobs I’d been putting off, and then, in a moment of absolute overconfidence, decided to take the dogs out for a walk.
If you are thinking that was ill-advised, you are absolutely correct.
The second I stepped outside, I realised it was a mistake. The walk didn’t last long. I made it the short distance home, collapsed into the nearest seat, and instantly wished I’d made a different choice.
When your own body becomes unpredictable
When you live with fluctuating mobility and very little energy, you quickly learn that you can no longer trust your body. I might feel fine, and I might even be fine, for short journeys. But the truth is, I never really know.
There have been countless times when I’ve suddenly become unsteady with no warning at all. Moments when even a walking stick wasn’t enough to keep me upright. That’s why I tend to default to my wheelchair: it’s the safest option.
But here’s the problem: when I use the wheelchair, I don’t get any exercise and my ever-expanding waistline would appreciate it if I did.
What follows is a daily calculation, which mobility aid should I use today?
It depends on the distance, the terrain, the weather, the likelihood of delays, the possibility of needing to stand, and whether my body might decide to abandon me halfway through the outing.
It’s exhausting.
Quite often, I end up staying home simply because the decision feels too overwhelming.
The grief of no longer trusting your own body
It’s a horrible feeling, realising you no longer trust the body you’ve lived in your entire life. I miss the days of my younger years when I took it for granted, when it simply did what I asked it to do and when I could push myself without worrying about the consequences.
I probably did some stupid things with it back then, and now, ironically, I have to over-analyse everything.
But even with my confidence shaken, even with the unpredictability and the frustration, I’m determined to enjoy the things I can do, even if they’re only a fraction of what I could before.
That’s why I sometimes push against my limits, rebel a bit, and attempt things I probably shouldn’t. There’s still a part of me that wants to feel normal — even if “normal” is long gone.
Hoping for a new baseline
I hope that one day I’ll find a baseline I can rely on. I also hope I’ll reach a place where I can trust my body again, even if it’s a different kind of trust than before.
Right now, though, it doesn’t feel like mine. It feels like somebody lent me a different body with faulty instructions.
If you’re living with this too, I’d genuinely love to hear from you.
How do you cope with the uncertainty?
Share your thoughts in the comments, it’s always good to hear from others walking the same uneven path. Let’s keep the conversation going.
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"It’s a horrible feeling, realising you no longer trust the body you’ve lived in your entire life. I miss the days of my younger years when I took it for granted, when it simply did what I asked it to do and when I could push myself without worrying about the consequences."
So true! With health unfortunately you only realize what you had when its gone.. Though my overall condition is certainly better than yours, but the grief is probably comparable. I try to appreciate what I still can do, not thinking about my old life. But of course much easier said than done..