Showering you with a little perspective on invisible disabilities

How do you feel about showers? You look forward to them? Do they energize you, leave you feeling refreshed? Oh, there are folks like me in the world that have invisible diagnoses, that you can’t see, him basically. What we call them? Invisible. And those invisible diagnoses can really make what seems like an ordinary task seem incredibly daunting.
Some days, taking a shower can feel like going to the gym. It’s not refreshing at all, it’s work. And in my case, one of my conditions is something called polyneuropathy. My immune system is attacking the nerves in my arms and legs. So the further my further away from my trunk you get, the weaker things become, which means my hands and my feet are particularly bad. I drop things often, the strength from here to here is particularly weak. So handling utensils, holding cups, things that are ordinary for me can be treacherous.
Maybe I can hold the mug today, maybe it’s going to fall right out of my hand, maybe I can walk pretty well. Or maybe my ankles are gonna turn and I’m an increased fall risk. When I go into the shower, I not only have to deal with the polyneuropathy, I also need to deal with the sensory sensitivities that come along with the autism.
And some of the difficulties I have are changing temperature quickly. So it’s kind of chilly in the bathroom and I step into a shower and hot water is going to hit me. I’ve tried cold water, but that makes the polyneuropathy worse. And I’m a bigger fall risk when I get out of the shower. So there’s that the temperature changes. When the showerhead water hits me, it feels like little pinpricks on my skin when the water hits my skin, so it’s not comforting. It’s not calming, it’s dreadful.
So I get wet, I soak up, I wash off. And that’s it. Now, if there’s a day where I’m a little tired, had brain fog as well, I’ll forget whether I cleaned an area or not. And I may go back and do it two, three times. So it can be a confusing adventure as well because of the polyneuropathy. And the fact that the shower is pretty much a full-body exercise. It’s one of the biggest workouts I get. And I never know whether I’m going to have enough time to rest if it fatigues me, based on my schedule.
Now today, I was fortunate in that I was able to go shower, dry off, and just keep going. I need rest time, rock and roll. But that’s not typical. What’s typical is I need up to an hour to rest, to catch my breath, to let my brain fog settle. Let some of these sensations get back into my hands and feet, I’m carrying on with my day.
So the shower isn’t a transactional thing like it might be for most people. And it’s rarely refreshing. I love it on the times that it is because then I’m able to lay down and take a good nap. But I just never know how my nervous system is going to respond. So these are ordinary things for people that they don’t give a second thought to, could be a major thing that we need to prepare for, plan for, execute, and recover from. That’s kind of the nature of the beast here.
And in my case, I’m fortunate. And I’ve been strategic enough to create a business that allows me the flexibility of the downtime to recover from these various things. And in that regard, I’m grateful. I’m grateful that I can just rest. I’m grateful that I can sit in my recliner, you know, I don’t have to get into a car and go to an office when I feel weaker and more brain foggy.
So I just want to share that with you in case it gives a little perspective. It’s not something that I’m complaining about or feeling sorry for myself. It’s a fact. It’s a reality of my conditions that I need to learn how to navigate and adjust my worldview, my self-concept, the way I engage with the world because my body requires me to be adaptable, flexible.
So whatever life is giving you if you have decided it is too much, it’s something you can’t manage or overcome to an extent where you can still do the things you want to do. Nine times out of 10, the problem is with your conversation, the communication you have between your ears. Now, if you think that I don’t know what I’m talking about, I couldn’t possibly appreciate your situation. Prime me, there may be opportunities for you to explode out. Reach beyond those limitations and discover that you’re capable of so much more and have experiences you thought were beyond you.
So if you want to talk and give me a chance to find an opportunity where you otherwise see problems, just send me a message. We’ll have a little chat. Until then, I hope you have an amazing day and an amazing life. Thanks for being you.
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