How HSD and its friends affect my daily life - Abridged
Something I've been mulling over the last few days is how there are so many ways that this condition has affected me that I either dismissed as "just a thing," or instinctively found ways around. I'm still realising more all the time, but these are some of the ways that I've found it affecting me:
Sleep
Wait… should we start with sleep or end with sleep? Doesn’t matter. Sleep is great. I love it. I do it all the time. Except that’s also kind of a problem, I suppose. I’m really just so exhausted all the time. Often I can’t sleep because of pain, which leads to even further exhaustion.
There are times when I’m lying down and it feels like my ribs are folding over each other, or like my leg is pulling away, or like my shoulders are slipping out.
Food
Well FIRST there’s the MCAS and all the foods that I need to be careful about consuming. Some things I can only have a little of, some I can’t have at all, for fear of causing a reaction that can range on any given day from “is it hayfever?” to “my entire body is itchy,” to “my intestines will evacuate with extreme judgement,” to “anaphylactoid.” It’s unpredictable, often painful, and honestly demoralising in a way that makes food dull.
Then there’s the actual prep itself. Cutting and washing food can make me a danger to myself. My lack of proprioception and my incredibly fragile skin have led to many a nipped hand. Not to mention the repeated actions leading to some painful experiences such as aching hands and even elbows. When my wrists flare up, it’s a struggle to open a bottle or jar or packet, let alone grip a knife safely.
As for cooking - standing for too long in general is bad enough. Joint pain creeps in until by the time I realise I need to do something about it, it’s too late to stop the longer term effects of it. Standing for too long aggravates my POTS, too.
And standing over a warm oven? Even worse. Much, much worse. I get shaky and sweaty and dizzy. The world gets tipsy and my breathing goes wonky. I used to think it was low blood sugar, and would be confused when I’d get a normal reading on testing.
Personal care
In a sentence - I haven’t actually had a HOT shower since 2011.
I mean, I shower, obviously. But I can’t have the water more than warm, usually no more than lukewarm. If I have it any warmer, I feel faint and weak to the point that I cannot lift my arms over my head, or stand.
Or there are the times that I’ve reached to wash my hair or shave a leg, only to feel a joint slip somewhat out of place.
Socialising
To go out for me takes a lot of planning, knowing I’ll be able to get around and get home, being able to prepare adequately.
And even then I’ve had to cancel on things far more often than I would like, because suddenly my body has decided that it does not want to cooperate. Because I’m in pain or so fatigued that I can barely think.
I hate that I can’t participate as well as I’d like to.
Moving around
Now here’s where I really get hit. I used to think that it was all my own fault, a personal failing, laziness or some other such thing.
Moving is such a huge part of every section of our lives. It’s at home and work and just out and about. We cannot avoid it.
For me, there is always a risk of injury whenever I am moving. Be it a rolled ankle (even on even ground), my hips or shoulders slipping out of place, my wrists getting inflamed and painful, my hands getting aching and stiff from typing or writing…
I can barely complete a quick supermarket shop without being an aching, slow, dragging ball of pain. It has been this way for many years, and I have always forced myself to simply suffer the consequences, to suck it up and deal with it. I finally have to admit that I am not coping. And I have not truly been coping for a long time.
Conclusion
I mean, there’s so much more than just this, but to cover everything would probably end up being an actual novel.