I’m dealing with a mold-spore exposure in my home that’s only somewhat mitigated, and can’t reach a better state until the weather allows me to throw open all the windows for a week or so, to allow the super–low-tox coatings to dry and cure.
Honorary sibling & excellent friend Cougar came over to help with a related errand. I was singing my way through my tasks, which I don’t normally do, but apparently it’s sufficiently “on brand” that it fit right in with his expectations. I told him that I was going through a phase of illness where eating anything is treated by my body like a personal insult, and, in addition, the all-body pain and inflammation were through the roof. He said, “I never would have guessed. Your behavior doesn’t show it at all.”
Woo hoo! Yay me. We humans can have real personality distortion due to horrible pain, and when I can manage myself that well in the teeth of a flare, I take an inward bow and award myself a shiny gold star.
I got the Big Craptasms one by one: Ehlers-Danlos Syndrome (type not yet known), CRPS/RSD, dysautonomia, fibromyalgia, Hashimoto’s thyroiditis, mast cell/histamine activation problems, gastroparesis & sluggish gut. All of these require major lifestyle changes.
I could handle the rest, even the CRPS (given all the good neurotransmitter stabilizers we have these days.) It’s the worsening histamine stuff that’s really driving me crazy right now. I’m reacting to everything.
Reactions don’t stop with itching skin, itching eyes, pouring sinuses, and wheezing. Oh no. That would be too easy.
Reactions set off aaaaaall the other clowns in the circus.
So, here’s what that looks like in my case:
- My tissues are more brittle and unstable, so I have to be extra careful doing things (and I’m always doing things. Did I mention being mildly hyperactive?) That’s the EDS.
- The body pain of the CRPS I don’t want to focus on long enough to describe, but getting my skin sensitivity under control before bed is kind of a big deal.
- The fibromyalgia is like a big spiculated cloud of aggravation that my body wandered into and can’t find its way out of.
- The thyroiditis means I have to stay off cruciferous foods (the best winter veg, sob sob) or get back on the thyroid supplement/pituitary see-saw that I’ve struggled with before; meanwhile, the thyroid-driven struggle of having one day and one night in every 24 hours is taking up a lot of planning and will-power, especially at 4 or 5 am when I haven’t been able to go to sleep yet, but still have to get up in a few hours in the hope that my body will get the clue. With most sleep disruption issues, it’s important to fake it ’til you make it.
- Gastroparesis is tightly tied to mast cell reactivity for me. That’s also so loaded right now it’s best for me not to think about it, especially since it’s almost dinner time and I have to give my gut some work.
- It ties in with the fact that, if I don’t eat enough, my body creates more fat “to get me through the famine”, in that lumpy, painful, inflammatory pattern that just makes everything harder.
- Also, the mold fragments themselves create a reaction in my body that’s a whole bucket of nasty by itself: more brain fog, more indigestion, more inflammatory-patterned everything.
And I’m one of the lucky ones. This could be so much worse!
As I think about life generally and my life particularly, I think about travel — as essential to me as breathing is to many people. I don’t need as much of it (obviously) but now and then, it’s essential. I have loved ones, few of whom are near; I can no longer go visit them. There are beautiful sights I’d love to revisit, and more I’d love see for the first time. There are fascinating people I’ve not met yet — some of whom I’ve loved dearly for years.
Yeah… but no.
I can’t stay anywhere, because everyone everywhere uses things that either smell or out-gas or both; moreover, at this end of the reactivity bell-curve, what sets me off might be fine for another who’s similarly sensitive. It’s a total crap-shoot.
Plus, mold. Largely invisible, uniquely ubiquitous above the 37th parallel, usually harmless — but astonishingly bad for me!
If I’m going to go anywhere, I’ve got to customize and control the environment I sleep in, at the very least. Sleep is when the body does its housekeeping and cleanup; it’s as if all the doors and windows are thrown open and the sensitivity gets turned up to 11 — any bad stuff that goes in then, goes in much more and makes things worse. The regular cleanup gets interrupted. It all becomes more crisis-manage-y than housekeeping-y. As you can imagine, in hyper-reactive systems like the one I have, that’s a real mess.
This has been creeping up on me for awhile, and I’ve blithely ignored it because gee freaking whizz, isn’t there enough going on??
I just need a moment to process this.I had to give up a visit to friends this week, because my immune system crawled into the blender and hit “frapee”. (I’m nursing a charming case of stomatitis with both canker and cold sores; my lymph nodes are creating topography a bit like the bumpier parts of Death Valley; and I’m having all visitors stay fully masked with windows wide open, because I’ve got nothing to fight off further pathogens with.)
Because I gave up that trip, I get to sit here and think about what a non-delightful level of fragility I have to plan for as I go forward in my life.
So, on the one hand, this is great information and I clearly need to know it, in order to avoid making myself sicker.
On the other hand… Oh FFS, life! Really? — I mean, really?!?
When I’ve gotten the particle-board in the kitchen coated, I hope that will buy me a couple of years of being able to stay in my adorable little flat without further toxic exposures. I’m benefiting hugely from this stability, and the location can’t be beat. I love it and I’m grateful. With the semi-permanent fix in place, I can probably recover quite a lot of the ground I’ve lost — although of course there’s no guarantee, and the best-case scenario involves many months of recovery and being very careful about avoiding other toxic triggers for a couple of years, until the mast cell “bucket” can drain.
Thanks to the diligence and care of my 2 new helpers, this is an attainable goal. Pheee-yew!
Beyond that, I’ve got some thinking and learning to do. I may revisit this subject of controlling my environment while on the go, when I have anything useful to say.