Fine. I’ll do it this way.

This summer has been one of continuously not getting my way health wise. The heat and humidity when the good ole mid Atlantic summer started sent me crashing down like Icarus. Things were starting to turn the bend and then I caught a cold …

Autoinflammatory Disease + actually being sick = totally unhinged & haywire immune response.

Since with Autoinflammatory Disease the innate immune system is directly acting up and attacking my body any legitimate sign of invasion? Oh it’s game on for my innate immune system, starting with literally turning up the heat … I’ve been averaging a daily fever of

101 far too often the past few weeks.

I can’t do things the way I want to. Things like writing this post.

I usually need to be on my back with my head propped up a bit. My fingers have been super stiff with swollen joints on and off so my keyboard and I are also not friends at the moment. I’m stubborn about some things. Writing my posts on my computer is well one of them.

Even though I’m constantly writing often very long and detailed responses with links and everything on the Facebook groups app on my phone. Yeah, which is a much less friendly interface for writing long things.

So I’m stubborn and dumb. Right now I’m really trying to come to terms with that, since it is the only way my quality of life is going to improve.

I need to be willing to compromise with my body. Find ways to do the things that matter to me in a way my body can handle it whenever possible. I have to do that since so often these days it’s not possible.

I was writing in one of my Lupus groups about how I’m working on staying motivated with cleaning my room. I’m used to be able to be active for at least 30 minutes at a time fairly regularly. Now days out of the week I get maybe 15 minutes at a time. Like with writing I get stubborn. I want 30 minutes.

I want my entire room clean right now, like a few months ago I could reorganize and clean the whole thing in oh 90 minutes. Not a lot of hard labor to it, not a lot of space.

Right now that’s too much to ask my body. I need to settle for getting together small parts of my room every few hours at best. That’s what I’ve got.

But hey, look I wrote a coherent post on my phone. It was easy, took up a lot less energy than using my computer. That’s cool!

Also huge props to the Lupie’s who always kindly let me crash at their pad. The Systemic Autoinflammatory Disease world is very small. Our groups need to stay focused on research, symptom & disease identification, treatment navigation. I can’t get support for things like how to clean my room when I’ve got nada. So thank you to my Lupus cousins for being so understanding and accepting their zebra relative 🙂

Featured image: “Trapped” by Taylor Dawn Fortune1


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The Short Link for this page:

Drafting is occurring on Google Doc feedback welcomed!

Short Link:

Grassroots All Stakeholders Healthcare
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image source comics

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