medical instruction REST

it won't let me post all of what I posted in the GoFundMe update so here's that link if you want to read the rest ( https://gofund.me/6d981312 )

I'm hanging in best I can. But I'm definitely burnt out between fighting for minimal supports and doing larger advocacy. Medically advised to take a break in August. Although it's a little more like medically demanded truthfully.

Hard to step back from advocacy what with staying alive on a gofundme. But current GoFundMe money does last until the first week of November so I'm going to follow medical orders as best I can. (I've been chewing on doing an op-ed about advocacy which makes it hard to step back from advocacy LOL. It doesn't have a place to be published yet so I know I shouldn't put too much brain power to it. but I so want to offload what I wish I knew 30 years ago so others could have it)

Needless to say It's going to be hard for me to be a good girl and not do advocacy in August. I've been pressurized and focused for so long. But I keep reminding myself for the first time in 18 months I'm not month to month survival. I have until the first week in november. And that's only thanks to recent gofundme donations. Thank you thank you!

Since I agreed to rest I keep having to remind myself I have almost 3 months. Still far closer to the line of catastrophic health failure than I would like which is why it's hard to step back from the advocacy even for a month. But one medical provider rebutted me by saying think of how much better you'll be able to communicate if you've had some proper rest. And the brain fog has been quite profound so that's probably true

But I am still having to fight for simple supports. There I don't get to rest. The mobility scooter is coming toward end of life. As is my back brace. Both are going to be quite the long battle. As per usual. The day back brace falling apart in particular has become a pain catastrophe. Apparently without it I am attempting to hold up my very hypermobile lower back with my intestines, According to my physio. Which explains what's been happening with my digestive system. Being hypermobile is weird. The body attempts to accommodate and manage in the strangest ways

I think the stress of all of that plus getting my apartment in order because of an imminent suite incursion cuz they're supposed to be changing out the lights plus still needing to get the bad air of the downstairs duct work venting into mine dealt with plus the mast cell activation getting progressively worse worse is still more than I have in me. All of those kinds of things have had and have a me in such a pressurized state that I'm in a bad mood. And that's not really like me. I'm finding everything annoying. And when I say bad mood I mean BAD MOOD

So feel free to remind me I'm supposed to be resting in August lol.

Severe me day is August 8th. And I have to say that having severe ME(although I'd prefer to call it stage 3 ME), which for me is being patchwork held sort of kind help together and alive on minimal supports knowing that the minute I stop them the catastrophic failure will precipitate the worst kind of suffering and then of course death. there's a brutality to that reality that I never get to look away from. It never gets less scary. And I think being so outside my energy envelope there is an element of progressively compromising my psychological and emotional wellness. I think that's why I'm feeling so bad tempered. I think it's the emotional equivalent of when I scream myself upright because the back pain is so bad. The crankiness is a different kind of distress klaxon wail

barbecue. And that's medically approved because it's good for me emotionally. So we'll see how I fare with that.

Here are some photos from some other bouquets I made this summer (for the podcast I'll do it as the icon)