Friends and Family,

Writing with an update from me and with a fundraiser for myself, as I am out of money and still unable to work.

With everything going on, I'm going to try to keep this brief, but I know a lot about my health situation now and would like to share. Especially as I am asking for a lot of money, and also, I think it would help me for people to understand where I'm at. Which is to say, I'm still pretty limited, and always feeling some degree of ill.

I think what happened to me is structural, biological, environmental, and genetic. I got covid and then some "manageable" chronic diseases like MCAS, POTS, and Crohn's, but was also exposed to mold and had a neck injury in the same time frame. The inflammation of all of this went on so long, it likely triggered ME/CFS.

Since having my first flare or "crash" with ME/CFS in the spring of 2022, I live in a loop of toxicity. My blood feels poisoned, I'm nauseous, prone to headaches, and live with constant, never abating, tinnitus, that ratchets way up in volume when I'm over exerting my energy. I deal with pain most days.

Whether I read, think, talk, walk, drive, do laundry, or floss - my energy feels like it's coming in a completely different way now, and it's very limited. After spending this summer and fall tracking my crashes and the activity that lead to them, my estimate now, is that I have about 3-9 hours outside of the house for activity per week. At home I can putt around, but that will make me crash too if I don't carefully pace my activity.

When I get to the limit of my energy, if I don't stop what I'm doing, the crescendo of the crash is so intense and toxic, there's nothing to do but ride it out and hope it doesn't leave me feeling sicker then when it started. Which is ultimately what I think I risk with over-exerting or crashing. When the crash ends it feels like I've been hit by a truck, so the nickname feels very accurate, and it takes a while to fully exit out of the feeling of being in a crash. Sometimes a day or sometimes a week or two.

There are ways to get both better and worse with ME/CFS and I'm trying to keep down the path of what might help me, without hitting this toxic threshold that feels so extreme. I spend a lot of time convincing myself that I will soon be in a much better state. In part because some treatments have helped a lot, but I still hit that crash point hard at 3-9 hours. And to be clear, if I attempted 9 hours in a single day, I'd crash hard around 5-6. I couldn't be out and about that long without crashing. Which is not enough energy to work and the thing I need to practice at this moment is acceptance.

I will be applying for disability again which was a mess for me in 2022 in a much sicker state. I think my case for it is ok, but they'll likely make me do the multiple applications process and possibly access a lawyer, like with most everyone who applies. In the meantime, I am trying to raise money to take me as far into this year as I can.

Thanks for reading and donating if you do. The last thing I'll say, is that I haven't been an inspiring sick person at all. I've been angry and deeply resentful. I'm really sorry if you've experienced it. I am earnestly working on becoming a different person. Not to be dramatic, but I have to accept a lot about my life. And about the world I'm living in. I want to be a person of sincerity, with soft edges. I think what we're experiencing demands it and I'm pretty sure a hot lava flow of rage isn't helping my toxic state. As annoying as I, personally, have found that.

With much love and gratitude,

Annette

PS: There's also a documentary about ME/CFS, called Unrest Film, you can find free on YouTube. It's a tiny bit outdated, the person who directed it has ME/CFS and managed a huge recovery via spinal surgery (not a path for me at this point) she is currently working on a follow-up. I also have the DVD you can borrow!

PPS: This isn't entirely without silver linings. My "celiac" was likely a misdiagnosis of MCAS, which I've had symptoms of for years. Having treated that and Crohn's, I have been enjoying what I'm calling The Gluten Tour. I'm also finding the time to write poetry and learning to write songs and it's helping with the rage.

PPPS: The type of mold I was exposed to is most commonly found in farm animal feed, I think I got it from DIY building material, but it has felt like peak absurdity. Like, of course I would be exposed to mold without a single study in humans. Of course!