I’m really frustrated that Whitney D. wasn’t protected from getting Covid. ME patients stand to lose so much, and we’ve already lost so much. Especially him! I don’t know how it happened, but as a very hyper vigilant person, I think someone wasn’t vigilant enough. We just have to be so fucking vigilant, and his family has been disappointing in this regard— not masking at conferences and even a bar while overseas at a conference. It’s absolutely possible to control transmission within a household.

Lately I’ve been thinking of butter vs margarine in the 80s / 90s as a kind of analogy for covid. Margarine was always bad for us, but it was marketed as healthier. I had a good friend whose family stuck with butter and knew back then that margarine was unhealthy. This friend’s family always seemed smarter, more cultured, and more thoughtful than mine. Surely there were ways to know back then that margarine was actually worse for the body than butter, but there were also constant ads calling it “heart healthy” or whatever.

When I had mild ME, I’d be very annoyed at all of the things I could NOT do. Now with moderate-to-severe, I’m so happy any time I can do something! I was not good at processing the grief of becoming disabled until it was catastrophic. My main advice to mild folks is do the grief work you need to do, and then try to protect and appreciate everything you do still have.

It’s a weird spot to be in— having the “mild” version of the (arguably) worst disease. Mild ME was utterly devastating to me.

Ugh my physical exam for disability is next week. I have no idea how to navigate— what to do / not do. I’m thinking of printing out the Mayo Clinic thing on ME and maybe ME Action’s physician’s guide. But I feel like anything I try could backfire. I also really, really want to wear a pretty intense P-100 mask with face shield, although I have an Envo mask. I’m worried about getting covid via eyes & I want to protect my baseline. I’m very severe on the new severity scale.

You guys the ableds are upset that air travel doesn’t run smoothly at Christmas in the midst of an uncontrolled pandemic, and I’m having a big old schadenfreude belly laugh about it. They really seem surprised? And confused? “Everything else in the world is super duper, why is my flight delayed? The only possible explanation is that my airline is doing a bad job, and therefore the solution is to ask for a manager, not wonder if something bigger is at play.”

I watched the whole season one of Emily in Paris in a few days. It’s just perfectly hollow, much more than it seemed at first. I need a lot of light, fluffy shows to sleep to. But I need to watch them first to know the basic story and if there are any parts to skip. This is just nonstop surface level beauty, ease, and identical hot brown haired French men.

The best thing about getting some help and Christmas gifts from my family on this first Xmas of having much worse #MECFS and new #LongCovid is being reminded how very much work it was for them, and told that I didn’t show adequate or timely appreciation. If you’re going to need help from your family, be sure they are emotionally immature enough that they’ll find a way to pair help with burden. Merry fucking Christmas.

If you’re attending conferences etc (all super spreader events at the moment), how do you deal with the extremely likely possibility that you have killed or disabled someone? Was it worth it? Did you get an autograph? Some fun photos? How nice for you. And will you expect empathy, care, and public health precautions when long covid comes for YOU? Because I am a messenger from the future. You will scream into the void as our eugenicist country parties on. You don’t care now. Few will care when it comes for you.