jkap

CEO of posting

butch jewish dyke
part of @staff, cohost user #1
married to @kadybat

This user can say it
osu stats


🐘 mastodon
xoxo.zone/@jkap
🖼️ icon credit
twitter.com/osmoru
🐦 twitter
not anymore lol

this is in a lot of ways a vent post so i'm gonna drop it under a read more. i am just very frustrated and tired.


so the good news is i finally have a doctor appointment coming up which will hopefully get me Something, but at this point i feel pretty safe saying that it's likely CFS, given that i check literally every single box on the diagnostic criteria.

i've been bummed out all week about having to cancel something i was really looking forward to, the track night i was going to be driving in at Daytona, because with my whole Situation right now i don't feel like it would be safe for me to be in a track environment, even a low-stakes non-timed one. this sucks and is upsetting and disappointing and gives me one less thing to look forward to.

still doing what i can with work, which is hard as well. the long covid-esque parts of my Symptoms Salad (especially the respiratory + brain fog shit) are getting more annoying and more debilitating/limiting/whatever.

idk. it sucks and i'm not what sure what to do about it. despite becoming less capable, i still have the same responsibilities and very few things i can meaningfully take off my plate, which means things are mostly falling to the wayside. i ran three easy errands on thursday (cat food, pick up meds, get gas) and that was enough to leave me mostly bedridden yesterday. not good! i don't know how to adjust to new limitations! whoops!

i'll figure it out at some point, i will in time learn to live with this, but right now in the Introductory Period i'm having a really fucking bad time.


You must log in to comment.

in reply to @jkap's post:

My sympathies.

CFS and long-covid really fucking suck. My partner has had mild CFS for most of her life, but it got much much worse after covid, and it's been incredibly hard for her to adjust. I hope your doctor is able to help.

Oh my god I sympathize heavily. I haven't had COVID but I do have a weird health condition that may or may not be autoimmune, and I almost certainly have secondary CFS as a result. Checking off all the boxes, for sure!

Sadly, CFS is still widely misunderstood, and isn't even taught under most medical educations in the US, and when I brought it up with my doctor he was just kinda "I can't help you. Try [ research hospital ]". — CFS existed before COVID but COVID is the first disease to really get doctors to take CFS seriously! Hopefully your doctor is more well educated on the manner!

It'll be difficult, at first. The fatigue, the pain, the confusion. But you'll eventually pick up on what your boundaries and limits are. I like to say I have a few hour battery with a day long charge time when explaining it to other people; seems to be the easiest way to get things across.

Also, if mobility becomes an issue, try seeing a physician about a wheelchair! It changed my life, and I'm able to be a lot more upright because of mine. I don't get as tired when out and about because I'm able to stay seated and rest more, which means better load distribution of energy! Though I'm also not working, so I wish you luck on working that in to your energy management skills.

I hope you get answers, and I wish you luck in finding ways to manage your life with CFS. It's a struggle, but finding cheats, tricks, and tools to help you along is instrumental!

I got the CFS variety long covid and it sucks. Do not trigger the PEM if you can at all help it; find a pace you can do even on the bad days and gently increase from there if you can.

i don't really have advice for you, but i can say: i've been there! it sucks so bad. dealing with it, practically, & also dealing with the grief of your world getting smaller, possibly permanently. it's so hard.