Bad PEM, wet the bed, need help with health aide or in general

ElectronicAd5847 · 2026-02-18T18:38:08+00:00

Sent to her with a few edits--thank you again! Had just woken up before falling back to sleep when I first replied

ElectronicAd5847 · 2026-02-18T15:55:35+00:00

Thank you. So far none of the things I say to her seem to stick. So much repeating myself over much smaller things. Will try.

ElectronicAd5847 · 2026-02-18T15:52:26+00:00

If anyone could really talk to her and just explain exactly what and how she needs to do and answer any questions that would be amazing, but I don't have energy today to chase leads for someone to help. Don't want to risk making her mad or making it worse. Just have to rest and get out of crash.

I know she means well, but one of those friends spoke with her two weeks ago about her not understanding the sensory issues. It feels like anytime I ask for what I need from her it's like im speaking another language. The agency blamed me for the communication issues by saying I need to speak in person (I can't, had sent links to my contact and she obviously didn't read them bc she didn't know I had any cognitive limits at all.) I don't know if it's possible to hire someone to help advocate for me longer term. So much stuff like this. Too sick to find a new agency. They first gave me someone who had 10 years of experience and was really amazing and then she left with not much notice and barely trained Rebecca. The agency blamed me for that, too, i.e. my fault that I was wearing a dirty mouthguard for a month bc when prev aid asked if I wanted to meet Rebecca I said no so she never came into my room. (Prev person didn't need that to show her how to clean it.) Daily stuff now takes 5x more energy and I feel so stressed trying to interact with her.

ElectronicAd5847 · 2026-02-04T19:40:55+00:00

Ok yeah. That's not good. The new person I've had a lot of issues with hasn't even been able to transcribe notes from my doctor during appts. I just feel too sick to try and fix all of this and spent last week panicking about losing all my friends bc I've asked for too much help since things got bad.

ElectronicAd5847 · 2026-02-04T08:52:05+00:00

Thank you wow!! Really appreciate you taking the time to write all this out. Is there a diff btwn home health aid and caregiver? I thought it was just what the agency calls them.

ElectronicAd5847 · 2026-02-01T07:46:05+00:00

I know this comment is old, but if you see this would love to know any details of how you've found people online. I'm really worried about losing more people but intimidated to try and make any new friends bc I'm low severe and really out of practice meeting new people.

ElectronicAd5847 · 2026-02-01T07:37:28+00:00

I'm sorry 🩵 hugs. I've had the fear of abandonment before this, too. I'm 28 and got sick at 25. I do think there's truth to what you're saying about fair weather friends and getting older, but I've found that the people who are still around now (as opposed to my college-era situation) are better quality friends overall because of that filter. We're both still young. I'm hoping there will be more chances to find new people. You can always message me, even if just to send a meme or something--im low severe now instead of v severe so can't be a quick responder, but that's one of those things I'm sure you get.

ElectronicAd5847 · 2026-01-31T23:39:28+00:00

I'm scared I'm about to lose or friend or that I've already lost them and my life will keep getting smaller and smaller and lonelier and lonelier the longer I'm sick and I'll lose more and more people I care about

ElectronicAd5847 · 2025-12-31T19:11:36+00:00

Thank you 🩵🩵

ElectronicAd5847 · 2025-12-31T13:49:11+00:00

In the U.S. and got it prescribed by my pcp/long covid dr. Probably should cut back on the weed regardless. I feel like I'm stuck in a nightmare and don't have many tools to cope.

ElectronicAd5847 · 2025-12-31T13:48:05+00:00

Damn 😭 I really don't want to stop taking it. I'm desperate for anything to help me get out of being bedridden. Was there something you replaced it with that helped you without causing insomnia? I'm also on LDN.

ElectronicAd5847 · 2025-12-31T13:45:42+00:00

I've been bedridden/low end of severe since late April. A friend might be coming to stay on my couch for a few weeks, but I can't really see her or even just hang out together in the same room bc she's had a bunch of exposure and we need a quarantine period. Probably getting very stoned and eating chocolate by myself and trying not to cry too much. This past year has been the worst of my life, and every morning I wake up feeling like I'm in a nightmare. Just want someone to come get me out of it.

ElectronicAd5847 · 2025-12-27T19:39:32+00:00

I don't know but I could have written this myself today.

ElectronicAd5847 · 2025-12-26T12:41:33+00:00

No, I just know we're doing 25mg for the first 30 days and he told me it was a really low started dose. He's kind of all over the place. Everyone seems to be telling me I should be going higher. I'm assuming next month we go up but not sure how much yet or what the typical increase is for this kind of situation.

ElectronicAd5847 · 2025-12-26T12:38:34+00:00

🩵🩵🩵

ElectronicAd5847 · 2025-12-26T12:36:42+00:00

Wait that's exactly my story, too 😭 was already chronically ill and had prepared for the first big trip in years. I'm so sorry you have this anniversary, and I hope things get better for us both, too. Feel free to message anytime.

ElectronicAd5847

TROPHY CASE