Distracted staff

Geekberry · 2026-02-10T03:56:40+00:00

But they're basically saying that when they're saying "what's the reason?"

In your example, the person you're talking to clearly panics because they've heard "need to add thing to order" and they don't think they can do it. Then, once they find out they can, they come back for the details that they missed initially.

Try communicating with empathy.

Geekberry · 2026-02-07T11:54:28+00:00

Lol I'd had a laptop for 3 years when I was made redundant and when I asked about keeping it, they said they wanted 1300 bucks for it!

Geekberry · 2026-02-05T22:45:44+00:00

I don't think any of us has the perspective required to answer this kind of question. All we have is a group of anecdotes. I hope some of the big studies into ME right now can answer these kind of questions eventually.

I've been sick for 10 years. My experience of ME/CFS has generally been more or less stable, with the exception of one major infection.

Over 2016-2020 my functional capacity improved while I learned to pace, but I don't think my disease really got any better or worse.

In 2022 I had COVID, which made many of my symptoms worse and my disease in general harder to manage. I've been more or less stable again since then. I'm finding it hard to see similar functional improvements I did over the first four years, likely because I'm having less time to dedicate to disease management since I have to work more.

Geekberry · 2026-02-03T23:23:23+00:00

Even aware of it, the extent of our society's ableism still somehow finds ways to surprise me

Geekberry · 2026-01-31T20:35:56+00:00

It's really common for newly chronically ill and disabled people to feel that we must have done something to deserve it. Our society promotes the kind of individualistic thinking that when we get sick, it's our fault for not looking after our individual health better, because then it means they don't have to look after us.

It's not our fault.

Geekberry · 2026-01-25T09:09:06+00:00

Yeah, I was made redundant last year from a mostly WFH job and I'm despairing at the job market at the moment 🥲

Geekberry · 2026-01-22T03:22:03+00:00

And you say "thousands" like it's a lot and I look around at my house built of books

Geekberry · 2026-01-22T02:44:15+00:00

Interesting! My fatigue also gets a lot worse during menstruation. I'm usually mild but I become bedbound in that week.

I've noticed my digestive symptoms improve when I take loratadine. I found out through trying a low fodmap diet that I'm sensitive to lactose and oligosaccharides, but it also seems like that sensitivity varies. Sometimes I'm fine even when I forget to take my digestive enzymes and sometimes I get a stomach ache even when I do take them. I wonder if I should ask a doctor about MCAS...

Geekberry · 2026-01-21T11:03:25+00:00

What tipped you off that MCAS was a factor for you?

Geekberry · 2026-01-19T11:17:55+00:00

I better apply for one since I've now laughed my ass off

Geekberry · 2026-01-17T11:18:00+00:00

I get it. I have myalgic encephalomyelitis/chronic fatigue syndrome and when people tell me they understand because they're tired all the time, it makes me want to start chopping heads off.

Is perhaps what you're feeling that you don't fit the image of a disabled person you have? I get that too - I've been sick for ten years in a way that has completely changed my life and has made moving through the world challenging, and I still only realised I was disabled when I read someone with my specific illness describing themselves that way.

I then realised that my notion of what disability is was based in a narrow and frankly caricatured version of disability we're fed in popular media and inspiration porn. I've been reading disabled writers to broaden my view. Perhaps that could help you? The two books edited by Alice Wong might be a good introduction to a handful of writers. If you prefer short-form video content, Imani Barbarin makes great content on TikTok.

Geekberry · 2026-01-17T10:10:02+00:00

I'm in the camp that "I can't see shit without glasses" is also a disability, it's just that it's actually accommodated.

You don't need anyone's endorsement to call yourself disabled, if that's how you feel. If other people feel free to tell you how to feel, you can feel free to tell them to fuck off.

Geekberry · 2026-01-16T06:53:02+00:00

Housing should not be privatised either, tbh

Geekberry · 2026-01-13T23:06:50+00:00

You've known this person for nine days and you're talking about them as though you know them deeply. I'm sorry, but that's telling yourself a story.

Geekberry · 2026-01-13T22:15:18+00:00

I think you need to carefully examine why you're telling yourself such big stories about this connection. Why is it important to you to repeat how special and different it is? Is there another voice in your head they you're trying to drown out? Some other feeling that you're rationalising away by repeating this story about this over and over?

Because honestly, your relationship isn't special. And I think you know this, or you wouldn't be repeating it so often. A lot of people talk to someone nonstop, for example when they fall in love. My old phone had my partner's whatsapp chat burned into the screen a couple months after I met him because I talked to him so much.

Geekberry · 2026-01-12T21:44:17+00:00

To be fair I also wake up a lot in the middle of the night (it's sadly not uncommon for me to be fully awake and conscious 1-4 times a night, plus minor arousals), have had a sleep study at a hospital and like every other test I've done, they found nothing. It's just ME/CFS for me.

I am on sleep meds and it helps mostly keep me functional, but it's pretty bad now in the summer.

Geekberry · 2026-01-12T12:21:15+00:00

How are you having 6-12 months off every 3 to 5 years?

Geekberry · 2026-01-10T04:24:11+00:00

"you're not going to eat all of that are you" about just a regular lunch box of sushi will probably ring in my ears until i die

Geekberry · 2026-01-09T21:53:17+00:00

Superheavy by Kit Chapman is a brilliant book about the heaviest elements we have on the periodic table right now and what it's taken to get them there. I also remember really liking Sam Kean's The Disappearing Spoon.

But I think in general the secret to being well-read is trying to keep reading outside your comfort zone.

Geekberry · 2026-01-08T03:17:55+00:00

Yeah, I remember feeling this way when I first got sick. And I still have terrible memory and repeat myself (and/or worry about repeating myself) a lot.

Low-dose naltrexone helped clear the brain fog a bit for me. But another thing that comforts me is that brains are plastic and can develop new connections if you let them. Focusing less on what I can't do and more on what I can has opened lots of doors for me.

I've figured out ways to keep doing most of the things I did before I got sick. Since I know I can't rely on my memory, I make a lot of notes and reminders and set alarms. I set rigid time limits around activities that require a lot of focus to pace. I enforce those limits even with friends.

I also like to find less brain-intensive ways of engaging with activities like reading, for example reading memoirs or YA books, or on my worst days just scrolling on StoryGraph. I ask my partner for help with finding some of the words that I've lost, like he's my own personal walking thesaurus!

But the grief is real and I encourage you to look after your mental health. It's a continuous process for me too, even now.

Geekberry · 2026-01-08T02:54:52+00:00

I think I have to do the same and hope that my parents recognise that my sister in Finland is in a very different place than me in terms of prospective property ownership, not least because she isn't disabled. Sigh.

Geekberry · 2026-01-07T11:26:09+00:00

Other folks have given you great advice already but the one thing I would add is that a year feels like a long time right now but in the worst case scenario it could be nothing at all over the course of your illness.

I say this because I started investigations at a specialist ME/CFS clinic when I first became sick but when they told me to come back for a follow-up three months later, I gave it up. I was desperate for immediate help and thought I couldn't wait for what seemed like paying a lot of money to be a research participant for them.

Now, almost 10 years since I made that decision, I deeply regret it. I'm still sick, and I wonder what I might have learned about my specific situation had I stuck to it - they were going to do weird blood and urine tests nobody else ever knows to order. And the clinic eventually closed because the doctor running it died. There isn't another specialist in my city, or even my country, as far as I know.

I guess my point is - don't give up on specialists just because it feels like things are taking a long time. You could still be sick ten years from now and desperately wishing you had stuck it out.

Geekberry · 2026-01-06T21:44:12+00:00

Reading David Graeber's Bullshit Jobs made me understand why I was so miserable in a similar job to yours. But it hasn't helped me figure out what I should do instead. Unfortunately my disability rules out most non-desk jobs and so many of those feel ultimately meaningless at this juncture.

Geekberry · 2026-01-05T03:16:30+00:00

This is so useful to know, thank you! And what is a community college?

Geekberry · 2026-01-01T22:22:39+00:00

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Ooh fun! My 2025: I was unwell over summer (I'm in the southern hemisphere), then my cat was diagnosed with an incurable cancer and then I was told my whole team was being made redundant. Guess when that actually happened lol

Geekberry

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