u/beaktheweak

I (23F) was severely ill between 2020 and 2025 with a condition I didn’t get properly diagnosed with or treated for until late 2024. I was 95% bed bound and had very minimal tolerance for any sort of stimulation, along with debilitating fatigue, frequent migraines and brain fog so severe I would forget how to talk.

edit: just want to thank everyone for how nice they’ve been!

on my phone/ipad/tv i have colour and brightness settings that make the devices easier on my eyes, as due to my disability i am very sensitive to visual stimulation.

i primarily play games on my switch 2 in handheld, but i can only play for specific games for short periods because the switch doesn’t have any accessibility settings. i can dock it to my TV, but i do better with smaller screens and i’m in bed most of the time.

basically looking for a small monitor that i can plug my switch into and play my games with my settings but can also be easily moved around. most of the ones ive found online don’t support HDMI from games consoles or don’t say whether they have accessibility settings

i played when it first came out in 2016 and not much since.

basically im disabled, ive been playing again since it came out for a few months. i’ve ‘walked’ (wheelchaired) around 5km in that time according to the game so i play SLOW, i also can’t get out much to spin stops and gyms and do raids etc. its fine, i just like collecting all the pokemon that appear within radius of where i live and it gives me something fun to do going to appointments

issue is i keep running out of balls because i’m catching more pokemon than im able to spin stops to get more balls. research tasks give them sometimes but it’s slow.

i just want to catch my cute creatures!!

EDIT: FC 663006567351

got 10g of a new strain that i’ve tried a handful of times and am really not getting on with.

i could just finish it because 10g isn’t a lot but it also feels counterproductive to be taking medication that makes me feel worse in most ways.

obviously i can’t resell it or give it to someone else but i don’t think i can return it, especially since i’ve tried it several times so the bag isn’t full. what do i do with it? cut my losses and move on?

TLDR: hole in tooth from not being able to brush my teeth, was fixed by a lovely accommodating dentist

I’ve been steadily improving over the last year, and am well enough now that I’m able to start addressing some of the things I was forced to neglect when I was severe. Pretty much anything hygiene related was either very limited or completely impossible for several years, and over time this has meant certain health implications from not looking after myself. There’s nothing I could have done differently, it’s not like I had much of a choice in how ill I was or what areas of my life were most affected.

Today I was faced with this really hard. I woke up and one of my teeth felt wrong, and upon inspection with my phone torch and camera, one of my back teeth looked rotten. It didn’t look that bad from the surface, but I knew for it to look the way it did on the outside, it wasn’t doing so great on the inside. Assumed it was a goner. I managed to see a dentist for the first time in years around eight months ago, where he did spot that I probably needed a filling in that tooth, but at that time there wasn’t any major damage so it wasn’t urgent. I put it off because even though I’m more moderate now, PEM is still a big threat and I’ve had to reintroduce life very slowly as to not undo the progress I’ve made.

I knew it was bad, I thought it would probably need to be extracted based on the fact that I could feel the hole. Growing up I was constantly told I had amazing teeth, and I was honestly really embarrassed about how bad it’d gotten. I know we know we can’t help these things but the general population, especially those working in healthcare areas that know nothing about ME, sometimes aren’t as understanding. I sucked it up and found a local dentist as I’m not registered with one after moving, and within two hours was sat in the chair having my tooth drilled at then filled in. Thankfully the damage was just shy of the nerve, he said if I waited any longer I’d have lost the tooth entirely.

That’s the only major damage to my teeth after 5 years being severe and brushing my teeth very irregularly, sometimes going a week or more between, which I’m surprised with. The dentist was lovely and quickly dissolved any feelings of shame I had. They were so accommodating of my wheelchair and needs, and turned the music off entirely (it was LOUD) when my mum told them it was bothering me. I needed to stop a fair few times for a break which they were fine with, I just raised my hand up when I needed to stop since I obviously couldn’t speak with them in my mouth. They also gave me a bite block as I was struggling to keep my mouth open and it really helped with the pain/fatigue of that and let me be able to relax a bit more, if you’re in a similar situation it’s worth asking for one if you struggle with jaw pain. They made no comments about how I should have been looking after myself better, which did happen last time I saw a dentist.

I just wanted to put this here for anyone who may have experienced similar, because I know this isn’t uncommon. This disease basically forces you to prioritise certain needs over others and over time this often affects your health in other areas. It’s okay, it’s normal, and sometimes this isn’t always understood but sometimes it IS. You feel like your fault but you’re not, and there are still good empathetic people in the world who understand this.

I honestly just feel very lucky to no longer be severe and be able to access care like this at all, since it would have been impossible even a year ago. I feel so hard for the people who are currently in dental distress and unable to do anything about it. Thankfully it was sorted right before it started causing me extreme pain, and I’m just hoping the PEM as a result isn’t too awful. I’ve blocked out the next several days to recover as even though I have been going out

you go through hell, and as if that’s not bad enough, the awful past continues to seep into the future.

i’m not there anymore, it’s been a year. i’m not in that house or that room or even that town now. no aspect of my life is the same, so why do i still feel like i’m there? i’ve woken up every night this week shaking and i never remember what i dreamt about. i go about my day and i’m just being hit by random jolts of adrenaline out of nowhere. it wants me to be in bed, because bed is safe. i don’t want to live in bed (trust me, i’ve done enough of that to last a lifetime)

it’s like i’m constantly waiting for something bad that is about to happen. it never does.

*i’m not officially diagnosed with PTSD because the issue is medical trauma and i’ll explode.

i’ve looked at the guide and it’s a bit confusing! i just want one of those carts we had as kids that had a bunch of games on it that you plug in and it just works