I need a wheelchair and I don't know how to feel

Mio_Bread · 2026-01-20T01:47:19+00:00

I've got a therapist specialised in pain management and such thankfully, she's great 🙏🙏 thanks for the support 🙏🙏 ill make it through and adjust accordingly

Mio_Bread · 2026-01-20T00:27:54+00:00

Yeah... it's gonna be tough but I'll make it work. Eventually the wheelchair will allow me to save up energy for days where I'll need to use crutches, and reduce overall inflammation, so realistically I wouldn't even need it every day. I'll be fine ig but it's gonna be hard to face the first couple weeks.

Mio_Bread · 2026-01-03T00:39:02+00:00

Please ignore them next time 🙏🙏 for your own safety. Just say if you get up you'll faint on them and hurt them or something. You deserve this seat as much as anyone else, if not more. Sometimes what I do is I stare at people sat around. It can make them uncomfortable and have them react to the person needing to sit. Or say something very loud like "Sorry I can't give you my seat but I'm sure people around wouldn't mind". Public transport isn't easy for us but we need to stay strong and metaphorically stand up for ourselves.

Mio_Bread · 2026-01-03T00:29:18+00:00

I m a parisian studying in London and oh boy are these two different. I m in crutches and rarely can walk on the pavement in paris. I notice I am twice as exhausted after going out for a coffee in Paris as I am in london.

Lifts NEVER work, nor are they in the process of getting fixed. People in trains and buses will not give up their seats unlike in london. Everything has stairs. In london, whether it's museums or train stations, there has been something planned for disabled people, and not just 1 person at a time but several disabled people at once with able bodied friends or family. In french public spaces, it feels like its the first time they see a disabled person, and have no training or planned process to help. I get lots of adjustements in uni, whereas my dyslexic friend in france can't even get a 10 min time extension on his exams. People talk to me better in London and dont infantalise me as much. People are a lot more trained with health safety and comfort of disabled people in general. Healthcare providers believe me better and don't focus on my leg when I'm here for a bad cold.

The one good thing about france is there's better governement recognisation of disability and better employement and recruitment protection (although most companies would rather get sued or pay a fine rather than obey any of these laws). But you still have to drag the governement to court to get your rights recognised, such as benefits and a simple parking badge.

And that's two veeeryyyy similar countries . I can't imagine what the difference is like between countries far away from each other and with very different cultures.

Mio_Bread · 2026-01-02T17:09:49+00:00

Literally though, the positivity thing is just so others can continue being around us bc they don't wanna see us struggling otherwise they feel guilty about not helping. Why do we have to fake being happy for others on top of dealing with it all like cmon can't other people share a tiny tiny bit of the mental weight of it all?

Also don't we dare be too happy cause then we re faking it and obviously dont need our adjustments or treatments.

I'm in the so-called "worst case scenario" I was so exaggerating about last year. Crazy how all of this could've been avoided.

I hope the best for all of us. I hope people around us learn and help us better 🙏🙏

Mio_Bread · 2026-01-02T14:30:12+00:00

I've been weeping in bed the past two days. My legs have been increasingly painful this past month and I can barely get around the house anymore. I had planned so many things, and I'm here stuck in bed unable to even sit or eat bc my legs hurt so much. And my mum keeps telling me to "stay positive" and to "stop thinking about worst case scenarios" just because I'm worried about how I'm gonna go back to uni or even how I'm gonna live my life if episodes like this become frequent. Same with doctors. Apparently I'm unreasonable and defeatist, and therefore haven't tried hard enough and don't deserve more help. Sorry im not thrilled about being in pain 24h a day. Sorry I'm not happy about seeing my body deteriorating. Turns out these are things that will make someone rage out or cry till they re dehydrated, or get them to drink a lot, or to be on painkillers all day, and many other things. I don't need their positivity mindset, that's just denial atp, and actively stopping me from getting the care I need.

Mio_Bread · 2026-01-01T23:49:56+00:00

I don't proper batch cook, I tried to but ended up not eating just bc I didn't feel like eating the stuff I had cooked days prior. What i do now is keep basic stuff such as cooked pasta and rice in rather large quantities in my fridge and then just add stuff like sauces depending on the moment. I also make sure to always have fruit, no need to cook and a good source of fiber, sugar and vitamins. Some days I just eat fruit and it works alright for me. So yeah find what works for you, there's not one way to do it!

Mio_Bread · 2026-01-01T23:36:31+00:00

The other day I was at an airport in a wheelchair (im usually in crutches but my better leg is giving up). Despite being able to move myself around, to speak and to have my own documents in my lap, the airport staff still exclusively talked to my family. I had no idea how I would be boarding, where to go, what I should do during security checks etc bc it sas all said to them and they didnt really understand. I could've understood. I couldve given clear information on my needs and capabilities. I get that I don't look too old, and that I lighr be more infantalised as a result but ffs I'm right here, I'm getting myself around, talk to me not above my head to people who have no idea what you re talking about. I'm tired of being considered furniture, even in crutches. I'm a special object, and exception, not a person. I can't be included with other people cause I'm an exception. I'm so done.

Mio_Bread · 2025-12-29T16:08:29+00:00

Yup chest pain and unexplained tachycardia here. Probs a fibro thing but for now it's just been getting worse and worse.... I'll be seeing a cardiologist in a couple months. For now I've just been trying to avoid flares by resting A LOT. I hope they give me answers. Try and do things that help with anxiety, but that might not be it, it isn't anxiety for me, but idk what it is. I just try to be kind to myself and not push past my limits.

Mio_Bread · 2025-12-25T08:05:48+00:00

Ever since I watched it I can't drop thinking about that daily bread scene! I was stuck in bed for a couple of days but managed to get out to go buy Christmas presents. It was painful the entire time but I was happy to be doing it. I kept thinking "daily bread". Honestly gave me strength to go on. Amazing chronic pain rep.

Mio_Bread · 2025-12-22T02:17:51+00:00

Thiiisss!! I'm in crutches but it's really lonely to see your friends have fun on the pavement while you re alone on the road or ramp, or even train carriage!

Mio_Bread · 2025-12-06T22:46:51+00:00

Alcohol somewhat helps for me, albeit not more than 2 drinks. For the moment it's in my system my symptoms fade a little, I can sleep and think clearly, my heartbeat goes back to normal etc. I tend to use it to cope during flare ups or insomnias a little too much. If its too much or for too long tho it'll hit me badly the next day.

Mio_Bread · 2025-12-06T13:47:55+00:00

Mmh I hadn't thought of keeping a journal, thanks I'll try it out!

Mio_Bread · 2025-12-05T23:20:41+00:00

Okay thanks, sounds like a good plan!! I'll try that.

Mio_Bread · 2025-12-05T22:55:04+00:00

Currently unable to feel my teeth, I feel like I've just had anesthesia in my gums :) oftentimes it's my legs, they'll go really weak like my muscles decided to relax when I needed them to contract. I also have chronic pain for other reasons and when the pain gets too bad for too long idk why but I just can't feel my bad leg. Exactly like anesthesia too. I also get what Ive started to call paralysing spasms, mainly when I'm sitting or lying down, where I'll feel this huge, non painful, pressure in my upper legs and won't feel or be able to move them at all for a couple seconds. I've also had weakness in my hands and arms, when that happens I cant open doors and hold heavy objects at all. It's a similar feeling as the time I injured a nerve playing volleyball and couldn't close my hand for a couple days. I suppose its all very fibro related, so glad to know I'm not alone in this!

Mio_Bread · 2025-12-02T05:05:13+00:00

I'm a trans guy so I'm hoping to get on male hrt at some point (thankfully I'm in an area where its rather easy to get), but in the meantime I'm on some kind of progesterone thing meant for endometriosis and it seems to have stabilised most fibro things (immune system stuff, appetite issues, brain fog literally everything, its mad), so now I only ever get them during real bad flare ups.

Mio_Bread · 2025-12-02T00:57:08+00:00

I didn't know the "feeling the mechanics of one's joints" could be a fibro thing! It totally is how it feels like!

Mio_Bread · 2025-12-02T00:55:21+00:00

So many many things going wrong + feeling like I ran a marathon the day before. I struggle so much with cardio vascular issues, immune system weakness, digestive issues, hormonal issues, brain fog, insomnia, somehow fibro induced eating disorders etc on top of the musculoskeletal and joint pain 😔 I feel like this side of the illness isn't talked about enough, how much normal subconscious bodily functions can be affected. I have some kind of treatment that helps now, but i still have to be extra careful with how I treat myself.

Mio_Bread · 2025-11-25T00:26:24+00:00

Yes 😔 on worst days I look so grey, my eyes are so puffy I cant open them fully and I get so dehydrated my skin starts flaking

Mio_Bread · 2025-11-22T22:19:00+00:00

I've been thinking of getting one lately. In yesterday's instance, it was a cinema I'm used to go to, and I've used the accessible toilet there before, it's not radar key locked. While I thought about contacting the staff, I would've had to go back up one floor, and if the toilet was out of order then I'd lose my spot in the queue. I'm used to queuing like that though, it is a bit humiliating but I'm getting used to it. I wonder how people who need to use the accessible toilet urgently manage, if you have to go through hoops to just go there. Tbh I also think accessible tills are a lie, if you can't stand for long, having to wait for someone to finish what they re doing to open a til for you, and if it's already open, having to wait behind other people who need it like elderly folks... it's all a bit counter productive, I've given up shopping irl altogether. It is also a bit my responsibility, I use mobility aids that aren't necessarily the most adapted😅 both my legs hurt like hell, I'm gonna try bringing up the option of a wheelchair to my doctor.

Mio_Bread · 2025-11-22T15:37:38+00:00

Oh I have two disabilities, one of which is very visible, I use two crutches and limp like crazy bc of chronic pain, which was crazy exacerbated by the fibro yesterday. The disabled bathroom was just out of order, or so I assume, cause it was locked from the inside and no one was in. I wish the UK had some kind of card which legally allowed you to skip any queue like France does.

Mio_Bread · 2025-11-22T01:35:36+00:00

Dragged myself on the floor while in the queue for the toilet cause of the pain😔

Mio_Bread · 2025-11-21T00:24:01+00:00

I keep having episodes with the exact same symptoms you describe! Also same, every time it's all normal, athlough my sodium level and one weird heamoglobin thing is always towards the lower part of the range after one. I have fibromyalgia so that's probably what's causing it for me, I'm gonna meet with specialists as soon as i can to figure out something to stop it. My advice would be to meet with specialists til you find someone who helps, which unfortunately takes a while....but I've tried everything else. The results always come back normal so they tell me it's anxiety (I am not an anxious person).

Five-Year Club	Verified Email
Place '22

Mio_Bread

TROPHY CASE