u/obliviousfoxy

I have spoken to WCS who changed my appointment to more urgent as my wheelchair cushion is causing pain in my butt and sweating after over half an hour. even with shifting. It’s a comfort company curve (ironic name)

Have you guys had any better luck with cushions?

am I going crazy here? I called adult social care this morning, because I require a needs assessment because to be fair I’m pretty sure I need to have some sort of care as I have Severe ME and EDS and live alone with no family around, now the thing is, when I contacted them, the handler said to me that carers do not usually help you do household chores or tasks? They said you would have to pay for that yourself, ie cleaning, changing bedding, taking out rubbish etc? I have no idea what they mean as I know from personal experience that carers do household tasks as I used to be a domiciliary care assistant when I was younger… is this a new thing? Are the council correct?

I’m referring to adult social care and wondering what they can do.

I had symptoms for about five years now, after developing chronic fatigue syndrome that was likely exacerbated by Ehlers-Danlos syndrome post COVID.

At first it was basically just like an extreme burning feeling, like worse than you could ever imagine.

But usually with medication and avoiding like unhealthy food completely (I cut everything out), it was completely fine

fast forward to earlier this year, I developed suddenly acid reflux again, even while I am still on esomeprazole, which I’ve had for 5 years, and I had worse issues with regurgitation daily. Before I regurgitated sometimes but not often. It wasn’t always acidic, a lot of the time it was non acidic. But food and water felt like they were not going down properly and instead we’re kind of just stuck in my throat or collarbone region, and if I belched they would easily come back up. Food was often undigested hours and hours later. I also had 3x episodes of coffee grain vomit where I was admitted to hospital. They discharged as my blood count was stable and said they believe I have had Mallory Weiss tear each time.

I saw a gastroenterologist recently and I lost 15kg in a short ish space of time. I’m 22 and full time power chair user. So quite inactive. I’ve likely lost tons because of regurgitation.

He has scheduled me for an urgent transnasal endoscopy and biopsies and after that, a BRAVO test. Has anyone ever had this before? What caused it for you? Did anything help you? Sometimes I cough when I eat and I can taste tablets in my mouth. I’ve never heard people describe these symptoms before and I feel so alone. Not looking to be ‘diagnosed’ just want to see what kind of stuff is out there.

I’m a bit confused.

So upon graduation, I will not be fit for work or work related activity, how much in total would I have a month to live from?

I live alone in a 2 bed council wheelchair accessible bungalow but I under occupy.

I get the enhanced element of both PIP rates.

I am 23 at the minute

I have severe ME and EDS

Will I be able to afford to live upon graduation if I got a motability chair ? Is there anything I should be doing? Could I afford to rent a power chair on Motability that is £60 a week?

The amount of really nasty comments some people make to you when you are crowd funding for a chair is absolutely vile, the amount of comments I got on Reddit of people just saying straight up nasty stuff about me or my disability or acting like armchair doctors is insane! People harass you, stalk your profile, comment on all your posts and search for any little hairs they can find and accuse you of lying or whatever else

I gave full clarity in my fundraiser that I did currently have a chair, but the chair wasn’t suitable for me and that if I wanted to go to university and go to my medical appointments and such, I would need a different chair, I’m working with the Snowdon trust but obviously as part of the grant process I also am trying to fundraise because they tell you to do that. I am waiting for an NHS assessment on the 8th of June but I have no idea if I will qualify for anything or not.

The comments were all as you can expect. ‘You’re greedy! You want a wheelchair even though you already had one’

‘Why didn’t you return the chair to where you bought it if it didn’t work for you?’ ‘Why didn’t you buy a suitable chair in the first place?’

‘You can clearly afford it’

‘Some people are starving and you want a fancy chair’

‘You want fancy features on your chair’

‘You are just being dramatic those conditions don’t stop you walking’

These all have very obvious replies if you knew even the slightest thing about disability but unfortunately many non disabled people scream and cry and dogpile regardless.

The thought of the noises is what I dislike most.

I’m not having sedation.

Like it makes no sense, I’ve noticed a common one that triggers me for some reason is cottage cheese makes it higher, anything high in salt, hummus??? Anything fatty. Dairy cheese or milk. It also makes my body ache kinda.

I ate two pittas with baked chickpeas and feta the other day but it made me feel sick and gave me a headache and tachy/adrenaline feeling.

I’ve never had an abnormal blood sugar reading before or blood test. I do however have a family history of diabetes.

Thoughts?

Every time I see a video of somebody showing what they looked like in the past maybe when they were younger and were Emo like in the 2000s or something, or even later than that, I see a lot of people who comment hating on them and saying that they were either a trend hopper, or that they look boring now or that they have let go of themselves.

I would consider myself a big fan of alternative music and when I was a kid I used to look very extremely goth, I had a big black back combed hair, tons of facial piercings, I have stretched ears still and so on

But let’s face it, on my average day now I will rock around my house happily wearing my Winnie the Pooh pyjamas and if I’m gonna go out, I will probably wear a very casual outfit, I have some jeans, skirts and shorts and some tops, formal attire, casual sneakers, cardigans, etc..

This isn’t just kids who say this as well, I see a lot of adult alternative people who say the same thing, I even see a lot of people say this is because of conservatism but I genuinely don’t see how, the thing is obviously as people age and grow they probably are less likely to care as much about what other people think of them, I was a very real alternative kid, and I still like the things that I liked back then, I just don’t feel like I need to dress a certain way to prove that, and I don’t really care about the attention of dressing that way, I used to dress that way all the time and let’s face it it’s a hassle to try and put things like that on all the time, I care more about being comfortable especially as a disabled person now than I care about what other people think my interests are based on looking at me

I have never seen more judgemental people and experience more judgemental people than I did often in alternative spaces, people very much judge you based on how you looked, what you were interested in, the way you existed and where you bought things from. People say that these people are more accepting, but I honestly never experienced this personally. In fact most of my friends were basic people as the alternative people I befriended often were very cliquey. I have many amazing alternative friends still, but I don’t care about what people look like to be friends with them. I think it’s vain that people do. I met many alternative people who had very problematic views and were not very accepting, yet the community never really addressed these people, they just said that they weren’t real alternative people to try and and basically cast aside the problematic people in the community and pretend like it wasn’t their problem to acknowledge.

I’m obviously very aware from experience about the dangers that many alternative people faced due to their appearance, but I would often think that people would therefore express more leeway to people and not make assumptions based on how they are dressed, yet many alternative people that I’ve met have a very negative view of basic clothing and people who dress in a basic fashion sense, or they make comments very regularly being snooty or insulting about people for not wanting to dress the way they do, or as a retaliation deciding to attack what these people wear or stereotyping all of them because they think that one basic person they met being rude to them therefore means every basic person thinks the same.

I definitely think this is more of a thing I’ve noticed in recent or younger people, especially all of the 1 million rules that people have, which I never ever saw back in the day.

kind of just a rant because I felt like people here might understand but oh my gosh trying to sell a wheelchair online is the worst experience I’ve ever had in my life, people said to me that the price was the issue originally but genuinely it’s not the price that I’ve had an issue with, it’s the people.

some guy demanded to come get my chair at 9 pm at night and when I said to him that I could not do that and could do tomorrow, he then basically sent me some rude message about ‘oh well could’ve collected it but never mind thanks’… and told me he was going on holiday so couldn’t get it.

then the next day he texted me asking if he could come collect it! clearly a lie.

then his partner had the cheek to message me asking if they could collect it because i blocked him. sorry but if you’re gonna be rude to me then no.

and on Facebook I just had loads of messages from very weird looking profiles or people who would ask if it was still for sale or ask what the measurements were and then just ghost you…

people asking for random measurements of stuff that you wouldn’t require measurements of.

someone who bought my chair on ebay which clearly stated collection only then triple texted me because i didn’t reply in 2 hours, said he had no idea how he was gonna collect it but told me he’d tell me the next day or book a courier (which i did not agree to), then ghosted me.

someone asked if they could buy my chair for an offer and i said yes, they then texted me a day later telling me about how they’d ‘bought an RGK instead’ and telling me about all the details of it… weird

someone commenting on my for sale post saying argons are terrible and that tilite is better… what is the purpose

it is the wild west out here in the UK it seems…

the other day someone i’d never spoken to asked me ‘how i got the confidence to use a wheelchair’ because they want to use a cane but weren’t confident to

i don’t know if it was right to feel like this but i don’t know what to say when people ask this kinda stuff. i’ve never used that kinda aid and i feel like they’re assuming i choose to use a chair and that i could go without it maybe because i’m young. i can’t. i never had to think about this as without a wheelchair i cannot do anything at all. i use a wheelchair indoor and outdoors. i’d be bed bound without my powerchair.

is this a normal question to ask? i’ve had a few people several times now ask where to get a chair because they want one and the they’ve never talked to me ever again and it feels kinda.. hurtful? that my only value to people is helping them feel better about using an aid. it also baffles me i guess because is ‘confidence’ the right thing to say? it makes me feel a bit uncomfortable that it’s always people’s first ask when they see me even if it’s not maliciously intended.

so the front camera just doesn’t let you open it and snapchat keeps saying restart phone to reset camera

it randomly stopped working and i’ve hard reset it tons.

when i make a facetime it doesn’t let me use back or front camera… nor on messenger, but in snapchat and camera the back one works

diagnostics mode says it cannot detect presence of front camera

face id still works

does anyone else keep getting this when they go to pay?