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@chronicallyconfuddled
Do drugs kids this is sick
I’d really love some more disabled friends. I’ve been getting so frustrated with being surrounded by able-bodied people All The Time, and I miss the community that comes with having disabled friends.
I mostly want more irl (ie offline) interaction, so it would be lovely to get talking online and eventually meet up and hang out.
If you’re physically disabled and you live in the UK (especially north England) feel free to drop me a DM! If you’re not comfortable meeting offline I’m also very happy to just chat on here 🫶🏻
I hate when my friends get pissed at me for Being Late or Not Respecting Their Time or Losing Things or Forgetting Stuff cos like. It’s not like I’m Trying to be awful at timekeeping and late for everything and letting people down. I don’t actually think it’s funny or a laugh or heehee silly me. It’s incredibly fucking distressing and it’s my Entire Life. I’m always feeling out of control and like time is passing at a different rate for me than everyone else and I can’t get a handle on how long it takes to Do Things or what a minute feels like or an hour or 2 hours. It’s upsetting for my friends but it’s fucking upsetting for me too and I feel like this is something that people just do not understand. It can be so scary to Constantly Forget Everything and not know where or when you are and not be able to keep track of time or things or people. I just want a break and to stop being blamed for this horrible shit that I can’t fucking help.
I wish I had someone to talk to about my disability
I thought I could vent to this one friend who has the same condition and similar circumstances but apparently I’ve been making them feel guilty and they don’t want to talk to me
So that’s great
I just want to vent and scream and cry without worrying about making people upset or feel like I’m trying to compete with them
There’s just no one in my life I feel like I can go to
I think it should be okay not to love your life all the time. I get so upset and angry sometimes that I have to use my mobility aids, I get frustrated that I get tired so easily, I resent taking my medications, I hate that I can't do the things I used to be able to do.
The community that I've found is amazing, but sometimes I wish I didn't need it. I wish that not every aspect of my life was affected by my condition.
I can't always be positive about my disability.
I'm so fed up of this. I'm not even feeling the worst I've ever felt, in fact I'm not really in that much pain. But I've still been bed-bound all day, unable to get up even to feed myself.
I feel like I should be working instead of just,,,, sat here moping. But I can't bring myself to do anything.
I'm getting a wheelchair!! I won't be using it full-time but I am so excited to have it for the days when I feel trapped in my room by my disability. FREEDOMMMMMM
Anyone else get really panicky when the reality of being disabled hits them? Like, I'm currently going through a bunch of assessment procedures so I can get support at university, and just reading through all the forms filled out by my assessors fills me with anxiety for some reason. Like "she has xyz condition, which causes abcde symptoms" "she needs this and this and this and this and struggles to function and has difficulty with mobility and and and"
Like.... I know it's all true, that's all stuff I have told them lol. Just seeing it all laid out in front of me so matter-of-fact somehow,,, makes it more real? Or something??
Things often do feel more real once you start changing things in your life to accommodate for them, yeah. And of course reading it all grouped into one document means you have to deal with it all at once, which if you think about it, you usually don't. I found the same thing when applying for disability benefits.
Telling someone you have X symptom and going over what that means can sometimes feel iffy, but it's doable. Similarly, admitting one thing you can't do- even to yourself- can suck if it's something that's easy for most people, but if it's just that one, it's easier. Like, you don't have to think about all the problems you face at once in a normal day.
When you're just getting through each problem as it comes up, you only face one thing at a time. We actually learn to do this to cope better with challenges as people in general. For example, when I'm trying to decide how to deal with my greasy hair because a shower is too much for me that day, I'm not also thinking about how hard it is to lift a full kettle, or how far I can walk before I have to stop, or why I can't leave the house on my own. I'm only thinking about shower-related problems. And- only now. That's another common coping method in people. I'm not thinking about the pain and fatigue I felt years ago, or how long it's lasted, and I'm not predicting how many years it'll go on for in the future, because that's a LOT to deal with. I'm thinking how tired I am today, and what impact this specific shower will have on me for the next 2-3 days maybe.
But applying for something like this takes that away. It forces you to acknowledge it from when it started to now, because you have to explain the issues and provide evidence of your diagnosis and so on, state that it's affected you since then and explain how, and you're having to get accommodations and/or support because these problems aren't going to go away (either for a long time, or maybe ever), which you also may need to explain in some applications processes. So you can't just think about today or this week, you're looking at the whole timeline there.
And even if you stay in the present as much as possible, having to talk about AAALL the things you can't do, all the things that suck, all the challenges you face daily, all at once, (AND without being able to minimise issues or use any kind of humour to soften it, btw) that's extremely hard! And again, something you don't usually Have to do in life. If you can take one challenge at a time, or focus on just one symptom that's making life hard in that moment, it really can help. But putting together or reading a form or report, you're thinking about everything all at once, and telling it all to the same people no less.. that's going to bother even the toughest of us, and it's easy to feel overwhelmed- especially if this isn't something you're used to doing.
So rest assured, you are not alone in finding this moment especially hard. It isn't fun, but it is a natural human response to having to face the full scale of a problem you'd usually face bit by bit, in one streamlined sitting.
It's like... Cake. Eating a bite of cake (if you don't have medical issues specific to eating at least) is usually easy enough. Eating a whole slice in one go, not so easy, but there are many people who could fit it all in their mouth. So, awkward and difficult, but doable for some. Eating The Entire Cake Whole in one go? Unless you have the jaws of a snake and the esophagus of a shark, mayyybe don't try it, it will not be a fun time. x')
Thank you so much for this. It's very reassuring to hear that this is something other people feel in my situation, and also that this anxiety isn't necessarily something that I'm Always Going To Have To Deal With in relation to my condition, it's just a product of the processes I'm going through Right Now.
I've hope everyone who needs to sees this reply, because it's excellent and lovely and so so true.
Anyone else get really panicky when the reality of being disabled hits them? Like, I'm currently going through a bunch of assessment procedures so I can get support at university, and just reading through all the forms filled out by my assessors fills me with anxiety for some reason. Like "she has xyz condition, which causes abcde symptoms" "she needs this and this and this and this and struggles to function and has difficulty with mobility and and and"
Like.... I know it's all true, that's all stuff I have told them lol. Just seeing it all laid out in front of me so matter-of-fact somehow,,, makes it more real? Or something??
Do able-bodied people daydream about using a wheelchair
I love having disabled friends but like. Would be really nice if I didn't feel like they saw me as Less Disabled. Cos they use wheelchairs and I don't (yet), I feel like it just looks like I need less support. Like,,,,,, I would just really like it if they asked me how I'm doing once in a while, or slowed down for me so I'm not putting myself in pain hobbling after them
My shoulder hurts so much 😭
It's so unstable, I've been having subluxations all week. I've taken some pain meds but they're only just taking the edge off
Does anyone have experience with using shoulder braces for hEDS? I've found some at a reasonable price but don't know if they'll help at all
I feel like I need to crack all my joints and then stretch them out until everything is 2 inches longer but I *can't*, it's just painnnnnnn
Why does it take so much energy to keep my body from falling apart
I have made so much progress recently with coming to terms with my disability. My uni's disabled students officer is so so lovely and they've made it such an approachable and non-scary topic.
I've been using a cane for the past few weeks (and have just ordered a really beautiful new one!)
I'm in the midst of sorting out a rheumatology consultation which will hopefully lead to a diagnosis
And I have a GP appointment soon to discuss autism assessments
A year ago I was so scared to make any of these steps, and here I am pushing forward and taking steps to make my life more manageable. Today I'm proud of myself :)
I've been away from this blog for ages but I'm back!
Fuck knees, honestly