chronicallyconfuddled

[chronicallyconfuddled]

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.

[chronicallyconfuddled]

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

[chronicallyconfuddled]

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.

[chronicallyconfuddled]

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.

[chronicallyconfuddled]

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

[chronicallyconfuddled]

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??

[chronicallyconfuddled]

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??

[chronicallyconfuddled]

Do able-bodied people daydream about using a wheelchair

[chronicallyconfuddled]

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

[chronicallyconfuddled]

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

[chronicallyconfuddled]

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

[chronicallyconfuddled]

Why does it take so much energy to keep my body from falling apart

[chronicallyconfuddled]

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 :)

[chronicallyconfuddled]

I've been away from this blog for ages but I'm back!

[chronicallyconfuddled]

Fuck knees, honestly

[chronicallyconfuddled]

Physio, 6 months ago: your pain is probably muscular, just try doing more exercise and it should go away :)

Me, 6 months later, now working twice as many shifts as I was, going on frequent walks, with worse joint pain than before:

[chronicallyconfuddled]

Being at work has been so painful recently. I don’t think the cold is helping either.

And my friends are trying to convince me to see a doctor about my pain, but as much as I know that they’re right, I don’t know whether it’s a good idea. Especially in the middle of a pandemic. It would be great to get a diagnosis so I can talk to my work and see what accommodations can be made, but it could take years to get to that point.

Like, on the one hand I really want to talk to somebody and see what they think about my theories/suspicions, but on the other hand I’m convinced they’ll brush me off and it won’t actually lead anywhere. And then it’d be a wasted trip, which feels like a really bad idea considering, yanno, pandemic.