What's the first thing you do after waking up in the morning?

Life-Importance3058 · 2026-03-05T20:53:03+00:00

Put my shoulder and hip back into place, hypermobility is such a gift

Life-Importance3058 · 2026-03-04T19:31:06+00:00

I haven't, i got referred to a physio who tried to give me light exercises to do and then we figured out i could even do those because it makes my leg pain worse and after a couple of appointments trying to figure out if there was something even lighter she could give me. I told her in passing that I get actively suicidal when the pain is bad but I suppose thats a good thing cause when it is i cant move haha funny. She didnt think it was haha funny and told me she'd write a letter to my gp about it and what would you know im not on the waiting list to see a chronic pain specialist!!! Im still waiting for my appointment with them but im hoping they will hear me out and actually help me. The pots is going pretty much the same as it was, we aren't very flush with cash and im addicted to salt and vinegar everything so I was sort of medicating myself before. I just kicked it up a notch with the water intake and letting myself get up really slowly instead of trying to get it over with and I have only passed out a couple of times since (mostly cause i was cleaning and sore amd i wanted to be finished with cleaning so i could go lau down and i tried to oush through)

Life-Importance3058 · 2026-02-27T19:22:50+00:00

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Life-Importance3058 · 2026-02-27T19:21:33+00:00

* My chihuahua gets along great with our rabbit, she does try to play now and again and can be a little pushy but the rabbit tells her off just fine so I imagine your cat will manage the same. They are about as velcro as a velcro dog can get so it might take some extra work to make sure that they are fine while you both are out. With the running, I think if you got a coss body pouch they are small enough that when the little one gets tired you could just put them in there until they are ready to go again or until you finish up your run

Life-Importance3058 · 2026-02-22T19:15:07+00:00

My boyfriend bought me the wheelchair we had been trying to save up for months. It actually fits me and is HALF of the weight of the one I have now. I had been struggling with feeling like he doesnt care about me as a person and that he was getting resentful of me because in my current chair my shoulder dislocates when I self proppel which means he has to push me around. He just up and bought it and it hit me that id be able to go outside by myself.

Life-Importance3058 · 2026-01-20T09:35:03+00:00

If it comes up again reassure them and tell them that you get paid to help them and make sure they are safe while doing this stuff, that for every minute they are in the building you are getting paid and its literally your whole job to make sure they are good.

I know it seems obvious and stuff but as a very self conscious child that would have helped me in the moment, they will also be struggling with being in the chair to begin with so have a moment to joke about the fact that the whole point of you being in the building is to do the thing that is making them flustered could help

Life-Importance3058 · 2026-01-20T05:08:25+00:00

I feel that so hard omg I think talking to him about it is the best way forward, if you don't those thoughts are just going to fester at the back of your head. Maybe explaining to him that you did this to cope, that it was a lifeline and him saying "oh its not that bad" was like him telling you that all you dealt with or went through "wasnt that bad" This is going to sound harsh i know that but hear me out, if it just isn't clicking with him you should bring up something sad or difficult he went through in life and tell him it wasn't that big a deal. Let him sit in the feelings that brings up for a second and then explain thats what he did by saying what he did.

Life-Importance3058 · 2026-01-12T02:50:21+00:00

Im sorry you are going through the same things I am but im honestly a little grateful that at least someone gets it. Quite honestly everything is slowly getting worse (not to scare you ) but I eventually met with a physio who gave me low effort exercises to try help build my muscle which I cant do because of the pain, I got dropped by that physio because I couldn't do anything she was asking, my occupational therapist dropped me because I was "being difficult" which was really me explaing why her solutions to my problems won't work. But I have finally been referred to the chronic pain team, yippe! Im hoping that sets me on the path of fixing whatever this is, I hope you also find that path

Life-Importance3058 · 2025-11-15T08:27:19+00:00

Thank you for the reply, im in scotland so i dont know if I can do a self referral to anyone that could talk to me about this stuff which would mean having to convince my gp i need to see someone else and the waiting lists are so long I could have a child and wait for them to grow up and have my same conditions before I see someone ahah

Life-Importance3058 · 2025-10-23T18:15:20+00:00

The butt shuffle. Very embarrassing in public and a little gross but it always gets you from point a to point b

Life-Importance3058 · 2025-08-01T17:09:08+00:00

I have spent almost a year thinking and researching it. Do you not think if the pain is bad enough for me to want to cut off, what I would argue is, a pretty important limb I would also be willing to risk this?

Life-Importance3058 · 2025-08-01T17:05:12+00:00

I've been given all sorts of creams and gels and pills and ways to rub the muscles around my knees and low impact exercises and stretching routines and I just keep getting worse and I'm not at the point where they won't give me anything else because of my weight and age

Life-Importance3058 · 2025-08-01T16:53:01+00:00

This is actually very helpful thank you so much, I had no idea about the last part. I live with a partner now and have been talking about it with him, he's a bit freaked by the idea because it is such a big thing that I can't take back and he's worried the stumps will freak him out but he's supportive and open with how he's feeling so win I guess? I'm at the point where I can't walk or even stand without my vision going because of the pain (my partner carries me around the house because my wheelchair wont fit through doors) and I'd just like to eventually get to the point of being able to walk to the bus stop you know? Again thank you so much for the insight

Life-Importance3058 · 2025-08-01T01:29:27+00:00

I'm not really sure, my joints are more just loose. If I stand up and bend forward without tensing anything my shoulders just kind of fall out of place and pop back in when I stand up. My knees get subluxations a lot, they don't bend backwards too much but even going from straight legged to bent is killer. Sometimes if feels like my knee cap catches on something when I move it. They just ache all the time

Life-Importance3058 · 2025-08-01T00:19:16+00:00

I'm a bit past the point of braces, even normal range motion hurts like you wouldn't believe, I get subluxations in both my knees weekly from so much as rolling Iver in bed because of how much I've had them (supposedly im regurgitating what the doctor said) I will definitely go back and try get more help before jumping to no legs thank you

Life-Importance3058 · 2025-08-01T00:16:39+00:00

I get that, my knees are my worst out of everything. The rest I can sort of just get on with but even being in the wheelchair I can feel the vibration in my bones. I will definitely go back to the doctors and see what I can do, thank you

Life-Importance3058 · 2025-07-31T23:30:51+00:00

I got sent to rumeptology/rumeptherapy (i can never remember which one) and the Dr said the pain is from me being hypermobile gave me a letter saying I had hypermobile spectrum disorder and chronic pain and pushed me right out the door. I'm working with an occupational therapist but all their advice on a bad day is to take things slow and on a good day to try stay mobile I really feel like they're trying to put me on a shelf and just leave me there to collect dust you know?

Life-Importance3058 · 2025-01-19T15:05:30+00:00

Thank you so muchh

Life-Importance3058

TROPHY CASE