@artsyhonker that sounds like essential advice!

could you explain what deconditioning means here? I understood it like "unlearning things/moves that aren't good for you"

@distelfliege ah! No, that's good, though hard work; I mean loss of general strength/fitness through inactivity, in my case usually because of injury.

@distelfliege It's difficult, because I cannot increase my activity levels as fast as a typical-bodied person can without injuring myself. If I have a few days off from e.g. walking it takes ages to get back to normal-for-me mobility, I can't just resume my usual routine like nothing happened the way people with normal joints can.

@distelfliege But if I'm not doing a certain amount of activity, I get ever more injury-prone. Easy to end up in a spiral of getting less and less strong, and having more and more soft tissue injuries.

@artsyhonker oh, thanks for explaining! :) I'm pretty active and I think I'm also an athletic (chubby) type so that is good for me.
I can't run because of my knees, I had so many injuries in my teenage years that the knees are both really messed up. I couldn't walk long disctances. but I can ride my bicycle

@distelfliege Cycling has been a really important way for me to maintain some fitness when I couldn't walk far or fast without pain (knee issues, then shin splints, then plantar fasciitis). When my knees eventually complain too much about the cycling, I plan to buy an electric assist bike.

@distelfliege At the moment my walking mobility is improving, but only because I made a big effort to strategically increase it. I have more foot and hip damage than knee damage though. Every body is different and the important thing is to do what works well for you. I've been told by multiple physiotherapists that I must not run unless I'm about to be hit by a car or something.

@artsyhonker that's good! I'm glad to hear your strategy works! I mustn't run too..
I have shoulder and finger joint issues as well, which is a bummer sometimes because I love crafts and I'm a craftsperson and I need my fingers all the time.

@distelfliege I have ring splints which help me a lot with hand pain:

@artsyhonker wow, neat! and beautiful!!

@distelfliege I suggest trying plastic ones first, silver is expensive but more comfortable and stronger. Jussec, getting big computer so I can dig out some links...

@distelfliege OK, links.

Plastic splints: https://www.3pointproducts.eu/en/attention/a/3pp-oval-8-finger-splint-graduated-set/23 don't buy them from anywhere else or they are about three times as expensive!

Silver splints, over-the-counter from a UK maker:
http://ringsplintsbyzomile.co.uk/ I don't think she ships to non-UK but no reason someone else couldn't

Custom silver splint designer in Utrecht:
https://www.silversplints.com/en/ I got my thumb splint from them, it's great, but was expensive because I had to have it prescribed by a hand therapist.

@distelfliege It may also be worth looking at what people are doing on Shapeways with 3D printed splints:
https://www.shapeways.com/marketplace?type=product&q=splint&s=0#more-products

@distelfliege

With all of these splints there is some loss of manual dexterity, which is annoying. After a while you get used to it, but tying shoelaces is still way more annoying than it used to be. But I wear a lot of splints, you may not need to splint as many joints as I do.

Some hand therapists think splinting is a good idea and some are very anti-splint. I use my hands more with the splints and they are getting stronger as a result.

@artsyhonker I don't need splints at the moment I think. I hope it stays that way for a while! loss of dexterity would be a nightmare for me.

what I like is how they keep your fingers from bending the wrong way.

I do have the tendency to get trigger fingers and I had surgery for trigger thumb.

@distelfliege There are splints for trigger finger too, I think the We Design site is probably the best of the links I've shown you. There are also some American ones.

In general, splints that are flat are more comfortable than those made with round wire; something to bear in mind if you're exploring various options.

@artsyhonker if I ever pick up playing saxophone again I'm absolutely getting finger splints!!

@artsyhonker 💜 💫 I have to go grocery shopping now, thanks so much for sharing all this!

@distelfliege It's worthwhile to go through the whole official criteria (Beighton, Brighton, and other criteria) because EDS is a degenerative condition. The more hypermobility you put your joints through, the worse they're going to get (if it's EDS). There can also be major organ involvement (I'm currently dealing with my stomach not absorbing nutrients properly, as well as other "fun" GI issues. Have already had my gallbladder removed as well, and regularly pass kidney stones).

@ThisQueerBashesBack thanks for the tip! I knew all my life that I'm hypermobile, I only learned through queer disability activism communities that there can be a condition connected to that. If I should have eds it would be a very mild form I guess. I'm already 43 and mainly have issues with the hypermobility stuff. (joint degeneration)

but I'll keep an eye on that and if needed, I do know what to look for and have it checked, thanks to you all! 💫

@artsyhonker thanks for the links! when I was still playing saxophone I often wished I had something like that because my fingers made funny shapes bending backwards, that caused my teacher to think I was pressing them down excessively. but I wasn't.

@artsyhonker me too. but luckily, it's still okay. I love spending my summer vacation with cycling tours, camping, and that's where I can only ride a muscle powered bicycle. to recharge an e-bike would force me to leave the forests and beaches every night to get to a power outlet.

I have to ride less km per day sometimes, or take a rest day when on tour but most of the time, it's ok.

@distelfliege I can't camp any more: haven't found a mattress that doesn't leave me in agony :-(

@distelfliege but I'm holding off on electric assist as long as I can, because the longer I wait the better the technology will get

@artsyhonker oh, that's reason for hope!
I do also hope I can keep camping for as long as possible. matresses are a problem, but I'm doing really lots of yoga-style gymnastics (in a hypermobility-aware way) to keep my back healthy. the newer air matresses with just the right amount of air in them are cool for me.

@distelfliege Thinking about it, maybe I could get a memory foam mattress from IKEA (which is where my current one is from) and cut it up so it would fold and go onto my existing trailer, or even on top of the panniers. Hmm. I'll have to experiment. I'd love to be able to camp again.

@artsyhonker better camping matresses are being developed too. I think they start making air/foam combination matresses now, too.

for me, apart from the matress thing, a problem is that I can't kneel any more, and I'm sliding around on my bum when I'm moving in the tent, all the time. 😂

@artsyhonker aaaah that sucks. :(((

@distelfliege yeah, I feel so much better when I can get outside a lot but my body really objects to anything that isn't a super good mattress, so, no camping for me. Unless I build a truly amazing bike trailer! That would be fun. But heavy...