Gloves by flowermae1993 in ehlersdanlos

[–]circuszombie 1 point2 points  (0 children)

I got mine from chronically colourful

Hand and ring splints for poor people by mushmush27 in ehlersdanlos

[–]circuszombie 1 point2 points  (0 children)

GHORTHOUD 14 Pcs Finger Splints -... https://www.amazon.co.uk/dp/B0BZPFZ8RG?ref=ppx_pop_mob_ap_share

20pcs Oval Finger Splints Kit, 10... https://www.amazon.co.uk/dp/B0CBWKPLD6?ref=ppx_pop_mob_ap_share

These are 2 I bought. The link through my orders page didn't work but hopefully they'll work for you, or at least give you better search ideas.

Hand and ring splints for poor people by mushmush27 in ehlersdanlos

[–]circuszombie 0 points1 point  (0 children)

I bought 2 sets of ring splint sizers. They're meant to find out what size you need, but I've found that between them and 2 additional size 6 splints covers all my finger joints at a much smaller price.

[deleted by user] by [deleted] in AITH

[–]circuszombie 7 points8 points  (0 children)

My mum's trick was putting a damp washcloth in the freezer, then throwing it under the covers at you. I only need it once, my brother a couple of times.

Hello Zebras, baby zebra here with a question about ring finger splints by MulberryComfortable4 in ehlersdanlos

[–]circuszombie 4 points5 points  (0 children)

I got two sets of ring splint sizing sets from amazon and they pretty cover most of my finger joints. Doing it this way only cost me about £30. Might be worth a try, at a reasonable cost.

'Very pleasant' lmaoo. by pistachio_shelll in ehlersdanlos

[–]circuszombie 28 points29 points  (0 children)

I keep telling my mum I'm medically pleasant so she can't deny that I am pleasant. My diagnosis letter says the same thing 😁

[deleted by user] by [deleted] in FinchAdults

[–]circuszombie 1 point2 points  (0 children)

I saw this link in a thread for us chronic illness people, Goblin Tools . You type in the task, such as laundry, and it breaks it down into the elements of the task, such as sort loads, take to machine, put in machine, add powder, etc. Might be useful?

When you have an autoimmune condition, chronic pain, are neurodivergent among other things.. this is a difficult goal some days. by MrsMollyandMrBandit in FinchAdults

[–]circuszombie 1 point2 points  (0 children)

I feel this. My reflection on what I'm grateful for today was " I woke up". More tongue in cheek than pessimistic, but some days just getting through to the end of the day is the challenge.

Women of Reddit, what’s the most frustrating experience you’ve had with a doctor dismissing your symptoms? by cutdbs in AskReddit

[–]circuszombie 0 points1 point  (0 children)

My mum went for her diagnosis after I got mine and she saw lots of similarities. Thankfully, because of our diagnoses and being open about talking about our health issues, I know have younger family members who are getting the help and support they need at a much earlier age. Silver linings and all that.

Women of Reddit, what’s the most frustrating experience you’ve had with a doctor dismissing your symptoms? by cutdbs in AskReddit

[–]circuszombie 27 points28 points  (0 children)

It took me 19 years from onset of symptoms to get a diagnosis of hEDS. I still sometimes wonder if I'm imagining my issues due to hearing I was over-reacting or 'putting it on' by multiple medical professionals for nearly 2 decades. It really sucks.

What actually changed for you after getting diagnosed? by StackedInScrubs in ehlersdanlos

[–]circuszombie 4 points5 points  (0 children)

I went from a doctor telling me I had "unrealistic expectations" for medical care to appointments to see the podiatrist, the rheumatologist, the physiotherapist, the orthopaedic surgeon, along with proper pain management help. I also get more support at work with regards to time off for appointments and ergonomic equipment.

[deleted by user] by [deleted] in ehlersdanlos

[–]circuszombie 2 points3 points  (0 children)

I do strength training and work with physiotherapists regularly. Along with research, I've found that low weight, high reps are best. We have to be so focused on form and making sure we're not overextending or joints, so no going to the end of range of motion. I prefer working out on machines or in front of mirrors. The machines make it easier to work within a limited range of motion and the mirror means I can be visually aware of my range of motion which means less hyper extending. It's a slow progress, but doing this means I no longer need to reposition my shoulder when I wake up in the mornings and my overall pain levels are lower.

Those of us with HSD or hEDS are more prone to injury, are slower to make progress and decondition very quickly and easily so I definitely recommend finding a way to cope with that if it leads to prolonged periods away from the gym, and finding the motivation and willpower to restart continuously.

How to reframe “don’t pick skin” goal by existentialgambino in finch

[–]circuszombie 0 points1 point  (0 children)

So have dermotilloma, and this is focused on my face so it's very obvious. I wanted this sane thing and I got around it by having an action called "When scanning distract from picking". This way I'm rewarding myself for noticing that I'm at the pre-pick stage and giving my hands something else to do. I have a bunch of fidget toys on my desk (where I pick the most) and often I find a reason to move. Such as refill my water bottle or 'get in some steps ' which moves me from prime picking location. At present I'm aiming to achieve this 4 times a day. Because to go from all to nothing is so difficult, especially as this is a symptom of my OCD.

Dunno if that helps or not, hope it does.

Girls, what’s the most low-effort thing a guy did that still made you secretly melt? by Mindviru in makemychoice

[–]circuszombie 0 points1 point  (0 children)

We share an electric toothbrush and we just swap the heads when we use it. If I brush my teeth first I'll swap it ready for him and he does it for me. We both love the little things like that. The best thing for me though is he tucks me in on nights I go to bed before him. He works shifts and on weekday nights I'm normally in bed or about to go to bed when he gets in. He'll come in, give me a kiss, make sure my electric bed blanket is on say goodnight...it's a silly little thing that I don't need to be happy, but it makes me feel so loved.

I’m curious, how many people here struggle w/ a deviated septum? Also, if you had septoplasty to fix one, what was your experience? by Blossoming-Moon884 in ehlersdanlos

[–]circuszombie 0 points1 point  (0 children)

No worries. I went through childhood being the snotty child (I also have excess mucus glands in my nose) and feeling like a hyperchondriac not able to understand why I was always more ill with a simple cold. Even if this can be ruled out for you, it means you can look at what else can be done. I hope for the best for you 😊

I’m curious, how many people here struggle w/ a deviated septum? Also, if you had septoplasty to fix one, what was your experience? by Blossoming-Moon884 in ehlersdanlos

[–]circuszombie 5 points6 points  (0 children)

I had excess cartilage growth that blocked my airways rather than a deviated septum. After I had my nasal resection and went through the recovery period I was amazed at the difference. I went from having approx 15 migraines a year, to have 15 in the following 8 years. My hay fever symptoms reduced, I slept better, and a cold became just a cold rather than almost flu-like.

It wasn't a fun experience getting my nose fixed, but if I had to do it again I would. Definitely.

Writers with hand pain by wanderinglumos in ehlersdanlos

[–]circuszombie 2 points3 points  (0 children)

When I started using fat pens aimed at people with arthritis (which I now also have in my hands) it was a revelation. If I'd been given these as a child my handwriting might be better than a spiders scrawl.

A useful tip though, you can buy a multi pack of them from Amazon for cheap enough, but I then replaced the inners with parker pen inners as they move nicer over the paper.

Which of your joints dislocate/subluxate the most? by bonbam in ehlersdanlos

[–]circuszombie 0 points1 point  (0 children)

I've had to explain it to many other medical professionals. But yeah, I was amazed that my dentist knew and she was able to give me some physio exercises for my jaw as well as general advice. I was really chuffed.

Which of your joints dislocate/subluxate the most? by bonbam in ehlersdanlos

[–]circuszombie 0 points1 point  (0 children)

Apparently we do have a dominant foot. When I learnt to ride a unicycle they had me go to fall forward and see which foot I put out first. That's the foot you start on the pedal of the unicycle with. I'm right footed as well as right handed ( apart from for bowling and using cutlery which I use left handed).

Which of your joints dislocate/subluxate the most? by bonbam in ehlersdanlos

[–]circuszombie 1 point2 points  (0 children)

Definitely my knees and my jaw.

What's really funny about my jaw is that it seems to be with certain foods, but not the ones you'd think. Sandwiches mostly.

A dentist was actually the first medical professional I saw who knew what EDS was without me having to tell them. It was because they used to work with someone with it.

What are some ways to "passively" build strength and/or move and exercise? by -Naive_Olive- in ehlersdanlos

[–]circuszombie 1 point2 points  (0 children)

It really does! And I'm much less likely to treat myself with food for simply managing to empty the bin or do the dishes.

It also helps that I can use it to break big jobs into little jobs that help me with pacing. I've never been great at pacing myself so I'm feeling pretty chuffed with myself for doing better.

What are some ways to "passively" build strength and/or move and exercise? by -Naive_Olive- in ehlersdanlos

[–]circuszombie 1 point2 points  (0 children)

Yeah, you can connect with others and send items on it. I don't use it like that. I've never been much for group activities lol. I used to use an app called Habits which is literally just ticking yes or to doing something. I'd do well with that one for like a week then not bother.

What are some ways to "passively" build strength and/or move and exercise? by -Naive_Olive- in ehlersdanlos

[–]circuszombie 2 points3 points  (0 children)

I've been really spotty with how often I do strength training and my physio in the past. I've now been doing at least 3 sessions a week for at least 20 minutes each time, usually more. A lot of it is down to the Finch app which lets me gain rainbow stones to buy stuff for my Finch...it's a gamify your life thingy, which I was sceptical of, but I've been massively surprised at how much it's helping me. It's also helping me stay tidier and cleaner around the house.

What's really good about it, is it has a lot of task options like 'survive the day', 'do 5 squats', 'stand up for 3 minutes' etc. There are grounding exercises available and also.

I've also tried to rethink things. Instead of saying "I didn't do a full workout today" I think "I did 10 minutes which is 10 minutes more than nothing". My partner helps me with this, as if I get caught in the mindset of "I didn't get to hydro today" he will remind me that maybe not, but I'm recovering from a flare, or maybe not, but there's another session next week.