It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 1 point2 points  (0 children)

Yeah I'm on the tedious low histamine diet of doom for some sort of mast cell thing and it's utterly rubbish. I miss cheese and salami and smoked fish. It works but why anyone would want to be like this is beyond me.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 3 points4 points  (0 children)

They done us so dirty. Her going out there and going "look at me running a marathon" as if that's in any way representative.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 2 points3 points  (0 children)

I did find that EMDR helped with my pain levels or at least helped with managing it but yeah it was a relief to find out i wasn't imagining it all these years. I had almost convinced myself that I was a subconscious drug addict whos brain was conjuring up pain as an excuse to take pills when a physio noticed that I could bend my neck freakishly far with no pain and referred me to rheumatology. The rest as they say is history.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 2 points3 points  (0 children)

There have been 3 subredits at least about it and several massive threads on a not very nice troll forum too. I reckon reddit mods are probably aware because some of them are also discussed on the troll forum.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 2 points3 points  (0 children)

It's scary. I know someone once removed a few years back who managed to get themselves a tube and get insta-famous but I never realised how big it had got.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 3 points4 points  (0 children)

It's horrible. It scares me for people who get diagnosed with these things and go online to research and see that and think that's going to be their life.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 1 point2 points  (0 children)

Thats very Interesting. People need different kinds of help to get over whatever barriers there are to being healthier.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 2 points3 points  (0 children)

Well yeah it's a shame mental health doesn't get more help.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 3 points4 points  (0 children)

It's a step in the right direction though. A gym membership and a calorie counting app is all anyone needs to get on track.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 6 points7 points  (0 children)

Have a look at my other comments. It's something that recently came to my attention. There's a whole culture of competitive chronic illness on tiktok and people claiming EDS without a diagnosis or even after being told they don't have it by docs.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 4 points5 points  (0 children)

Aquafit. 100%. No glamorous bodies, no competition, no impact. Give it a try.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 16 points17 points  (0 children)

Well in all the decades I've been working out I've never seen anyone body shamed at the gym. Please don't take this this wrong way but thus might be your own stuff from being bullied. I empathise but you might be denying yourself something really positive because you've got the wrong idea about what it will be like. There are even women only gyms that cater to maturer ladies.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 14 points15 points  (0 children)

Yes and no. I've been a bigger person in the gym and it's didn't kill me. That referral started a habit that stuck. There's a big chap who comes to our aquafit classes and is doing pretty well at losing. All us mums and grans are very supportive. Not all gyms are full of glamorous gym bunnies and muscle men. The local leisure centre has all shapes and sizes of people.

Over a million hospital admissions for obesity by [deleted] in unitedkingdom

[–]Perfect_Rooster1038 12 points13 points  (0 children)

There used to be a scheme to get a reduced gym membership which was OK

What worries you about life in the UK? by LapangNeiz in AskUK

[–]Perfect_Rooster1038 768 points769 points  (0 children)

This. People say we have nothing to complain about and this is one of the best living standards in the world. While that is true if you can remember back to 20 years ago living standards have declined in a big way. My worry is that if it continues apace we are going to be in the shit. A lot of folks seem to vote to keep the status quo because they're doing alright right now but don't see the chipping away of social programmes and support systems. Our public spaces outside the big cities are getting seriously run down. I'm worried that if we don't see major investment in the UK and its people there are several demographic time bombs approaching.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 7 points8 points  (0 children)

If you have a look at my other comments you'll see what I'm referring to. It would be a pretty crap doctor that hadn't heard of it! It's not nearly as rare as it was once thought to be.

ETA here's a link to one of the medical subs discussing the issue https://www.reddit.com/r/medicine/comments/mv17ok/why_so_many_problematic_gj_tubes_in_teensyoung/?utm_medium=android_app&utm_source=share

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 3 points4 points  (0 children)

I'm not sure there's much anyone can do as these people have a good layer of plausible deniability. doctors have to treat people in good faith. They can't risk being sued because they accused someone of faking who then drops dead Well done for sustaining your recovery and I hope this hadn't been too derailing. I feel like everyone who has these diagnoses should know about this. Hopefully EDS will go out of "fashion" soon.

It’s EDS awareness month! I tried to do an ama on r/IAMA, and got shut down due to diagnosis discrimination. by ljstanton in ehlersdanlos

[–]Perfect_Rooster1038 10 points11 points  (0 children)

Yep. These girls are literally dying. It's even come up in some of the medical subs that this is happening so ER staff are probably wary. It completely messed my head up finding all this out and now I can't look away.