@i-need-that-seat / i-need-that-seat.tumblr.com
Sorry if this comes across as a bit creepy but do you know if there are any eds support groups in the Bay Area?
Not creepy! I’m in a Facebook group called ‘Ehlers-Danlos Syndrome Support Group, SF and Northern California’. I personally haven’t found it useful **for me**, but it’s pretty active, so that might be a good starting point!
I hope this isn't a weird ask or anything but I found out about hypermobility syndrome today and now I'm thinking I might have it... I score 5 on the Beighton Scale, maybe more because I can't tell if my knees/elbows are unnaturally bendy, and I sometimes get joint pains that I've always thought were because of bad posture but now realise might be bc of hypermobility... do you have any advice for a scared 16yo? pointers on possibly getting a diagnosis, thoughts on if I might just be paranoid?
First of all, push paranoia aside. If you feel you have symptoms, you can (and should, if you want to) explore this. Find a doctor who has heard of hypermobility/EDS. This could take a while, but I know others have had luck with rheumatologists, physical therapists, and geneticists. If they can’t give you a diagnosis, they should be able to point you to who can.
Also, self-dx is fine! Do some research of your own. Even if you’re going to see a doctor, arm yourself with knowledge so you can best advocate for yourself. You’ve already tested your own Beighton, so you’re on the right track. Use tumblr to search for hypermobility, EDS, etc. People post articles, research papers, experiences, etc. Do any of them sound familiar? Reach out and see what you can learn.
It’s possible, as you may know, to have hypermobility without EDS. If you’ve got bendiness and some minor joint pain, you’re a pretty good candidate. Listen to your body and figure out what makes you the most comfortable. Stay hydrated and take care of yourself.
And don’t forget there’s a whole community of us out here on the internet. Find some support groups on Facebook, follow people on Twitter and Tumblr and Instagram who speak to you and your experiences. Welcome to the best group you never wanted to join.
standing up and blacking out for a few seconds is just transitioning from a cutscene to the actual gameplay
You motherfuckers need to eat salt is what that means
*blows a kiss to every disabled member of the lgbt community*
I struggle a lot with shoelaces. “Secure” pressure hurts my feet too much. Too loose and they don’t fit and I’m likely to trip over my own feet. I can’t bend down to tie them without hurting my back and hands.
Now it means that the shoes I like, my cons, my docs, I can wear a lot more.
So, yeah. These are fake laces that just clip into the eye of your shoes. It conforms to your foot shape better without squeezing it. Comes in different colours and sizes. I got two pairs for $8.
You don’t have to specifically use this page (though if you’re Aussie I’d recommend it) just something to consider that might make your life easier.
Heck, even if you have or know little kids who haven’t mastered tying shoelaces yet!
I’ve seen stuff like this before guys, definitely looks useful and for those of us who have trouble with fiddly stuff like tying shoe laces it’s worth checking out.
- they’re feeling good and theyre okay with not using it for the day - too much of a hassle to bring it along when the event is really short or involves a lot of sitting or they have to hold a lot of items and the cane would just get in the way - literally just forgetting it at the door - being tired of people asking them invasive questions about their medical history because apparently every disabled person is Completely Fine with divulging private medical information /s - wrist/shoulder hurts almost as much as legs
It’s called chronic pain and not slightly tolerable pain for a reason. Yes I am in pain. And yes it really hurts.
yessssssssssssssssssssssssssssssssssssssssssss
Coming to after syncope…
180312 // Mental hygiene. Here are some tips to keep your mind cleand and positive that helped me a lot.
Hey this sounds corny af but is really, really effective.
My Body is like:
This is a phenomenon I’ve noticed in myself for years, and I wonder if any other spoonies have noticed it too
You would think that being chronically ill would make you more in-tune with your body since you have to think all the time about what you’re doing, evaluate how much energy you have to do a thing, figure out what triggers which symptoms, have to explain stuff to doctors in excruciating detail over and over again, etc. And, to be sure, that is true for me to an extent.
But the other thing I’ve found is that when you have chronic illness/chronic pain, you get so used to tuning out the unpleasant sensations that are just a normal part of living in your body that you forget to listen to your body signaling you to do stuff? Like I’ll notice that I have to pee, and then immediately forget about it, and then like 6 hours later it reaches the point of like actual stabbing pain and I’m like oh my god I really have to go to the bathroom what the fuck how did I forget about this? Or I’ll go a long time without eating because I just… forget to notice that I’m hungry.
My body is like “hey, I need a thing” and I’m usually like “body, shhh, I’m busy”
Sometimes that signal is my nerves going “AAAAHHHH HELP SWEATER IS TOUCHING SKIN ALERT ALERT EVERYTHING IS TERRIBLE” and so me being like “wow body, shut up, we’re wearing clothes today, this is not up for debate” is 100% the right course of action. But then sometimes it’s my stomach going “yo, food is good for you, we haven’t had any in a long time” and I’m like “shhhh don’t worry about it” and then hours later I’m like “wow why do I feel so awful? Why am I shaking? OH maybe because I haven’t eaten today, lol oops, sorry about that one, body, let me immediately overcompensate by eating ALL the snacks while I wait for my dinner to be ready because now that I have noticed I am STARVING”
This can also involve ignoring other sick, either normal people sickness that should really get treated (I had pneumonia for a month before going to the doctor because “okay yeah you’re coughing I get it I have shit to do) and ignoring symptoms that don’t belong to your current diagnoses and suggest a comorbidity (for me it’s gastroparesis (probs) and endometriosis (maybe)). Is it helpful for ignoring the searing pain in my hip? Yeah definitely. But not eating or sleeping or doing Too Much or not getting important medical treatment? Not so much…
Other people do this too? It’s not just my ridiculous chronically ill ass?
Someone once said to me, “I hope the pain eases soon.” It struck me as the purest blessing that had ever been offered over my head - I hope the pain eases soon. It’s so gentle, so kind, so hopeful. So to everyone who’s hurting: I see how hard you’re trying, and I hope your pain will ease soon.
laws about minimum wage should apply to disabled people
laws about minimum wage should apply to incarcerated people
everyone deserves a fair living wage for their labor
wait, they don’t???
Not even close. Disabled folks can be paid as little as $1 an hour in some cases at whats called “subminimum wage.” Prisoners are sometimes forced to work without pay at all.
Hey, unpopular opinion, apparently. But people don’t just “have pain for no reason” doctors say this all the time (especially to women and chronically ill people) and the truth is, Thats literally not possible. Even if your pains are psychosomatic (a word I hesitate to even use because of the way its used so often) there is a reason you are having those pains whether its mental illness, abuse, etc. If your doctor consistently tells you that “well some people just have pain for no reason” get a new doctor. That’s a doctor who is not going to give a shit what your actual symptoms or experiences are.
I just wanna add to clarify the psychosomatic thing.
That word DOES NOT MEAN you’re making it up. It doesn’t mean you’re imagining the symptom. What it means is that the symptom ISN’T DIRECTLY CAUSED BY ANY OF THE THINGS THAT WOULD NORMALLY CAUSE IT.
I fought to get a PCOS diagnosis for 2 and a half years. For the ENTIRE time I was fighting, I was dealing with 3 cysts that were not going away by themselves and eventually required surgery to remove. At one point close to the end of the battle, I suddenly went blind. I was visiting my parents and was standing on the veranda looking out over the tree we had planted in memory of my dog and suddenly I got one of the shooting pains that I was quite frankly used to at that point and my vision started to go dark. It was like the sun was setting while being completely hidden behind storm clouds but it was 2pm in the middle of Summer on a clear day. Within about 30 seconds I couldn’t see ANYTHING. I was 27 years old and I was screaming for my mother.
My mum raced me to her doctor (he was a 15 minute drive away as opposed to 45 minutes to the nearest hospital) and he quickly worked out that there was nothing wrong with my eyes and what had happened was totally unrelated to them. Then he said it was psychosomatic and I freaked out, yelling that I was NOT making this up and I definitely wasn’t imagining it. Very quickly he calmed me down and said he believed me and I had misunderstood. He explained that whatever was going on with my abdominal pains (he suggested PCOS which I hadn’t even heard of at that point) had been ignored for so long that my body was starting to do things other than the normal pain response to try to draw my attention to the problem. My sight going was my body basically jumping around in front of me going “HEY ARE YOU EVEN LISTENING TO ME HELLLOOOOOOO??????”
He gave me some prescription strength painkillers and my sight started to come back as soon as they started to kick in. About 45 minutes after it started I could see well enough to walk around without help and within a day and a half I was back to normal. On top of that I finally had a scan booked to figure out what the hell was causing all the pain.
Psychosomatic symptoms are NOT imagined or fabricated or happening for “no reason”. Experiencing them DOES NOT make you a liar. It makes you someone who has been battling with something serious for so long that your own body has started to get impatient with you.
I completely agree. Thank you for sharing this.
Here's what happened: my coworker went to the dollar store on her lunch break yesterday and decided to get everyone a box of hot tamales. I LOVED hot tamales in high school but haven't had them for years for several reasons. It was such a thoughtful gesture, so I opened the box and had a handful. My stomach has been out of commission for over 24 hours. My heart rate has been elevated. I barely slept last night. Three years ago, I worked hard to cut back on caffeine and completely cut out processed sugar in the form of candy. I did this because I realized that my POTS flares were tied to my sugar and caffeine intake, and I needed to prioritize my healthy, my body, and frankly my safety. Three years without candy means that when it comes back, it will WREAK. HAVOK. I've told this coworker before that I can't do candy. That the occasional cookie or chocolate is fine, but I have to do it in moderation, with care and control. She thought she was doing something nice. She had no malicious intent. But please - if someone tells you they can't eat something, don't give it to them as a 'treat.' This isn't a diet fad thing of "oooh, candy, I'm being so BAD." This is about the health of my heart. You have no idea what that temptation is like. I failed, and now I'm hideously sick.
love this.
