120 hours with Ehlers-Danlos Syndrome

Follow me on Instagram! @AnnieElainey I caption my stories and provide image descriptions on my photo posts! 🙏 - In mid October I decided to attempt documenting how my chronic illnesses (Ehlers-Danlos Syndrome & co.) can impact my daily life for 5 days (or 120 hours). The cough I was experiencing was the aftermath of some bad congestion, those sometimes put me into coughing fits where I can’t breathe. I don’t know enough to talk about that but there is reason to believe that certain breathing problems I have are EDS related as well. Let's share hacks and relatables in the comments!
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CHANNEL DESCRIPTION
Annie Segarra (Annie Elainey) creates mainly first-person videos on introspective topics, social topics, sharing her experiences and thoughts on disability, body image, LGBT topics, gender equality, etc, as well as creative content; a variety of music/artistic media and short films. Annie identifies as a queer disabled (Ehlers-Danlos Syndrome) Latinx woman and uses she and they pronouns.

[@fatimagic1365]

thank you for continuing to put a face and give a voice to us disabled people. :)

[@theannieelainey]

🙏

[@reykaye6096]

Ooh regarding the internalized ableism question, I’ve had to take on an anti-capitalist mindset to battle that one. It’s hard because in so much of the world, people’s worth is directly linked to their “productivity.” I’ve had to do a lot of work to understand that we all have inherent worth as humans, and we shouldn’t have to “put in” to the system in order to survive!! We should just want to help everyone to survive!!! It’s a complete lack of community, and it’s driven by the way capitalism turns us all into assets. (This mindset also helps with the artist’s constant struggle of wondering, “Why do I even make art if I can’t make money off it?” Capitalism strikes again, making us feel worthless if our work isn’t profitable!)

[@86fifty]

Thank you for this - this is how I try to phrase it to myself, too, when I can remember to... I'm not sure how to even DO that sort of work, to convince myself that capitalism is wrong about us disabled people being worthless; even though I know it intellectually, it doesn't sink in. I even majored in Economics in college, partly to 'understand the enemy', partly cuz the 2008 Great Recession really fascinated me, but what I learned was mostly that economists would LOVE to learn why people do things, and how to incentivize them without unintended consequences... but that's hard to put into numbers, and numbers are what rich people like, so economists have to use them to prop up their own jobs... big ironic lol.

[@RebelwheelsNYCShow]

This must have taken a long time to record, compile and edit but it's good to create representation that shows sometimes spoons and mobility and pain are not always this constant thing. also p.s I LOVE contrapoints

[@breec3346]

15:54 same here girly! I have mental illness and chronic pain and other things and I also need to learn to be kinder towards myself and realize that it’s okay that I can’t always keep my plans or can’t always do everything! Hugs!

[@theannieelainey]

Yess!! Treat ourselves like we would treat someone we care about!! ❤️🙏

[@magnoliaskogen]

Thank you for this video. I have Multiple Chemical Sensitivity & lots of other things that result in me being stuck at home alone almost all of the time. I also feel like I can't ever get as many things done as I want to. This video helped me feel less alone.

[@michellereneaellington4986]

I am undiagnosed with a hypermobility disorder. My old Neuro thought it could be EDS. That was 13 years ago. Since then I've had a lot of other health problems, both physical and mental, since then. I mever really had the time or money to get tested. I plan for next year to be when I finally go to a geneticists to find out exactly what's causing all my health and pain problems. I'm so glad I found your channel! Thank you for being brave enough to speak out and normalize chronic illness.💙

[@adamguymon7096]

Thank You for your videos. I am grateful that you do talk about Disabilities and how they effect people. I love the fact that you are not afraid to day that you are disabled and how you bring awareness to PWD. You make me feel like I am not alone out there in the world. I have my own disabilities but I still get people that think I am not disabled and they will say things like "You moved your food one inch you can just get exercise and walk like a NORMAL Person". Your videos show me that there is nothing wrong with having a disability and that I should not be Ashamed of my Disabilities. I hope you will feel better because I know when I have bad day's it just feels like Hell. It would be nice to have a video where you can help bring awareness to people who have Undiagnosed Disabilities and how this can effect people whether it means they get care and tests they need when doctors may take one test and say "Everything Looks Normal" even know you still as a person feel like hell and struggle? Even people around you like family and friends can be very Cruel and Brutal even when they are only looking for the results that should be in the doctors Text Book. Before your videos came along on KZbin when my mom was alive and I started needing to use a wheelchair my mom was my lifesaver and the one that believed me when others would not and would call me a Faker. Again Thank You for your videos. My mom passed away as of the 16 NOV 2015. Videos like your's, Jaquie's, Izzy's and other peoples videos are grate and very Informative.

[@rhubarbarian723]

Hey! Annie did a video (i think a couple years ago?) called "On Being Sick and Undiagnosed", from before her EDS diagnosis. This was super helpful to me and might fit in to what you're looking for too!

[@86fifty]

I am newly-diagnosed with EDS, and your channel is SUCH an inspiration, for real. I've had the diagnosis for about a year now, except I feel like I haven't DONE anything about it, since I'm lucky enough to live at home with my mother and I don't have the same basic-survival pressures that other people in my situation do. 7:07 moment convinced me to leave a comment, this is SO relatable, and I never would have thought to even ASK the Internet if this was an issue for anyone, too private, right? That right there is a demonstrable good for doing a record like this! And you've given me great examples of things I can do myself, like use a stool in the kitchen - I'd have never thought of that, but it makes a lot of sense! My feet are okay for standing for about an hour these days, but the knee joints just /hate/ walking - I've used my Razor Scooter as a mobility aid to and from the bus stop before! I felt pretty creative coming up with that one! Can't drive, as you can probably imagine... Actually buying/using a wheelchair is still a bit scary to me - I'd be afraid to use it in public, like in a supermarket, because of being semi-ambulatory, I'd be afraid of being shamed for not 'needing' it? Or be looked down on as a faker or a victim or a freak... I mean, admittedly, being able to stand up out of it and slap somebody in the face is a nice fall-back plan, I suppose! I'd love to get a professional to take care of my toenails - bending my legs so far to be able to get to them for a basic nail-clipping is a real hassle. Maybe that can go on my birthday wishlist! I too suffer from coughs and colds all the freakin' time - It's early November for me now, and I've had like 5 colds in a row without a break since October 5th! That's kind of unusual, even for me... Explaining it to random bus-riders gets me comments about 'the winter crud' that seems especially bad this year... I guess I just get the same colds your 'average' person does, but with 5 times the length?? I've been thinking about looking into ordering a non-disposable, fancy, flu-mask type thing from online, probably Japan or HK, since that's where they incorporated it into fashion, and pale blue does not match my skin tone! XD

[@rhubarbarian723]

Hey, thanks so much for putting this together and sharing :) I'm also disabled and dont have any real life examples of how to navigate the whole invisible illness zone, and seeing more day to day real life stuff from you is WILDLY encouraging and reassuring to me. Literally watching this on bed rest after having to cancel a trip lol😅 I know it must have been challenging to put this all together but I truly TRULY appreciate it, so so much. Thank you :)

[@AvoryFaucette]

Love this!! It's so easy to feel like a useless lump when you have chronic fatigue in my experience and then get mad at yourself or not feel as valuable. So much empathy going out to you!

[@Lytah84]

This was an amazing video. So many things increase my suspicion that I have some form of EDS, but it's so hard to get a proper diagnosis because of fatphobia and I'm on state insurance and I'm on disability benefits. Only had them for two years but I've been disabled for the last 10 years and unable to work a regular job.

[@SaiSai-rs9hf]

Hack: tubigrip bandages and ankle brace socks, even compression stockings with no toe, can be folded to fit multiple limb places. You don't have to buy a special expensive brace for every hip, knee, ankle, wrist, elbow, finger. And every now and then, discount pharmacies have sales on the neoprene Velcro straps. You just have to ask when and wait.

[@2wesx]

This was incredibly intresting to watch. I have lots of (online) friends with various chronic conditions and its a different sort of perspective watching it rather than someone telling you about it. Thank you for this. It looked like a LOT of work to put in, so I appreciate the effort to educate people! I constantly admire your activism work and this just took it to another level.

[@truantverreaux5483]

i dont really have a diagnosis on anything physical right now because i am trying to work on it with my doctors...but i also have trouble with cooking/preparing food, it is just really exhausting, my lower back hurts a lot so standing for a while trying to prep and cook is really difficult. my primary doctor was disappointed when i mentioned i was struggling with eating healthier foods (because i am pre-diabetic) when i tried to talk about how my energy levels are just extremely low and i hardly ever have the engery to cook a good meal and gravitate towards whatever is easiest to eat she didnt seem to really respond or care about that or understand and its a bit concerning....

[@celinee.9562]

Yes it is concerning. I would be concerned about nutrition and putting nutritious food that is okay with you and your energy levels. You could buy barley or wheat powders or vegetable powders to drink with apple juice, to have your vitamins, and keep a bullet journal ( with smileys or flowers !) to make sure you are reaching your goals in term of healthy eating, like following your own rules, simple rules, like tending for one raw fruit a day, one portion of raw nuts/seeds a day, one portion of steamed/microwaved vegetables (from frozen) and/or raw veggies, and one bowl of soup a day. I am super super low in my functionnal capacity and currently i manage with one bowl of a very good soup that i like everyday, (seasonned with healthy fat that are good for us, like butter, coconut oil, olive oil, they have healing properties also for the gut and the brain) plus one raw fruit and one portion of raw vegetables (i just chew a piece of koolrabit? Or parsnip? and also a portion of nuts/seeds, and my supplement of spirullina (easier than mixing powder in a juice) I am sorry that you feel so low. I hope you can take care the best you can to feel your best. Gentle greetings from Belgium. PS : i am happy that you are saying you are looking for answers with a medical team. Hopefully you will also receive some answers from that side, about what you can do to get better. Take heart ! Xxxx

[@celinee.9562]

Choosing the diet that is best for you can be a little bit tricky ; lots of testimonies of people getting better when doing a diet change. With very low energy i would say, make sure you eat your proteins and your good fats (Omega 9 and good healthy saturated ones are important as well as the ratio Omega 6/3) your brain and your endocrine system needs it ! Also make sure you don't need to boost at least your levels of vitamin d, magnésium and vitamin c, it can really help. Doctors are not necessarily into nutrition. Mine aren't. Mine weren't trained in nutrition, at all. Eating a nutritious and tasty breakfast with proteins (savoury if that's okay) is something that really helped balancing my energy levels and sugar cravings, personnally. It seems it's a general recommandation that is good for everyone, especially when the body is exhausted. Good luck Xxx

[@celinee.9562]

I would check the functionnal capacity scales for me/cfs, you don't necessarily have this specific problem (exertion intolerance + orthostatic intolérance) but it's an interesting tool to make the doctors see where you are in your energy levels, aka functionnal capacity. If you are not able to cook you need to make them believe you and cultivate trust together with your medical team. Seek doctors that believe you and make you feel they truly are with you. I wish you well. Take care. Xxx

[@truantverreaux5483]

@@celinee.9562 I couldnt possibly afford most of those things, but i appreciate the advice....

[@86fifty]

@@truantverreaux5483 Ooh, I know about this! There's a great, free cookbook that was developed as a person's PhD thesis for how to help low-income folks eat healthier, taking into account all the life-situations most cookbooks and food-advice people don't think about, when you're on SNAP etc. It's free online as a PDF, it's called Good and Cheap by Leanne Brown. I hope it helps you, it sure did for me!

[@86fifty]

I have a laundry hack! I've only recently started using it, but it's working for me so far! I have to split up the laundry into loads based on color anyway, so I try to only do one a day. For me, there's white, black, and then colors. I have to split up the colors into red and blues sometimes. That way, I can have at least SOME clothes done, and it's a crapton less hard than trying to do like 5 loads at once. Fifth load is my hand towels and washcloths, since taking a Real Shower is a chore, and I use washcloths a lot instead.

[@chronically_me]

Thank you so much for showing what living with chronic illnesses REALLY looks like! You inspired me to my own vid on this too! Love you girl, keep up the awesome vids, I know it's not easy!

[@WapatoGreyer]

ILY! this is such an important video.

[@Alex-ge5nz]

Thank you for making me feel less alone 💕

[@86fifty]

19:00 - big relatable there with the 'counterproductive physical therapy'... My kneecaps slip side-to-side really easily, so various PTs wanted to 'strengthen my quads' and it was like... No...? They're so beefy, it's a lil scary?? I have a new one currently who's focusing more on my back, the 'posterior chain' she called it. She said I wasn't engaging my glutes when I did squats, for demonstration, the first day I saw her, which made me think about that muscle group more. Since then, I remind myself to walk /with/ my glutes more, and it actually seems to legit take pressure off of my knees, which is great. I hope it'll keep working and not backfire on me somehow! (crying grin emoji)

[@BurnTheBluestSkies]

i cannot assume to know what's best for you, because people's difficulties and needs vary, but my roommate swears up and down by her wiping device. it extends her reach and is easier for her to grip. the downside she's mentioned is hers is not very travel-friendly, and those that are cost more.

[@qmonk5108]

ily annie!!! it's amazing to hear abt all the progress you've made in getting mobility aids and diagnosises!!! I can't believe you would ever belittle the amount of stuff you do (i mean i can bc internalised ableism is a bitch but ...) the amount of work you put into daily life and your family Plus other stuff is amazing!!! I hope you continue to be kind to yourself and appreciate how amazing you are! 💗💓💕💖💗💓

[@minibus9]

I have the same sense of guilt and being upset with myself when something happens that I can't control because of being Autistic or depending on what that thing is Dyspraxic and Epileptic to

[@alisonbarker3862]

Thank you for documenting the ups and downs of 120 hrs of your life. Learnt more about POTS and EDS. [I have neither, but having a disability myself, I want to know]. Your dog is lovely and obviously loves you. I want to learn how to walk a dog with a wheelchair. Please be gentle with yourself with the things that you can't help. [And I'll try to do the same]. I'm wondering why I/we do this to ourselves and how we can stop. Ideas? Cheers, Alison. p.s. Wondering about the t-shirts and other merchandise. Where can I buy? Can I buy?

[@allisgrace1313]

Boy, just the opening of your video and oh how I can relate... thank you. And your sister is so cute ; )

[@theannieelainey]

Ahh thank you! 🙏

[@adamguymon7096]

8:08 Where is that "Tree Lim Law" when you need it most? That would mean that trees and bushes would have to be trimmed so they would not be hanging any lower than 7 feet or lower above the sidewall or curb cuts. Bushes and other limbs would not be allowed to be over the sidewalk and would have to have a 3-inch buffer between the bush/tree and the edge of the sidewalk. That would make it so people would have accessibility. 9:22 Bailey is so cute. I wish I could give a big hug and do some tug of war?

[@Totally_Glitched]

Thank you so much for documenting and sharing this!

[@susanmargaretwills6432]

Hi Annie I (would have) enjoyed ur long video... started out by back-tracking on the tiny written script - I'm a fast reader but omg give me a couple more seconds in order to read it to the bottom - then the end part with the questions just couldn't keep pace! Best Wishes for everything

[@dannylin8674]

Hi Annie i am a 45 years old living with chronic pain since 13 years ,my whole life i was told to have many different diagnostic only now after my hip replacement surgery, i have been diagnosed with EDS ,my husband has put a video together so people can understand a bit better, i was wondering if its ok to post the video here for your audience as well ,wish you all the best ,let me know ok thank ,love to you !!

[@ryce3714]

ily queen!!!!!!!!!!!!!!!!!!!!

[@flygirlhandm]

Hey Annie, have you ever been to an endocrinologist and had a 24 hour urine cortisol test?

[@m.w.kaplan447]

its so weird watching this... just like, y'know, how "fine" and healthy you look, thats how **i** look to people. even though I have fms not eds, its still like watching a video of myself. we really just be out here looking like strange healthy people lmfao. v interesting perspective. even being in my own invisible agony i still cant quite imagine yours.

[@VulcanOnWheels]

8:08 To each their own. But, seriously...can you break them off? I know I would. 14:45 I thought that Bailey was your dog.

[@theannieelainey]

Bert Visscher haha! Yes! She’s my dog, she’s family :) and no way the palm tree branches are really tough!

[@eliasarturfjellander4774]