#EhlersDanlos

[chronicillnesshumor]

I uploaded a new t-shirt and mug design on Etsy [ https://tinyurl.com/3kcz9nmu ]

[harmoniousworld]

I'm just gonna let it all out on here, because I don't have anyone I can talk to about this.

I feel like I'm about to die, to put it bluntly. My illness has hit such a high peak, and I'm on the summit but can't find a way down. I feel trapped at the peak... I'm at the point of no return. The final chapter. The epilogue of my life.

My heart, lungs, and vascular system are all failing. My body is failing me. I think I have a blood clot in my right leg. I've been in bed for about 15 days now. My heart is so weak. I can't breathe properly. I am near-syncope at all times, and it's made worse by minimal movement. I can hardly keep my eyes open because they hurt so bad. I'm fighting just to type this on my phone. My head is killing me 24/7. I'm plagued with many other ailments, like hyperacusis (noise intolerance), photophobia (light intolerance), vertigo, nausea, brain zaps, chest pressure/pain, ear pain, migraine 24/7, restlessness, and so much more. The head pain and head pressure is relentless and debilitating. My neck and spine are causing me major issues. I can't sleep. I feel like I'm breathing through a straw.

Is this the end for me? I need to pick myself up out of this flare. Or is it even a flare... what if this is my new normal? I can't accept the latter, because I'm truly in a metaphoric torture chamber. 😫

[flamegoddesslee]

Revenge of the gaslit patients! I feel hopeful that this growth of researchers with EDS will lead to better diagnoses, better treatments, better outcomes. All while I am in so much pain right now! #EDS #edsawareness #zebra #zebrastrong

[thechaoticbookwyrm]

Most people think of getting sick as a part of life. You get sick, you go to the doctor, take your medicine, and like “magic” you get better, and afterwards you go on with your life as if nothing happened. Those few sleepless nights with stuffed noses, stomach aches, and body pain are nothing compared to the long, healthy life that most of them will live. ☆ That’s the funny thing about chronic pain and chronic illness. You’re healthy… until you’re not. Some days you have more energy, or more spoons, and others, you don’t. Last week I was staying in bed every day until 2pm because I wasn’t sleeping at night, wasn’t feeling well, and played it off as “staying up all night reading” to my family because, I am a bookworm, and that is believable to the people I love. I almost dropped out of NaNoWriMo this year because, I have just felt like absolute shit. ☆ I also have a huge week ahead between an Allergist appointment, having to go to Rush on Tuesday, a DEXA scan Wednesday, and more that I haven’t even called to set up yet. All the while my little brother turns 21 on Monday, and I NEED to get my shit together enough to make his birthday pie, and the casserole that he asked for because this is his 21st birthday, and I cannot drop the ball here. Our mom passed away in 2020, and she can’t be here to make it a good birthday so I HAVE to. ☆ I am fucking STRESSED. ☆ #EDS #EhlersDanlos #Stress #Insomnia #Depression #ChronicIllness #ChronicallyIll #Insomniac #Spoonie #SpoonTheory #POTS #ChronicPain #CRPS #InvisibleIllness #ButYouDontLookSick #Disabled #DisabilityAwareness #AuDHD #ChronicPainAwareness #DisabledCreator #MCAS #PTSD #Dysautonomia #InternationalDayofDisability #MentalIllness #nanowrimo #aspiringauthor https://www.instagram.com/p/CluFGucv7Bc/?igshid=NGJjMDIxMWI=

[theremightbecupcakespodcast]

Talking about where I have been, plus: From the Pantry, originally episode 19, to honor the recent eclipse: In which Carla starts with Dolores Claiborne and Gerald's Game--Stephen King's planned In the Path of the Eclipse series—and explores folktales used to explain solar eclipses. It gets weird.  Recommended and referenced reading: Dolores Claiborne by Stephen King https://bookshop.org/a/6560/9781501143809 Gerald's Game by Stephen King  https://bookshop.org/a/6560/9781501144202 Scarecrow Gods by Weston Ochse  https://www.amazon.com/Scarecrow-Gods-Weston-Ochse/dp/1929653956/ Seal Team 666 by Weston Ochse hardcover at Bookshop:  https://bookshop.org/a/6560/9781250007353 / ebook at Amazon: https://www.amazon.com/SEAL-Team-666-Weston-Ochse-ebook/dp/B0085UCZLE/ Dante’s The Divine Comedy: Inferno, Purgatorio, Paradiso—my recommended translation is by Robin Kirkpatrick, a leading expert on Dante. The meticulous notes are superb. This is the version translated by Kirkpatrick and illustrated by Eric Drooker: bookshop.org/a/6560/9780143107194  Hozier, “Unreal Unearth”: https://open.spotify.com/album/3gF9KIynrJaC80HbVayPMx https://music.apple.com/us/album/unreal-unearth/1687585357 How to Support Cupcakes: Audible: audible.com/ep/creator?source_code=PDTGBPD060314004R Care/Of Vitamins: https://takecareof.com/invites/chr4bw Substack: http://theremightbecupcakes.substack.com Patreon: https://www.patreon.com/theremightbecupcakes and please visit my lovely sponsors that share their ads on my episodes.  Where to Find Cupcakes: Substack: http:/theremightbecupcakes.substack.com Facebook Page: https://www.facebook.com/theremightbecupcakes Facebook Group: https://www.facebook.com/groups/theremightbecupcakes Instagram: @theremightbecupcakes and @carlahaunted Reddit: https://www.reddit.com/r/theremightbecupcakes Goodreads: https://www.goodreads.com/group/show/804047-there-might-be-cupcakes-podcast-group Contact: carla@theremightbecupcakes.com

[uniquelysamantha]

Painsomnia

It’s been days of little to no sleep from painsomnia. Oh, just take meds. Meds cause terrible side effects. I smile. I laugh. I get stuff done. I don’t want pity, so I don’t say anything to anyone. I don’t want to complain because, truthfully, no one really likes a complainer. The frustration and pain fester until I can’t take any more. Then I finally cry, at night, into my pillow, trying not…

[panda-grenade]

A little explanation of Ehlers-Danlos Syndrome for those who don't know about it.

[aspoonfullofsalt]

Please enlighten me #EDS #EhlersDanlos #EhlersDanlosSyndrome #hEDS #HypermobileEDS #HypermobileEhlersDanlosSyndrome #Hypermobility #Hypermobile #ZebraStrong #EDSZebra https://www.instagram.com/p/Crmgpn5ravN/?igshid=NGJjMDIxMWI=

[sniiboo]

Today is rare disease day let your loved ones with a rare disease know they are loved. In medical school doctors are told "When you hear hoof beats think horses not zebras." This means to think of a more likely cause over something thought of as farfetched or rare. This makes it quite hard for anyone with one of these diseases to be heard and taken seriously as they are often shoved aside as hypochondriacs. I remember always being called one by everyone including friends and family. I remember starting to believe them. I remember being afraid of stairs for a long time because I fell down them, I remember these incidents leading to me being called clumsy. I remember being in physiotherapy in grade 1, I remember wearing high tops shoes because my ankles were "weak" and gave out. I remember my parents thinking I faked stomach aches because I liked the taste of Pepto. I remember still falling down stairs as a teenager and being told I was doing it for attention. I dont need to remember the stigma and comments like being called lazy because I still face them.. but mostly I remember the struggle to find out what was wrong with me and the relief of finding out I wasnt crazy because Not everyone gets to win the battle of seeking answers. . . . . . #eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome https://www.instagram.com/p/CpOvh_5D1XH/?igshid=NGJjMDIxMWI=

[thesporkwitch]

Ehlers Danlos is a spectrum. Some can go their whole lives without realizing they have it and some are forced to stop & acknowledge it, every moment. My heart aches for that kid, who didn't realize that their body was calling the shots, for so long. My heart aches for those who don't have a proper diagnosis, even still and may be blaming themselves for their lack of productivity. While there are MANY valid reasons why many may not be able to produce the days they wish to, my view point is riddled with hourly dislocations, nerves on fire, a disease that apparently wants me to crumble & nervous system issues that challenge my every move. A huge fear of mine is people won't believe me, or they will think I'm attention seeking. When your day is ruled by levels of pain that you *HAVE* to control, because life cannot be lived by rolling on the ground, screaming, it's difficult to explain to others that you have an aggressive disorder. They either think you're faking because you aren't rolling, screaming on the ground, or they think you're attention seeking because you are. It feels like a trap some days because one day I'll be able to walk and the next it will feel like I've been zoomed over, by a herd of llamas.So the only thing you can do, is just lay down. Is cry. Is hold your animal baby close as they let you sob your sadness into them, because it's been two hours and you *STILL* can't get your neck back into place. The last week has been like that for me. Sadly we can't go to the doctor every time something hurts horribly. And when you're I'll, you try EVERYTHING to not be. So please just know that you are seen, valid and important! It's ok to not be ok. #elhersdanlossyndrome #eds #zebrastrong #hypermobile #chronicillness #nospoons #yourenotalone #ehlersdanlos https://www.instagram.com/p/CosvulWSWNp/?igshid=NGJjMDIxMWI=

[medicalmysterysciencetheatre]

Food Intolerance, Diet, and Hormones with Lipedema

Facebook Group “Food Intolerance and Lipedema” founder Cheryl Scoledge goes into the information she has learned through her exploration and experiments with her personal illness. 

[chronicillnesshumor]

Comic by Mushroommovie. I changed the words to fit chronic illness / autoimmune issues

[jinxtrickster]

Bunnies are here and ready to spread cheer! They will soon be available at @merccreations.9292 Or you can order through direct messages. #kawaii #bunny #bunnies #pastelfashion #kawaiifashion #kawaiifashion #kawaiishop #cuteshop #amigurumi #plushie #crochetersofinstagram #crochet #yarnaddict #crochetaddict #makeitpremier #michaels #chronicillness #invisibledisability #ehlersdanlos #potssyndrome #disabledartist #invisibleillness #invisibledisability https://www.instagram.com/p/CofJlWrOroy/?igshid=NGJjMDIxMWI=

[orthopedicsurgeon2]

Shoulder dislocations

The shoulder is the most moveable (adaptable) joint in our body. It causes you to lift your arm, to turn it, and to reach up over your head. It can turn in numerous ways. This more noteworthy scope of movement, which is absent in some other joint can be that as it may make the shoulder vulnerable to disengagements. Shoulder insecurity (disengagement) happens when the leader of the upper arm bone is constrained out of the shoulder attachment. This can occur because of unexpected damage or abuse.

When a shoulder has disjoined, it is defenseless against rehash scenes. At the point when the shoulder is free and sneaks out of spot over and over, it is called interminable shoulder unsteadiness. Our shoulder joint resembles a ball (the upper finish of the humerus bone) and attachment (glenoid). The ball is bigger than the attachment. This makes our shoulder is the most adaptable joint in the body, enabling you to toss balls, lift overwhelming articles and connect practically any way. The labrum is a ring of extreme and adaptable tissue on the edge of the glenoid. It appends the glenoid to the container and makes the glenoid attachment more profound, consequently making shoulder separation more outlandish.

[thechaoticbookwyrm]

If you know me, then you probably know that for the past 6-months I’ve been using the Finch self-care app. While, I will be making a full review of the app, I just wanted to share with everyone what my birb had to say after their adventure today because, I think it’s great. , I was just complaining that my life feels like a Grey’s Anatomy crossover, and that I would rather it be a House crossover instead. The irony is killing me. ☆ #EhlersDanlos #Stress #Insomnia #Depression #ChronicIllness #ChronicallyIll #ZebraGang #Insomniac #Spoonie #NoSpoons #SpoonTheory #POTS #ChronicPain #CRPS #InvisibleIllness #ButYouDontLookSick #Disabled #DisabilityAwareness #Finch #FinchSelfCare https://www.instagram.com/p/ClZ2m_fL8Me/?igshid=NGJjMDIxMWI=

[zirconiumpants]

For a long time I've been on my high horse about "oh tiktok didn't diagnose me, I'm not like other people, the algorithm just happened to guess a bunch of stuff that I already suspected was wrong with me! I already knew before it told me, it's old news..."

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Except Maybe The EDS Thing...