#ehlersdanlos | Explore Tumblr Posts and Blogs

chronicillnesshumor · 15 days

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Chance of Pain 100% [ On Etsy as a tee, hoodie, and mug: https://tinyurl.com/yke4kcth ]

#chronicpain #chronicillness #fibromyalgia #heds #ehlersdanlos #rheumatoidarthritis #spoonie #spooniehumor #chronicillnesstshirt #chronicillnessmemes #spoonielife

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harmoniousworld · 1 year

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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. 😫

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flamegoddesslee · 1 year

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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

#ehlersdanlos #ehlers danlos zebra #zebra #ehlers danlos life

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thechaoticbookwyrm · 1 year

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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=

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diagnosed-weird · 2 years

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May is around the corner! Please support DiagnosedWeird, we are fundraising for The Ehlers-Danlos Society on JustGiving for EDS/HSD Awareness Month. https://www.justgiving.com/team/DiagnosedWeird #ehlersdanlossyndrome #ehlersdanlos #EDSAwarenessMonth #myedschallenge #hypermobilitysyndrome https://www.instagram.com/p/Cc53w2JJgLr/?igshid=NGJjMDIxMWI=

#ehlersdanlossyndrome #ehlersdanlos #edsawarenessmonth #myedschallenge #hypermobilitysyndrome

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caleighmiller · 2 years

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I have never been one to post bikini pics because I my body has been weak and messed up for so many years and I just never felt comfortable. Also, I just never have a need to wear one! But today I decided just to put one on and say how proud of myself I am for how far I’ve come. I’m finally the healthiest I have ever been! Working out every day, I’m able to eat a much wider variety of healthy foods now. I don’t care about the scars on my belly or my legs and I’m learning to accept the loose skin all over my body from my EDS. I am strong and happy!! 👏🏻🥰💕 • • • #wednesday #happywednesday #selfie #mirrorselfie #smile #bikini #bikinigirl #bikinilife #bikinibody #thisisme #scars #healing #eds #ehlersdanlossyndrome #ehlersdanlos #proud #strong #recovery #fitness #healthy #everybodyisabikinibody #loveyourself #beautiful #pretty #happy #grateful #chronicillness #inlove #love https://www.instagram.com/p/CgzyaSFO_vQ/?igshid=NGJjMDIxMWI=

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uniquelysamantha · 4 months

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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…

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#chronicpain #disability #eds #ehlerdanlossyndrome #ehlersdanlos #life #pain #painsomnia

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panda-grenade · 6 months

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

#eds #chronicillness #chronicpain #spoonie #ehlersdanlos #invisibleillness #pots #dysautonomia #hypermobility #ehlersdanlosawareness #chronicfatigue #butyoudontlooksick #edsawareness #zebra #ehlersdanlossydrome

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aspoonfullofsalt · 1 year

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

#eds #ehlersdanlos #ehlersdanlossyndrome #heds #hypermobileeds #hypermobileehlersdanlossyndrome #hypermobility #hypermobile #zebrastrong #edszebra

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sniiboo · 1 year

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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=

#eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome

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thesporkwitch · 1 year

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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=

#elhersdanlossyndrome #eds #zebrastrong #hypermobile #chronicillness #nospoons #yourenotalone #ehlersdanlos

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chronicillnesshumor · 26 days

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Thank you to edsmemes00 on Instagram for the funny meme

#eds #ehlersdanlos #chronicillness #chronicillnesshumor #jointshurt #rheumatoidarthritis

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harmoniousworld · 1 year

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Hello, all! This is my very first blog post to Tumblr, after being a long-time WordPress user! I have yet to pick a theme for my blog, but I’m going to start with health/illness/disability. I don’t want those topics to “define” me, but I want to share the struggles. I may eventually shift the theme of my blog, or maybe take on a few themes in this blog. I just wanted to share my story... my journey through life in general. I don’t like platitudes or false inspiration, so you won’t be receiving many inspirational sayings from me. I’m optimistic, for sure, but when it comes to this illness and disability, I’ve learned to be more realistic.

I have a blog dedicated to my illness on WordPress, but I want to start fresh with a new perspective. What’s weird is that writing about my illness actually makes me frustrated. That’s why I mentioned that I may end up shifting focus on this blog. :)

I am actually typing from a wireless keyboard without actually looking at the screen. In fact, my screen is turned fully off. I will have to have my husband edit this for me when I’m done. He’s already busy enough, but if it edit this myself, it’ll defeat the purpose of me using the wireless keyboard: to avoid having to look at screens. I’ll be getting into WHY I can’t / mustn’t look at screens in my future posts!

For now, I just wanted to give more of an introduction.

I’m almost 40. I am suffering. I don’t have much in life. This blog may be the only thing that’ll keep me afloat.

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medicalmysterysciencetheatre · 1 year

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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.

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#lipedema #chronicillness #dercumsdisease #ehlersdanlos #eds

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thechaoticbookwyrm · 1 year

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Total vent here. (No hate to OP because they are 100% spot on.) My whole life I always felt different. My concerns were chalked up to “growing pains” that I was just clumsy, or a klutz, and that’s why my balance was off and ankles roll constantly. (How quirky.) That I bruise so fucking badly just because I’m pale, and that getting some sleep, sunshine, and taking a multivitamin will help. I wasn’t quirky. I was SICK. I have genetic conditions and abnormalities that come with prices, and vices, and put me in the place of mental and physical crisis CONSTANTLY. And it’s not my fault… losing weight won’t help. Yoga, essential oils, all that bullshit CANNOT fix me. So please be patient, don’t tell me to “get some sleep” or laugh that the reason I’m tired all the time is because I’m lazy, or up on my phone, or reading. If I could sleep, I would. I would LOVE to get some sleep but that’s not always a viable option. I am not a failed horse. I’m a zebra. 🦓 #Autism #EDS #EhlersDanlos #Stress #Insomnia #Depression #ChronicIllness #ChronicallyIll #ZebraGang #Insomniac #Spoonie #NoSpoons #SpoonTheory #POTS #ChronicPain #CRPS #InvisibleIllness #ButYouDontLookSick #Disabled #DisabilityAwareness #ActuallyAutistic #ADHD #BabeWithMobilityAids #DisabilityEducation #ChronicPainAwareness #SpoonieLife #ChronicPainLife #DisabledCreator #MCAS #PTSD #Dysautonomia #InvisibleDisability #SickAutoimmuneDisease #MentalIllness https://www.instagram.com/p/CkT99ZRJtkw/?igshid=NGJjMDIxMWI=

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jinxtrickster · 1 year

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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=

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