List of the most popular hashtags for theme #HYPERMOBILITY

I’ve been going out for three days in a row. Now, the responsible thing to do would be to rest for a week. But I simply do not have the time. Why not? Because I leave to my dad on saturday for 2 weeks and I have to pack. Doesn’t take a whole week? Think again, you might not get tired after packing half a bag but alot of us spoonies do. And I want you to know that I have been planning everything since two weeks AGO. I made a to do list with everything we need to pack, but you simply don’t pack all your clothes that early, cuss you probably still want to wear stuff from it. And you probably still need half of the rest you need to pack. I made a to do list with stuff I still had to get, but haven’t gotten around to get it cuss I was too sick or the weather was too hot for me to be in. So this week I have to rest, pack and get to the shoppingmall. Wich isn’t a lot at all. But considering that I have to rest two days in total before and/or after doing a thing, it would actually take more then a week. It would take me 9 days to be exact, at least. And that’s if I fully pack in one day. I know I don’t contribute to a job you might see as usefull, but hell being chronically ill IS a fulltime job. And it’s not a fun one. • Ik ben drie dagen op rij buiten geweest. Het verantwoordelijke ding om nu te doen, is een week rusten. Maar ik heb geen tijd. Waarom niet? Omdat ik aanstaande zaterdag naar papa vertrek voor 2 weken en ik moet inpakken. Duurt toch geen week? Think again, jij word misschien niet moe van inpakken maar ik ben na een halve tas pakken om bij elkaar te vegen. En ik wil je vertellen dat ik al aan het plannen ben sinds 2 weken GELEDEN. Ik heb een to do list gemaakt met alles wat we moeten inpakken, maar daar begin je nu eenmaal geen 3 weken op voorhand aan. Veel dingen wil je nog opnieuw dragen, en de helft van spullen wil je nog gebruiken of heb je nog nodig. Ik heb ook een to do list met spullen die ik nog moet halen, maar ik was te ziek of het was te warm om buiten te raken. Dus deze week moet ik rusten, inpakken en naar het shoppingcenter geraken. Wat niet zoveel is. ⤵️

"When you look at me on a good day, you see someone young, healthy and well dressed. You do not see someone who has several pretty debilitating disabilities that impact every aspect of my life. You see the snippet of energy I will have, the desperate urge to get out and be “normal”.⁠ ⁠ Invisible illnesses are so hard for the obvious reasons, but also for the societal pressures on looking different to how you feel. Because of how I look, I push myself further than I should. I feel embarrassed coming out of a disabled toilet after my GI symptoms have gone wild, I feel ashamed and like I’m being judged, that people think I’m selfish for using a loo that’s not for me.⁠ ⁠ When wearing my disabled badge on public transport, I often don’t get offered seats - especially on the days I’m dressed well and look nice. Should I look “disabled”? What does that even mean? On the days I’m in trackies and exhausted, red and sweaty I’m more likely to get a seat. What does that say about society’s perceptions about what’s acceptable when you’re disabled? No abled should be deciding what does and doesn’t fit their paradigm of disability, it’s damaging and toxic.⁠ ⁠ Let disabled people lead the conversations, learn that disability has no face, no way it “should” be. Spend your energy that you used to speculate and judge on learning. There are many voices trying to advocate for disability, listen to them and amplify them instead of talking over them. If your disabled friend looks like they’re suffering, ask them if there’s anything that you can do to help, do they need to sit down, do they need water etc.⁠ ⁠ The more I learn about the symptoms I’ve forced myself to grin and bear, the more upset I am that I’ve felt I’ve had to do this. I will not suffer unnecessarily so as not to disrupt societies perception of how my health “should” be. The worst thing you can do is invalidate someone’s symptoms and try and debunk their disability, this reinforces imposter syndrome and makes us afraid to say we are struggling or speak out when we need help." @jessicacummin⁠ .⁠ .⁠ .⁠ .⁠ #timetodiagnosis⠀⁠ #EhlersDanlosSyndrome #hypermobility #HSD #hypermobilityspectrumdisorder #EDS #hypermobile ⁠

A lot of people only consider the physical toll that chronic illness plays on your body and miss the emotional and mental trauma it can inflict as well. Sometimes your body heals faster than your mind. And grieving for what you once were, when you felt whole, is perfectly okay. Grief is grief. And everyone does it differently. Healing is no different. Allow yourself the time to feel all of it, and when you’re ready move to the next phase of healing.Take the time necessary and don’t allow others to rush you. We are holding space for you today and everyday. You are not alone and you are stronger than you think. ➖➖➖➖➖➖➖➖➖➖➖➖ Do something kind for yourself today. Sending you extra spoons and hugs!

Anybody else wake up this morning feeling like a spoonie zombie? ‍♀️‍♂️These are the mornings I wish I could have fully caffeinated coffee. Like, a double-shot of espresso kind of morning. But, I’ll settle for decaf tea and pray for a nap later. ‍♀️ Sending you amazing warriors all the extra spoons and positive energy today. Hang in there-the weekend is just around the corner!!

DISCRIMINATION • I found out today that if you’re on disability and you’re hospitalized for over one calendar month, they “adjust” your income down to $30—yes, there’s only one zero after that three. - Because I was DEATHLY ill for seven weeks and hospitalized so that I wouldn’t die, they think your living expenses are covered because you’re in the hospital. This is outrageous because my bills still need to be paid *while* I was in the hospital! @Verizon doesn’t care if you’re in the hospital...if I want a working cell phone, my bill has to be paid. Rent has to be paid; medical bills for this exact hospitalization need to also be paid. - I’m so angry I can barely gather my thoughts, but I started this account to raise awareness about the sh** chronically ill and disabled people have to go through in an extremely ableist society. It is vulnerable to be put in a position where I literally can’t work (trust me, I would LOVE) and am at the mercy of our ridiculous government. - The idea that *disability* (which took three years and a lawyer to get!!) penalizes you because you get sick is absolutely degrading, demoralizing and discriminatory. It’s so hard to convince myself it’s worth fighting so hard for what is still a poor quality of life with no way out. My genetic diagnosis won’t go away eventually; it only continues to wreak more havoc over time. It’s not like squeezing me financially and adding a ton of stress is going to make me get a job because I can’t work right now under any circumstances. Please feel free to share this post because I think it’s so important that people understand how barbaric our system is. ⭕️ ETA: I’m in the USA...CA specifically, but it’s a federal program, so state doesn’t really matter.

How to be disabled for contemporary society, inspired by @vqueer. 1. Be small. Take up little space in public and don’t noisily assert your rights — save that for social media, where people can praise your inspirational thoughts without actually having to take action. Let keyboard warriors reign. 2. Be grateful for the “lessons” of your disability. Reduce it to bite-sized quips about strength that abled people can apply to their workplace issues or relationship conflicts. Never be raw about the injustices and cruelty you face, and certainly not the pain and other symptoms associated with chronic conditions - unless you spin that hardship into a Pinterest-worthy quote a suburban mom can turn into her latest Etsy listing. People want a filtered narrative that allows them to feel socially aware without needing to look too introspectively at their own beliefs. 3. Post photos of your scars, surgeries, and medical devices so the public can titillate over your bravery, but never broach the reality of our larger social issues that make even getting out of bed an act of bravery. Forget that 40% of jail inmates have disabilities while only 25% of the population at large does. Don’t mention that it’s legal to pay people with disabilities below minimum wage, or that our poverty rate is 47%. Give the people what they allow themselves to want so we can make at least some kind of impact on the world, so we don’t highlight our injustices only to be told we’re asking for too much. Follow these rules if you want to stay silenced. Break them if you’re ready to fight for radical change, possibly at the price of your humanity.

I don’t know who made this, but I thank you. •• •• #endometriosis #endostrong #endosisters #endosister #endometriosisawareness #endowarrior #endobelly #endopain #endobloat #chronicillness #chronicpain #chronicallyill #spoonie #invisibleillnessawareness #invisibleillness #fibromyalgia #ibs #constipation #pelvicfloordysfunction #interstitalcystitis #interstitialcystitisawareness #gastroparesis #hypermobility #mentalhealth #depression #anxiety #ptsd #butyoudontlooksick #livingwithendometriosis

Burnout was recently defined by the World Health Organisation as a “Syndrome” (not a medical condition): Burn-out is defined in ICD-11 as follows: “Burn-out is a syndrome conceptualized as resulting from chronic workplace stress that has not been successfully managed. It is characterized by three dimensions: - feelings of energy depletion or exhaustion; - increased mental distance from one’s job, or feelings of negativism or cynicism related to one's job; and - reduced professional efficacy. Burn-out refers specifically to phenomena in the occupational context and should not be applied to describe experiences in other areas of life.” I would think that people working & living with chronic illnesses may be more likely to experience burnout due to factors impacting their already depleted energy reserves and possible reduced professional efficacy. Have you experienced occupational burnout? What have you done to cope? Image credit: @journey_to_wellness_ Mental Health Monday ⭐️⭐️⭐️ #mentalhealth #hypermobility #hypermobilityspectrumdisorders #theehlersdanlossyndromes #hypermobileEDS #positivehelpforhypermobility #ehlersdanlos #edsawareness #eds #loeysdietzsyndrome #loeysdietz #marfansyndrome #hypermobilityconnect #spoonie #chronicillness #pots #potsie #dysautonomia #chronicpain #chronicfatigue #mybendybody #hopeforhypermobility

Я вчера написала, что живу с синдромом Элерса - Данло и народ бросился у себя его диагностировать в личке и нет на основании того, что у него локоть гнется и колено болит месяц) Ребят, серьёзно, вам этого не надо. Существуют различные типы гипермобильности, их полно. Далеко не всегда это мешает жить и патология. У любого человека без всяких синдромов нога после травмы может болеть и полгода, потом пройти. Это не история про Элерса - Данло, когда боли с нами всю жизнь/десятки лет и не всегда возникают от травмы, иногда - спонтанно. Пройдетесь по хэштегу #zebrastrong и посмотрите. Кому-то и рукопожатия достаточно, чтобы потом все вправлять Поэтому я решила рассказать подробнее про синдром. И заодно показать вам на фото свои локти честно, без фотошопа, раньше я это скрывала. Ну, раз уж родилась с этим, пора начинать с этим и жить. Синдром Элерса-Данло (са) – редкое наследственное заболевание, которое связано с дефектом в гене, отвечающим за нормальный синтез коллагена. Это история про гипермобильность суставов, изнурительные скелетно-мышечные боли, постоянные подвывихи/вывихи суставов (я живу с хр. подвывихами 2х суставов) и раннее начало остеоартрита (у меня 3 сустава) . При нем же хр. усталость, грыжи, пролапс митрального клапана, синдром постуральной ортостатической тахикардии (СПОТ) (обмороки, сердцебиение, тошнота, усталость, головная боль, головокружение). Если я бросаю тренироваться, я не могу нормально ходить без вспомогательных инструментов. Также мне приходиться принимать серьёзные рецептурные препараты с побочными эффектами, потому что это состояние не позволяет мне нормально жить и работать. Гипермобильность суставов (не равно СЭД) оценивают по шкале Бейтона. 5 баллов и более у взрослого определяется как гипермобильность (не СЭД). Показала на видео, листайте. Пост тут для настороженности, тк это не лечится. Все, что у нас есть - ЛФК, обезболивание, лечение депрессии и прочие симптоматические/паллиативно методы. Если вы нашли у себя какую-то проблему, которая снижает качество вашей жизни, не нужно ставить себе диагнозы самостоятельно, обратитесь, пожалуйста, к профильному врачу. #ehlersdanlos #zebrastrong #hypermobility #yoga #йога #heds