#Hypermobile

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Today is my favorite humans birthday. I’m so thankful you’re my person and forever grateful of everything you do for us. I’m thankful you roll with the punches and go with the flow and let me feel like I’m calling most of the shots. I’m thankful for your love, and patience, and compassion. Your constant ability to adapt and how you never let me feel like my health or disability gets in the way of doing life. Thank you for being so amazing, my constant adventure partner, and the best wife I could ever ask for. Happy birthday 🎂🎁🎉 I love you 😘• • • • • • • • • • #hbd #lilchickenwing #010617 #ehlersdanlos #ehlersdanlos #ehlersdanlossyndrome #eds #heds #hypermobile #pots #potssyndrome #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #disability #disabilityblogger #disabledandcute #dysautonomia #zebra #spoonie #spoonielife #butyoudontlooksick #invisibleillness
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Hey! So I'm starting this account to hopefully connect with others in a similar boat to me, vent my frustration on living with chronic illness, and raise a bit of awareness. So I'm an 18 year old girl from Ireland, and I'll post mainly about Ehlers Danlos Syndrome and other EDS related issues. There might also be the odd mental health post. But anyways, enjoy this picture of my cat until I next upload! #eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicpain #chronicallyill #pots #potssyndrome #gp #gastroparesis #ibs #hypermobility #chronicfatigue #hypermobile #mobilityaid #disabilities #zebra #zebrastrong #spoonie #mentalhealth
PEM hasn't hit from yesterday yet, so I'm getting a dog walk under my belt...if my body's gonna be hell anyway, I might as well get another enjoyable activity done 😅 After the walk Lyle's gonna go into town & get in some nausea-friendly food & extra painkillers...advanced planning 😬 #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #spd #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness
Ehlers-Danlos Syndrome is a turd of a disease. There is no system in the body it doesn’t touch. These swollen knees, aren’t an uncommon thing in my life. It’s so easy just to write them off, barely paying them real attention because on the grand scheme of things they aren’t that bad. Except, they are.. they hurt.. they just don’t hurt as much as my ribs, my guts, and don’t take up so much room as my nausea. There feels like there is only so much you can feel. My specialist team talk to me how patients like me have their hypothalamus overwhelmed by the endless signals of pain and discomfort we feel. Then our hypothalamus tires out and no longer knows what is important, and what isn’t. Letting through things that shouldn’t get through etc. These knees aren’t the result of exercise or labour. They are the result of sitting still writing all week, in a comfy position which is with my knee bent in a cross leg or kneeling. They are the result of sitting. EDS fcking hurts. Sometimes it hits me just how normal pain has become, when I look down and my knees are bright red and bulging, and it doesn’t even really shock or phase me. It’s the apathy to my swollen painful knees, that really shocks me. Normal shouldn’t have to look like this. My knees are a reminder that we really have no idea what other people’s normal looks like, and that we just need to practice patience, love, and care when we deal with them. We do not know what they have had to make space for in their reality, not because they want to, but because they have to. #eds #edsawareness #ehlersdanlossydrome #edssociety #ehlersdanlossociety #zebrastrong #fragilebutunbreakable #gastroparesis #digestivetractparalysis #hypermobile #ehlersdanlossyndromeawareness
Piss off!!!! It's so rainy and cold already! I hate autum and I hate winter. I hate it! Seriously though autum leave and take your friend winter with you too. I always feel so much better in the warmer weather and when the cold comes my bubble is burst and I get a harsh reminder that I'm only this well part of the year! . . . . #eds #ehlersdanlos  #nhs   #jointhypermobilitysyndrome #hypermobility #hypermobilitysyndrome #hypermobile   #zebrastrong #spoonie #medicalzebra #dysautonomia #ehlersdanlosawareness #chronicillness #chronicpain #myalgicencephalomyelitis #chronicfatigue #chronicfatiguesyndrome #posturalorthostatictachycardiasyndrome #spooniewarrior #disabled #disability #disabilityawareness #invisibleillness #butyoudontlooksick   #edswarrior #disabodyposi #wheelchair #wheelchairaware
6+ years ago, before the progression of my disability, I had a boots and chucks collection that was pretty badass. It rivaled few. I was never one to spend money on clothes or accessories or makeup, but damn did I love a good pair of studded boots. They were the main pillar of my outfit and expression. Autumn made me so so excited bc, even though I wore my boots year round, autumn was. the. season. . Fast forward slowly as my disability took over. The first to go were boots. Then sneakers. Then slides. Then sandals with a thick band. I can only wear flip flops now. Even in the snow. FLIP FLOPS. Year-round. Every day. I never wore those even when I could wear whatever I wanted. It's just not my style. But thanks to my erythromelalgia, severe contracture and disfigurements; I can't fit in them, can't have material touching my feet, and they trip me when I try to get from A to B without my chair. . Today I'm being honest about the sadness I have about this loss. For 6 years I've been bottling up all the pain and sadness my disability has brought to me. It's in part why I made this account. To finally be HONEST. To be VULNERABLE. To be AUTHENTIC..... real.....transparent....whole. To stop wrapping everything up in a pretty little inspirational bow and making it palatable to listeners. It gets hard man. . So here's my heart, on yknow, boots ;) You never knew they could be such a weak spot huh? ;) . 👞♿👟 . . . . . . . #disability #disabled #chronicillness #chronicpain #ehlersdanlos #ehlersdanlossyndrome #EDS #hEDS #hypermobility #hypermobile #HSD #dysautonomia #POTS #mastcell #mastcellactivation #MCAS #MCAD #erythromelalgia #manonfiresyndrome #contracture #disfigurement #spoonie #spoonielife #zebrastrong #chronicillnesswarrior #shoes #boots #disabilityfashion
🍁🍂FIRST DAY OF FALL🍂🍁 🌧💧🌪🌬 It has been in the upper 90's all week & today, it was a rainy, windy 65° in Arkansas. After a very hard week of hospital procedures that resulted in over half of the week being without any food, I am feeling weak & shaky. It's the first day of attempting any exercise, certainly any inversions. For the past 2 1/2 years of being on my own with two of my daughter's & being away from my oldest daughter who's traveling/living in Argentina, I have felt that I'm running against the wind. It often feels like an uphill sprint with my medical issues that have gotten exponentially worse due in part, to stress. Even so, I am a Mom, so it's in me to fight to stay as healthy as possible. As this song says "I'm older now but still running against the wind." #namaste #hypermobile #porchyoga #musiclover #rain #yoga #yogachallenge #spoonieyogatribe #iloverain #aquarius #ehlersdanlossyndrome #rare_mutant_fighting_to_survive #yogaeverydamnday #fitover40 #goodvibesonly #naturelover #firstdayoffall #fall #stretch #fighter #yogareposted #getoutside #exerciseoutside #bestrong
This is chronic pain awareness month! My bendable, flexible, hypermobility should make me feel like #elastagirl or #plasticman , it really doesn't. I am one of the 90% of elhers danlos syndrome sufferers that have chronic pain. Look around you This month..at coworkers, friends, family. We all know someone who sufferers from a chronic pain condition. Do something kind for them this month! Make their day a little less painful by brightening their day. photo cred: @geof_hutton #chronicpain #chronicpainawareness #chronicpainawarenessmonth #eds #elhersdanlossyndrome #congenitalheartdefects #arthritis #epilepsy #pancreatitis #sphincterofoddidysfunction #transformedmigraines #bikinigirl #diaryofabikinigirl #bikinifit #bikinicompetitor #heartofavalkyrie #focalpointphotography #redhead #realredhead #redhair #beach #hypermobile
And the reality of going out today 🙄 #painsomnia , utter exhaustion, #brainfog ...it was still worth it. But this is the part of our lives ableds never see. Peeps with invisible disabilities only go out when they're up to it, yet we're constantly being told #butyoudontlooksick ...that's because when we're outside, we're at our peak!! You miss our worst symptoms, our most intense pain, our hardest struggles...so please trust us when we say we're as ill as we say we are 🙄 Now please god let this shit ease so I can at least get some sleep! #pandaeyes #eyebagsfordays #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness #nonbinary #transgender #trans #genderqueer #queer #dallydeadeyes
We had a bit of a waterbead explosion in class 🤦🏻‍♀️ my poor grape 🍇😢 lesson here - waterbead stim toys are maybe not the best fidgets to use in lesson 🤦🏻‍♀️ luckily my tutor was really good about it 👨🏼‍🏫• • • • • #autism #autistic #autist #aspergers #aspie #ASD #autismawareness #autism #aspergerssyndrome #asperger #anxiety #depression #chronicillness #raredisease #zebra #spoonieproblems #invisibleillness #disability #edsawareness #awareness #chronicallyill #edsawarenessmonth #medicalzebra #hypermobile #hypermobility #aspienaut #wrongplanet #wrongplanetsyndrome #spd
Pics from my day, rarely get pics of me & Lyle together haha 😊 I had suuch a nice time! We had a really great day. My parent's battery ran flat on their car though, & now they can't stop on the way home or they'll be stuck 😂 I'm really glad I got to do today. Tired & seizey now, payback's gonna be a bitch. At the end I was taking a few bits out to their car (30ft away?) & my body said hell no...I couldn't breathe, I was super dizzy. I had to sit on a wall, my dad noticed and came over to help. This day is worth fallout though 😊 #milkshake #milkshakes #family #dayout #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness #nonbinary #transgender #trans #genderqueer #queer #transmasc
Seeing the Glenfinnan Viaduct (AKA Harry Potter Train) was a bucket list moment. Having the best time in bonnie Scotland with this bonnie lass 🚂
Well today has been amazing - Chinese Ministry is so fun! I did 5.5 hours today and although I am incredibly happy I am also in an extreme amount of pain 😅😅 I am officially 90% through my hours though, not many to go! Time for a nap I think 💕💕 *** #chronicallyillbutchronicallychill *** #chronicillness #chronicallyill #hypermobile #hypermobility #eds #heds #hypermobilitysyndrome #jhs #hypermobilitydisorder #disability #ehlersdanos #jointhypermobility #hypermobilityawareness #vegetarian #vegan #veganideas #veganrecipes #vegetarianideas #vegetarianrecipes #gym #gymmotivation #fitness #fitnessmotivation #healthyfood #healthylifestyle #healthyeating
TW PIC 7 ONWARDS, DEAD SEAL! Had a really good day so far! Very tired but doing better than expected, thank you chair for allowing me to enjoy a normal day out!! 😅 Finley's being a star & it's always nice to see how infatuated my parents are with him hehe 😃 My dad loved his pressies & we had a really nice walk along the coast. We did see a dead seal though, which was crazy!! Now we're off out for tea 🙂 . #family #dayout #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #spd #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness #nonbinary #transgender #trans #genderqueer #queer
I got 6hrs sheep last night thanks to bloody Kasper 😑😅 Great for a day where I actually have plans 😌 Because I haven't done anything for the last few days I'm hoping I'll have enough energy to muddle through though...see this is why I don't leave the house on the lead up to plans 😂 I did clean out the bird cage & make some puzzle feeders for the freezer whilst I couldn't sleep...Lyle was not impressed when he found out, in case I hurt myself & he slept through it. But it's a little bit less for him to do today 🙂 My hair at the sides is so poofy atm, I can't wait for it to grow out 😂 #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #spd #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness #nonbinary #transgender #trans #genderqueer #queer
So my aim this year was to do more. I love music so really it just meant seeing more artists. My year started with Gaga (I was very lucky) and last night was Kylie. Possibly the campest night of life. I’m exhausted but I’m exhausted even after a day around the house so I’m making memories. I hope you’re making some too. . . . #hypermobility #hypermobilitysyndrome #eds #hypermobile #brainfog #cfs #insomnia #hms #hms #ehlersdanlossyndrome #jointhypermobilitysyndrome #medicalzebra #zebras #hearhoovesthinkzebra #electriczebra #bloggerlife #bloggervibes #wellbeing #wellbeingblogger #healthylifestyle #healthblogger #healthblog #invisibleillness #notalldisabilitiesarevisible #wellbeingblog #bendy #spoonie #spooniewarrior #makingmemories
Last call for my Hypermobility workshop! Join me this afternoon as we discuss what hypermobility is, what it means for our bodies and minds, and how to practice yoga safely with it. Oxwich Community Hall, 1 - 3.30PM £25 📷 @teahouse_photography
MCAS LIFE!😷 What a very simple, barely-scratched bugbite looks like in an MCAS body after a couple days. I looked like I had a SUPER ripped tricep earlier this morning💪🏻! But right after I was bitten, it looked like a literal NOSE on my arm👃🏻! Histamine is BONKERS. . . P.S. This stuff is actually more scary locally though. My mom just lost a really close friend to West Nile only a few days ago. Sigh. But here I am griping about massive overreactions to tiny bites for education. Sigh. . 🐝♿🐜 . . . . . . #disability #chronicillness #chronicpain #mastcell #mastcellactivationsyndrome #MCAS #MCAD #histamine #allergies #allergicreaction #rash #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility #EDS #HSD #dysautonomia #POTS #erythromelalgia #manonfiresyndrome #bugbite #mosquito #westnile #westnilevirus #spoonie #spoonielife #zebrastrong #chronicillnesswarrior
The newest loves of my life - @kxpilates and @musclerepublicapparel Guest appearance by my tattoo. My phone was put down after this for the actual class 😄 #reformerpilates #musclerepublic #tothebeatofmyowndrum #hypermobile #invisibleknees #Saturdaymorningritual
Since we discussed inflammation & edema in pathology today, I figured I'd share this beaut with you. Those bumps are not my ankle; no, my friend, my ankle is drowning underneath them 💦 My feet are collapsing in. My right foot is missing the inside supportive tendon, as well as another attenuated tendon on the outside that could split simply if I step the wrong way. Advanced osteoarthritis is already in my feet. Parts of my feet have been obliterated (farewell, sinus tarsi!), along with only being able to stand without pain for 2-3 hours. Tonight, I stood for 5 & 1/2 hours. I have custom AFO & inserts, as well as multiple foot braces for support and compression. ♿ I guess that's all the blood leaving the capillaries and going... well, there! Today is one of those days that I'm so thankful for my permanent handicap placard for my car, because walking sucked. #ehlersdanlossyndrome #connectivetissuedisorder #genetictrainwreck #issueswithmytissues #spoonie #straightouttacollagen #fibromyalgia #chronicillness #chronicpain #notalldisabilitiesarevisible #edema #swelling #osteoarthritis #hypermobile
I'm sorry I haven't been as active the last few weeks. I've been terribly sick and in pain dealing with an ovarian cyst and the cartilage around my sternum and rib cage has been inflamed (and that's not all). I hope to back posting more and doing wonderful artistic things next week. Much love to my supportive artistic tribe @For_felt_sake @Whimsy_and_wanderers @waterandwoodstudio @thatshowiknot @Littlefatmouseshop @driftwoodsails @Thedreamydutchy @theladymildred @prettypinkcamoyarn who continue to tag me in things and brighten my day. 😍 .. .. .. #communityovercompetition #spoonielife #spooniesisterhood #ehlersdanlossyndrome #ehlersdanlos #potssyndrome #chronicillness #chronicmigraines #disabilities #disabilityawareness #chronicallyill #blogger #blog #advocacy #invisibleillness #zebralife #zebra #hEDS #hypermobile #ehlersdanlossyndromes #edsawareness #dazzletogether
Hello friends long time no talk because I suck at social media and also because this last week has been a week from hell health wise. I guess I have a few updates? No port or picc right now, we decided it was a step that I’m not quite ready for right now. Instead, I’m back down to only one infusion a week and a new medication to hopefully give the same results as the extra infusions did, so far it hasn’t. From Saturday to yesterday I wasn’t tolerating food very well, was vomiting a lot, and was dehydrated. Thankfully my infusion helped with that, but my blood work showed that my vitamin and mineral levels were really low aaaand I’ve lost like eleven pounds in a week. So, my GI is doing an endoscopy next week because she’s worried I may have an ulcer. Womp, never a dull moment. I’m thankful I’m feeling a bit better today and have kept food down and I’m thankful my pain level is lower than usual today. This weekend is Meggie’s birthday and I’m ready to party 🎉 • • • • • • • #ehlersdanlos #ehlersdanlossyndrome #eds #heds #hypermobile #pots #potssyndrome #posturalorthostatictachycardiasyndrome #chronicallyill #chronicillness #disability #disabilityblogger #disabledandcute #dysautonomia #zebra #spoonie #spoonielife #butyoudontlooksick #invisibleillness
Didn’t really know what picture to post with this so here’s a lil shameless self promo. I really like to draw and have an art account where I post things I draw (duh) that’s @samzsketches. So update I tried jump roping in my gym class today and my hip very clearly let me know it did not like that so I tried jump ropin with my right leg only and that worked a little better but only for a few minutes. I also got my gym teacher to help me figure out more exercises to help strengthen all of my joints so doing track is easier. I might try long jump to who knows. My mom also called to tell me today that she had a consult set up with the physical rehab people and now we just have to make an appointment with GI, but one thing at a time, so ya that’s how my day went:) #ehlersdanlos #polevault #heds #eds #drawing #hypermobile #gastroenterology
Fantastic night 🤗 I am so thankful to have Pluto on nights like these. I would never be able to have some of my life back without him!
From earlier - that's not his cage btw, it's his free roaming base 🙂 Kasper the Annoying woke me up after no more than 2hrs sleep, & this is the first time I've managed to fall asleep at a decent time (before 3am - I fell asleep at 10.30!!) in over a week 😑 And my parents are up tomorrow, so I really wanted to get a good night's sleep 😑 just a lot of 🙄 & 😑 here haha. #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #chronicfatigue #chronicallyill #chronicillness #disabledandproud #chronicpain #cfsme #bipolardisorder #syncope #knitting #loomknitting #guineapig
I dislocated the right side of my jaw the night before last. Eating... a YOGURT . WHAT!?!!...... OW. I am not a fan. 😂 This hasn't happened in... Years! 🙄 I also can never tell if something is totally back in place. Often it just stays messed up slightly and I can ease it back all I want but it's too irritated. SO I'M RIGHTFULLY WHINEY TONIGHT. 😅🤷‍♀️😖Everything hurts. I can't do the splits. Fall is POSTPONED still, but these apocalypse storms are fun right. Jk. I'm having a bed party tonight with my cuddly cats and that will fix me right up. That, ice, heat, and ibuprofen 😺😊💖 . . . . . . . #instapain #hypermobile #eds #dislocations #tmj #dislocateeverything #WHY #DEARGODWHY #ow . #overit #yogastuff #elektrixlove #twist #friday #bored #whyeveneatcollagen #COLLAGENISUSELESS
Last week I was given my 2 cards that I am allowed to use in college (after a half meltdown as nobody told me what the plan was with them the day before and had been waiting 3 1/2 days for them, as I was told I would start back with them - quite ironic when you read card 1 🤦🏻‍♀️). I’m not allowed to use my other pack of communication cards in college anymore but I am allowed to wear my status indicator wristbands. I have to admit that the wording on them has been well thought out and I like it, but the card is MASSIVE (too big to put on a lanyard) so I’m worried I’m going to loose it. I have asked for it to be made smaller with the same words so I can put it on my lanyard. I have to say I find my learner manager and the college SENDCO difficult to communicate with in any form because as soon as I ask any questions (whether it’s because they don’t know the answers, don’t get the question or something else) they both say “no - no - I’m not having an argument with you - I’ve told you we are not having an argument - right okay, by Abby” and twist the fact that I am asking questions so I understand what’s going on (again, ironically considering card 1) so I’m not anxious or stressed about what’s going to happen, into the fact I’m trying to have an argument when I’m not. When I ask questions (usually “why?”) it is not to have an argument it is to help me know about something or understand something, but they both twist it into me trying to have an argument (I have enough going on as it is). We shall see how these work but I don’t see how 2 cards can replace a pack. • • • • • #autism #autistic #autist #aspergers #aspie #ASD #autismawareness #autism #aspergerssyndrome #asperger #anxiety #depression #chronicillness #raredisease #zebra #spoonieproblems #invisibleillness #disability #edsawareness #awareness #chronicallyill #edsawarenessmonth #medicalzebra #hypermobile #hypermobility #aspienaut #wrongplanet #wrongplanetsyndrome #spd
Not sure what I was expecting when I agreed to try the implant but this certainly wasn’t it 😳 also experienced the impact of hypermobility on a local anaesthetic - took 15mins for a small section of my upper arm to go numb instead of a couple of mins 😭 #ouch #implant #localanaesthetic #bandage #woundedsoldier #goodbyepill #helloimplant #hypermobile #bendy #ouchthathurt #bandaged
Hallo Leute :) 🇩🇪/🇬🇧 heute war ich in der Schule und danach habe ich mich zu Hause erstmal ausgeruht. Dann habe ich mir was zu essen gemacht, leider vertrug mein Magen das nicht so gut. Kann zur Zeit wirklich nicht essen aufgrund der Magen Beschwerden. Verliere deshalb auch immer mehr an Gewicht. Aber keine Sorge mein Gewicht ist immer noch im grünen Bereich. also ist nicht so schlimm. Fühlt sich nur blöd an. Ich habe mich trotzdem aufgerafft heute meinen Korb weiterzumachen und bin mit dem Ergebnis auch wirklich zufrieden👌 Er soll nur noch viel größer werden, also es fehlen noch ungefähr 10 cm. Ich mache da nämlich einen Papierkorb raus. ______________ Hi guys ☺️I was in school today, it was very good. After school I took a nap and slept. Well then I made some lunch, unfortunately it didn't felt good for my stomach and I got a horrible pain and felt so exhausted. But after I felt a little bit better. I began to push me through the pain and activated myself. I did my basket for school and am very proud of the result. I think its kinda beautiful even if it's not finished yet :)#chronicmigraine #spoonie #spoonielife   #recovery #depression #health #migräne #chronicillness #invisbleillness #migraine #kreativ #spoonieproblems #staypositive #strong #illnesswarrior #chronischkrank #fighter  #mentalhealth #hypermobility   #mentalillness #pain #chronicpain #selfmade #peddigrohr #DIY #Occopationaltherapy #recovery #Hypermobilitysyndrome #hypermobile
Tell us: Can you recall the first time you experienced pain you later realized was related to your EDS/HSD, or the moment you realized that pain was not normal? This Pain Awareness Month, we would like to hear about your earliest pain memory. Note: Your response may be used in an article for the Ehlers-Danlos Society. Please include your first name in the post to participate. #myEDSHurts #painawarenessmonth #EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #hEDS #vEDS #cEDS #HSD
They told me "it's in your head" I didn't believe it. Yes, after years of medical wandering they managed to make me believe it was in my head. That my pain was psychological. Until I'm diagnosed. And it changed my life. #ehlersdanlossyndrome #ehlersdanlos #eds #zebrastrong #zebrawarrior #dysautonomia #dysautonomie #hypermobility #hyperlaxe #hypermobile #autoimunedisease #autoimune #osteoarthritis #arthritis #raynauds #tachycardia #chronicfatigue #chronicpain #chronicillness #invisibleillness #invisiblepain #invisiblefatigue #spoonielife #spoonie
I did a different workout yesterday and some MMA on Wednesday. Needless to say my shoulders were not feeling the love this morning! . No excuses though. You’re arms have weight to them, but the impinging niggles did not like swimmers. Rather than skip them I just skipped the weight! . Still lifted heavy for the biceps though. . Listening to your body is the most important element whilst working out. . I choose to work with it rather than ignore it and do nothing. Doing nothing actually makes my niggles worse! . Never quit! . . . . . #neverquit #nevergiveup #findaway #findawayormakeone #shoulders #shoulderimpingement #hypermobility #hypermobile #hypermobilitysyndrome #jointhypermobilitysyndrome #jointhypermobility #liift4 #shouldersandarms #bowflex
Had a pretty simple day, woke up late and had lunch before going to a mental health support group. Since coming home I have been exhausted and really struggling with pain. Also I have been monitoring my blood sugars recently to see if they correlated with how I am feeling and today I tested in the afternoon and it was 270!! This has me quite worried 😟 . . . . #chronicpain #chronicillness #spoonie #spoonielife #spooniewarrior #asthma #sciatica #ibs #depression #quotes #nurishnotpunish #fibromyalgia #fibromyalgiaawareness #fibro #fibrowarriors #fibrofog #hypermobile #hypermobility #me #cfs #myalgicencephalomyelitis #chronicfatiguesyndrome #invisibleillness #mentalillness #fibromyalgia #fibro #chronicfatigue #spoonieproblems #spooniestrong #spooniesunite
Yuuum 😍 Today has been a hard day. Lyle has been taking a lot of flak, some of it justified but not needed to be delivered so harshly 😩 Lyle's gone to walk Finley & I'm trying to de-stress through knitting. Tomorrow my parents are up for the day, bad timing in terms of mood, but eh. #vegetarian #goodfood #bipolardisorder #bipolar #depression #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #spd #aspie #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness
Had my rheumatology appointment today, only to be told I no longer meet the hEDS criteria since it’s changed, I have HSD instead and therefore I was being discharged, he did however say I was the most hypermobile patient he had seen. _ On the plus side I’ve finally got a neurosurgery appointment. NHS said I was an “urgent” case so the wait would only be 30 weeks 😱 Decided to go down the private route instead 😅 _____ #pots #potsie #posturalorthostatictachycardiasyndrome #ehlersdanlos #ehlersdanlossyndrome #eds #heds #hypermobile #syrinx #sm #syringomyelia #spoonie #chronicillness #chronicpain
Today is International day of Peace “It is time all nations and all people live up to the words of the Universal Declaration of Human Rights, which recognizes the inherent dignity and equal and inalienable rights of all members of the human race. This year marks the 70th anniversary of that landmark document.” António Guterres The theme of this year is “The Right to Peace. This theme celebrates the 70th anniversary of the Universal Declaration of Human Rights. The Declaration was adopted by the United Nations General Assembly in Paris on 10 December 1948 as a common standard of achievement for all peoples and all nations. The Universal Declaration – the most translated document in the world, available in more than 500 languages - is as relevant today as it was on the day that it was adopted. https://bit.ly/2n4uYJJ Photo by Artem Bali. #vicariantsoul #ehlersdanlos #ehlersdanlossyndrome #yogagirl #dysautonomia #positivevibes #connectivetissuedisorder #hypermobile #hypermobility #yogalifestyle #chronicpain #chronicpainwarrior #chronicillnesslife #chronicillnesswarrior #positivity #invisibleillness #spoonie #spoonies #spoonielife #spooniestrong #mentalillness #mentalhealthwarrior #anxietyrelief #selflovequotes #selfloveyogis #yoga #internationaldayofpeace #selfcare #peace #innerpeace
👑 Don’t look down darlin’ your crown will fall off... ⭐️I feel, as part of my job, it is my duty and privilege to help people to not only build self-confidence physically but also mentally. The two are undoubtedly fiercely inter-linked. ⭐️We feel sad, we eat rubbish, we lack self-esteem and motivation and therefore take the ‘easy’ option by doing ‘not much’. This can then lead to immobility, which in turn can lead to pain and fear of movement altogether. The cycle is a vicious one and I see it so so often. ⭐️If there is one thing I can recommend it is to keep going. Don’t.Just.Stop and make excuses to yourself and everyone else. We all have drive in us, we just need to find it - little by little you will 😉 📷 @chaykra @stylethesustainable
TW, read caption before swiping, tears in skin. . . THIS WAS NOT AN ATTEMPT AT ME TO BIND!! 😂 I had a sore under a chesticle & treatment was a cream & letting air get to it. Only problem is my chest is HUGE...like each one weighs over half a stone (which is just great for dysphoria 🙄). So we held it up with medical tape. News flash - doesn't work, taking the plaster off has torn my skin in half a dozen places, & there's a huge blister 🙄 Yay for most likely #EDS skin being super easy to tear 😌 Wouldn't it be nice if the NHS would just fucking take my chesticles off?? I'm so fucking sick of them (from appearance & dysphoria, to lump fears, their weight & the pain they cause...) *sigh* 😑 #spoonie #disabled #disability #chronicpain #POTSsyndrome #dysautonomia #hypermobile #actuallyautistic #spd #aspie #chronicpain #chronicfatigue #chronicfatiguesyndrome #myalgicencephalomyelitis #chronicallyill #chronicillness #thenhssucks
Let’s talk hypermobility and how to deal with people hanging out in their joints in exercise / yoga: https://www.morgansportstherapy.co.uk/hypermobility-flexibility/ #blog #hypermobility #hypermobile #flexibility #flexible #yoga #yogatherapy #injury #injuries #sportsmassage #massage #MassageTherapy #seeyouomthecouch
Goodbye room 505. Don’t ever want to see you again. I’m in the market for epilepsy specialists closer to home. Any recommendations for neurologists in the Boston area? #ehlersdanlossyndrome #ehlersdanlos #invisibleillness #hypermobile #zebra #spoonie #videoEEG #EEG #epilepsy #seizures
Flipping into the weekend like 💁🏼‍♀️ Happy Friday friends....have a wonderful weekend 💫
TRIGGER WARNING CONTENTS NEXT PIC. I usually wouldn’t post this type of thing at all, but I’m so lost and my surgeon etc is too. This all happened within 15 minutes. Black bile, to clear bile, then to a little bit of blood (I know the photo doesn’t look like it) I hadn’t eaten or drank anything of these colours. Does anyone have ANY ideas of what it could be?!
#Repost @minime513 with @get_repost ・・・ My mind is in heaven My body is in hell My suspension is too stiff so where’s the nearest maccas 🤔✌🏻 #meded #whydoidothistomyself
Can someone please tell me how I used to ride like this? Because I don’t know how I did either 😂😂😂 I’ve had a few people message me asking what Motocross and supercross is, well this is it! 🤗😋
Glad I decided not to ride, still had an amazing time at Sx ✌🏻
I am exhausted. The kind that makes calling, even texting my friends difficult & means I can’t finish tasks as I forget what I’m doing. It’s not always keeping me in bed, but it is keeping me in the house much of the time, watching the world happen around me. When I’m energy lacking, I quickly lack motivation too. A slippery slope of apathy that sees important self care tasks I should undertake each day slip further to the bottom of my ‘must do’ list. What starts as, ‘I can go a day without doing that’ spirals into weeks or months. Things like fluids, providing vital nutrients that my body is unable to accept in normal ways, changing Pluto too many times to count, or taking my medications feel impossible. Even seemingly simple tasks fill me with dread & the option to just not bother is overwhelming. These tasks aren’t glamorous, they’re vital to my survival. They keep me at home & prevent traumatic hospital admissions. (I’ve had enough of them right now) it takes so much out of me to do the simple things “normal” people take for granted.Self care might be wrapped up & sold to you as unicorn PJs & girly days in, but for many it couldn’t be further from that & it’s painful for us to hear discussion around letting your ‘self care routine slip’ when many of us are just about hanging on to homeostasis. Fighting to take care of ourselves in a ‘as well as possible’ way in the hope eventually we might have the energy & access to do something just because it makes us feel good, and do something fun, not just doing things that are vital to keep me alive. I am fucking exhausted. And I’m sure the caption in the photo is self-explanatory why. And guess what? That’s just an average night for me these days. Imagine having to do that over and over and over again. You’d get sick of it wouldn’t you? I sure as hell am, but it’s not something I can just “stop doing” I have no control over my body and what most of the time anymore. And that’s the scariest thing I’ve had to come to terms with. Continued in comments ⤵️
Been told this is nothing to worry about but i feel my elbows have twisted!! No one seems to care! I won’t back down until I see a geneticist. Still undiagnosed and hurting... #eds #mastcellactivationsyndrome #chronicillnesswarrior #hypermobility #hypermobilitysyndrome #hypermobility #spoonielife #hypermobile
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