#ehlersdanlos

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Well still no answers but at least the #neurologist is ordeing an #MRI with and w/o contrast to see if I have any damage ...but noone knows for sure because everyone is busy sending me to someone else. #ehlersdanlos #tia #stroke #mastcellactivationdisorder #arthritis #ehlersdanlossucks #iih
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How we hypermobiles like to sit 😝 These are pictures of what NOT to do. Even though they may be really comfortable, it’s important not to sit like this as it could stretch our ligaments!
One of Watsons favorite games is tug. Unfortunately due to EDS I really can't play tug with him. So we have this toy suspended for him to play tug with. He absolutely loves it. 》》》》》》》》》》》》》》 ° Follow our Partners ° @lexithesuperdog @service_dog_jewbs #blacklab #goodmorning #Labrador #labsofinstagram #dogpark #beautiful #ehlersdanlos #servicedog #servicelab #labradorretriever #americankennelclub #veganhuman #rawfeddog
I am a little late to post this because my awesome dad let Caitie and I miss the festivities at home to go to a concert on Father’s Day. My dad made so many pieces of my wedding possible. He helped engineer my brace to make it so he could take the weight of my leg with his hands so I could (with help) walk a little bit and even dance! We danced to unforgettable and it was just perfect as it is our song. In the second picture those were socks I gave him that day as a special momento. The third picture is him wheeling me most of the way down the aisle... then we both were emotional as I got up and fulfilled my dream of walking down the aisle. That dream came true because of you dad. That was all you. Thanks for officiating our vows and rings and for literally always helping me walk through life (and for wheeling me when I can’t.) I love you daddy 💛 #happyfathersday #iloveyoudaddy #fatherdaughterdance #wedding #ashleygreenphotography #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
At the café after physiotherapy. I had to take my son with me today because school was closed but it went okay. My sacroiliac joint is permanently subluxated and my hip keeps subluxating. After the exercises I've been doing since my last physio appointment, my knee has improved. At the moment I'm trying to strengthen muscles to hold my joints together a bit better. I have new exercises to add to my routine and have also been referred to hydrotherapy. In a month, we'll see what the situation is and whether or not I need imaging done on my hips because there is a big lump on the back of my pelvis (probably the sacroiliac joint sticking out in the wrong direction).
Been for a walk, went to the park with my friend and her little boy and now back home resting with a bit of Aftersun. I needed to get out and have a move around but I feel like I'm gonna sleep well tonight! 😂  #invisibleillness #chronicillness #fixingfletchie #unchargeable   #spoonie #disabled #spooniesisterhood #thisgirlcan #EDS #ehlersdanlos #fibromyalgia #degenerativediscdisease #ddd #pain #chronicpain #fatigue #spondylosis #chronicillnessfighters #sciatica #butyoudontlooksick #hEDS #FragileButUnbreakable
We’re all doing our absolute best; day in and day out. And we should be damn proud of our warrior spirits! 📷: @thefreedomcomplex
Going a little more professional today. I want to keep her desensitized to all three vests we have. This one is typically her cold weather vest but I'll use it for quick trips during the summer too. • • • • • • • • • • • • • • • • #servicedog #servicedogsofinstagram #dogsofinstagram #dog #rescuedogs #rescuetohero #rescuedogsofinstagram #germanshepherd #germanshepherdx #medicalalertdog #mobilitysupportdog #red #gooddoggo #doof #spoiled #gear #fibro #fibromyalgia #hEDS #ehlersdanlos #spoonies #posturalorthostatictachycardiasyndrome #POTS #chronicillness #chronicpain #edsawareness #fibromyalgiaawareness
Sleep tests from night 8 pm till 6 pm today and than today night 8 pm till 11 am on the next day. Sexy isn't it? They are 4 tests during the day: sleep for 30 min😴 than wake up and wait than again sleeping for 30 min😴...4 times. Welcome dizziness! So I hope I get a diagnosis and help without judging me! . . @ehlers.danlos @ehlersdanlosuk @ehlers.danlos.syndrome . . #chronicillness #chronicfatigue #chronicpain #invisibleillness #invisibledisability #spoonie #spoonielife #spooniefamily #spooniestrong #POTS #TMJ #HSD #eds #heds #MCAS #mastcell #gastroparesis #dysautonomia #hypermobility #ehlersdanlos  #zebrastrong #ehlersdanlossyndrome #dontjudgeaperson #dontjudge #alwaysfighting #mylife #butyoudontlooksick #spinalfusion #fightlikeawarrior #chroniczebra
Cardio today so I did Clean Week, didn't want to go crazy as very sore, stiff and tired from the big trip! Beardyface is happy to be back in his own bed after a weekend at the holiday camp for dogs aka the kennels 🤣😊. #workout #cardio #cleanweek #beachbody #spoonie #chronicillness #chronicfatigue #hypermobility #hypermobilitysyndrome #gettingfitter #gettingstronger #plussizefitness #HAES #zebrastrong #chronicfighter #fitfam #noexcuses #noexcusemoms #deathfat #eds #ehlersdanlos #edsathletes #sizeacceptance #fatacceptance #nofatshaming #fatshamingharms #schnauzer
🎀 Pretty in PICC 🎀 I don’t believe in playing the socially dictated role of “sick person.” If I want to wear lipstick and a romper to the hospital, I’m going to. If I feel like sweats, I’ll wear that. I get to decide how I exist in public, whatever that may look like. People with chronic illnesses and/or disabilities can look however they want - #butyoudontlooksick should never apply ••• #chronicillnesswarrior #spooniestrong #invisibleillness #choosehappiness
🦋 "Each day is a gift. That's why it's called the present." 💜🦋💛🦋💙🦋💚🦋💜🦋💛🦋 . 👑 Take a few moments today to remember who you are and what makes you so unique.🤸 I mean, you're one of a kind! There's nobody else like you! How incredibly cool is that?!? 😎 . 👋Gone are the days of believing I'm not all I should be and that I'm not good enough. I'm done with that noise! 👍And you should be, too! 🤔Let the people who know and appreciate what's in your heart shower you with love. 💞 And show the folks who love you as much love as the folks you wish loved you. 💋 . . 👻Personally, I'm finished with chasing shadows and ghosts, and I see myself as the ever-changing, ever-growing, powerful person I am - with some really amazing things blossoming on the horizon!🥑 . #plantmedicine #planthealing #happylife #loveyourself #loveyourlife #expression #canna #growers #garden #humans #supporteachother #IAmCannabis #chronicpain #dystonia #dopamine #breasts #freedom #yourbody #sexualhealth #kayaking #montana #yourlifestyle #montanalife #goodvibes #goodmorning #healyourself #ehlersdanlos #aspie #natural #holistic
Does anyone else wake up stressed for no particular reason? I woke up today and felt all moody and tired and fed up. Not helped by an early morning start to have a shower and get dressed before the decorators turned up. Then the hammering and drilling started . . . It felt like it was happening to my head rather than whatever it is they were banging! 🔨🤨. So I took myself here. And it was the best thing I could have done. Calm, relaxing, peaceful. I haven’t got any medical appointments this week, which is rare. So I’m going to try and relax interspersed with some work that I need to do. It’s all about self-care. Sometimes that’s a walk in the park, others times it’s having a favourite cup of tea or sitting in the garden with a novel. Hope you can get some self-care in this week too. . #fibromyalgia #fibro #pots #posturalorthostatictachycardiasyndrome #dysautonomia #autonomic #eds #ehlersdanlos #ehlersdanlossyndrome #hypermobility #headache #migraine #vertigo #vestibular #mcas #mcad #mastcellactivationdisorder #raynauds #ic #interstitialcystitis #invisibleillness #chronicpain #chronicfatigue #chronicillness #spoonie #kewgardens #rose #roses #nature
Well to say my first Father's Day was amazing would be an understatement. I got a lot of time with my boys, had Victoria's Bagels for breakfast, watched some World Cup, got to the gym, got a very brief park workout, went to Danielle's parents and as always, has a good time and great food. Danielle spoiled me with an awesome bearded dad shirt, @monstroninjaholds poly peg balls, and a frosted mug with some awesome pics on it. Thank you @danielleb_fit for going above and beyond for Father's Day, just as you do everyday for our boys!💜
Received a lovely bright #yesidonate card through the door. I think I've been on the Organ Donation Register for almost 14 years or so and finally receiving diagnoses and starting medications has not affected being on the register at all. I see people commenting over social media platforms, usually on organ donation posts, suggesting that their chronic illnesses mean they cannot/are not allowed to register, yet have actually never spoken with the NHSBT. There are actually very few health conditions that make someone completely unable to register. For most people their health actually has little/no impact on being able to register to potentially help save the lives of those waiting on organs. At the unfortunate time of death/brain, death general health of the donor and organs are assessed by medical professionals to determine whether organs are safe to be transplanted, and in many circumstances your organs may still be very suitable, and even if they cannot all be used, even one or two organs will really change the lives of other people. . . While I wait for #Scotland to hopefully introduce an opt-out scheme, the ability for family to still potentially refuse donation regardless of your wishes will still remain. Please make sure family/NOK know that this is something you want to do! Should this ever be a decision they need to make, it will quite likely be under quite sudden and/or traumatic circumstances where shock and grief can affect that decision. When death is more foreseen, sometimes there is the chance to fulfil 'final wishes', be it a special trip, a specific meal, getting to die in a special place, or even getting to see pets a final time. Have the discussion with your families and let them know that this act could be seen as such a 'final wish' in more sudden circumstances.
Good morning ☀️ Recently, I have been trying to find a bible study that goes through all the mentions of trees and their meaning in the Bible 🌳 I heard a speaker earlier in the year who talked about the importance of trees in the Bible, and now I really want to buy his book (of course, when I’m going broke trying to buy books for college). Anyways, I started this new bible plan today that is 91 days. It’s a 4 part study, each part is 3 months, and I will cover the whole bible. I will probably be posting about it for the next few months! • • • #medicalzebra #chronicillness #ehlersdanlossyndrome #eds #jesus #ehlersdanlos #love #spoonie #christianity #colossians #chronicpain #spoonielife #invisibleillness #faith #bibleverse #edsawareness #pray #zebrastrong #spoonies #glorytogod #forhisglory #spooniewarrior #hypermobility #spoonietruth #blogger #blog
When you’ve got a performance the next day and can’t afford another bad night, so you take a sleeping tablet. It hits hard and fast and makes me feel drunk - pleasantly so. At this point sleep is not far away! Sleep tight! Px #eds #ehlersdanlossyndrome #ehlersdanlos #invisibleillness #chronicillness #potssyndrome #potsie #zebra #zebrastrong #fatigue #sleep #sleepdisturbance #sleepingtablet #ifeeldrunk #offtosleep #sweetdreams #sleepissues
Yesterday I arrived at the sleep labor in munich. The first night wasn't so nice. In the morning my doc came and said "The computer analysis shows that you have a sucky sleeping"... Yes you read right sucky... but the worst thing was he ask if I'm married and I said not yet but soon. Then he ask if my fiance know about my illness. I said of course. And then he said stunned "and he'd like still married you?" . Excuse me YES why not? I'm not a pleasant human person? What does it mean STILL? The doc knows nothing about EDS and I'm only here for the arousel diagnosis and sleep disorder but not to abuse me. . To all Warriors ignore such comments and believe in you, your strenght, your fighting spirit, your feelings and in your partners. Don't give some idiots the power! We are all humans and all adorable. So please stay strong🙏❤ . . @ehlers.danlos @ehlersdanlosuk @ehlers.danlos.syndrome . . #chronicillness #chronicfatigue #chronicpain #invisibleillness #invisibledisability #spoonie #spoonielife #spooniefamily #spooniestrong #POTS #TMJ #HSD #eds #heds #MCAS #mastcell #gastroparesis #dysautonomia #hypermobility #ehlersdanlos  #zebrastrong #ehlersdanlossyndrome #dontjudgeaperson #dontjudge #alwaysfighting #mylife #butyoudontlooksick #spinalfusion #chroniczebra #fightlikeawarrior
"We are so lightly here It is in love that we are made In love we disappear."
I'm still not happy with the Curlin pump and tubing situation. I switched infusion pharmacies which overall has been a pretty good experience so far. But the tubing that they gave for the Curlin pump doesn't have a spot to administer bolus doses of meds, so if I need to push Benadryl or Zofran while an infusion is going, I have stop the pump and disconnect everything, push the med, and then reconnect and start the pump again. Not convenient, harder to do when you bensdry *now*, and probably higher risk of infection too. The CADD tubing had a spot to just inject the med right into the tubing and was so much more convenient. The pharmacy said they could try to find me a port needle with a Y connection so I can push meds that way while running an infusion. Not my ideal scenario, though I'll try it. But I'm befuddled as to why Curlin tubing with an injection spot for meds does not exist. #IVMeds #dysautonomia #MastCellDisease #curlinpump #caddpump #mastcellactivationsyndrome #ehlersdanlos #benadryl
Sometimes there’s a plus to being a bendy zebra - being able to get in a position to neatly paint toenails! I’ve quite often been asked by friends how I get my nails so neat - by bringing my foot close to my face, doesn’t everyone do that?? 😜 (Yay for covering up my bruised nail too!!) #eds #ehlersdanlossyndrome #ehlersdanlos #bendy #zebra #zebrastrong #invisibleillness #chronicillness #collagendeficiency #collagendisorder #positivity #plusside #findthepositives #paintingtoes #toenails #paintedtoenails #nailpolish #winternails
Since I’ve been sick, one of the activities I’ve tried to maintain is cooking. It’s something I really enjoy and it’s relaxing for the most part. I usually will cook for three (my parents and I), but since the whole family was over, I cooked for 9 people (7 adults, 2 kids). Like I said, i love cooking and using it as a creative outlet. That being said, I’M SORE! #addisonsdisease #avascularnecrosis #adrenalinsufficiency #butyoudontlooksick #chiari #chronicpain #chronicillness #chronicillnesses #colitis #dysphagia #dysautonomia #ehlersdanlos #ehlersdanlossyndrome #fatigue #gerd #hypoxia #invisibleillness #mcas #mastcellactivationsyndrome #nervepain #occipitalneuralgia #osteogenesisimperfecta #pain #reynauds #spoonie #spoonies #tmj #vertigo #zebrastrong
Thank you to everyone who contributed to our fundraiser both Tuesday Night and after the fact! This year we raised $108 to donate towards research and awareness for Ehlers-Danlos Syndrome through The Ehlers-Danlos Society! (@ehlers.danlos ) #tangodancing #socialdancing #tango #alternativetango #eugeneoregon #lovedance #dancing #tangodancer #argentinetango #tangolife #tangolove #tangopassion #milonga #tangotime #tangomusic #tangolic #ehlersdanlossyndrome #ehlersdanlos #zebrastrong
Wrote a couple new songs today. We started piecing together the keyboard and bass for the first verse. Process takes so long, and I really struggle to sing and play at the same time. Practice! Throat hurts. Fingers hurt. Back hurts. Hips hurt. Shoulder's dangling. But it was fun! 😜 @sub_sides ...nice jam session! Let's do it again soon! . . ID: April is holding a black microphone and has her mouth open in a funny (maybe scowly) look. Her husband Drew is in the background slapping bass. The room is a jumble of music and teaching equipment. . . . #eds #ehlersdanlos #ehlersdanlossyndrome #edslife #hypermobileeds #edsawareness #hypermobility #sickpeopledoingthings #subsides #rockandroll #disbabeled #disability #disabled #pain #chronicallyill #chronicillness #invisibleillness #love #husbandandwife #chronicpain #chronicallyfabulous #singing #song #band #bandpractice #cpunk #forkyourspoons #disabledandcute #cripplepunk #babewithamobilityaid
Happy Father’s Day to the most amazing Dad, I’m blessed to have my father in my life for another year. Dad, I know how much my illness has changed your life and that it has hurt you to watch me suffer and almost lose me time and time again. Despite this we have made amazing memories, you’ve taught me a lot and I can’t thank you enough for being apart of my life and showing me what a hard working father and man will sacrifice and do for his family. Thank you for supporting me in my dream and for being my dad, even though I’m 18 years old no matter where I am in my life I will always be “Daddy’s little girl” 👑 . . . . . . . . . #thegirlwhocanteat #fathersday #tbt #throwback #nontoxicbeauty #nontoxicskincare #nontoxicmakeup #crueltyfreemakeup #crueltyfreeskincare #family #thankful #inspirational #greenbeauty #greenbeautyvlogger #tubie #chronicillness #eds #ehlersdanlos #ibd #crohns #crohnsdisease #chronicillnesswarrior #chronicillnessblog #spoonie #gp #gastroparesis
So I found out recently that my #painmanagement dr is getting off the grid-with all the horrible new CDC Guidelines he feels he’s unable to properly treat #chronicpainpatients so he’s no longer treating those on #disability .I’ve been trying to get on disability this year-it took a super long time for me to get my parents to accept that I needed to be on disability because at this point I just can’t work.My pain is just too bad-I’ve looked into so many options but I never got a degree and my brain doesn’t work like it used to,neither does my body...I’ve really wanted to work but I just can’t hold up a job.So now my choices are 1.Keep trying to get on disability and hope against all hopes that there’s a pain management dr who’s willing to prescribe opioids(which if you’re a CPP you know is basically impossible),or 2.I drop the disability thing,find some type of job I can do so I can still have insurance and continue to see the ONLY dr who has understood my health issues and treated them seriously.The first doesn’t feel like an option at all...I have no idea what I’m gonna do for work when I’m as bed bound as I’ve been...but I really need this pain dr-he showed up at the #DPP2018rally in April-he understands the importance of opioids.So yeah...this is going to be tough.I mean,it’s embarsssing how much help I need in life.But this is forcing me to fight even harder which I’m gonna take as a good thing despite everything...this weekend I’ve been encouraged because the last three days in a row I’ve swam in the pool,taken a shower(I usually take baths and a lot of time need help with even that..),and been doing more small things around the house.I know those things seem small but they are HUGE for me.So huge.Ive missed not being able to do normal things on my own...pain has taken so much independence from me already.It feels so good when I’m able to do that stuff.Its not that I’ve been pain free-half the time I’ve been in bed trying to sleep cause I feel so horrible.But it feels good to do things-it makes me think I have a chance at finding some work to do.Im a long ways off but for right now I’m gonna be super proud of myself for doing some small stuff on my own.
I’d only just managed to drift off to sleep when Annie woke up with gum ache. Bonjela and calpol and she’s fast asleep again. It’s 4.14am and I can’t get back to sleep knowing we have to be up in 3hrs. The anxiety of sleeping through all the millions of alarms I set on school mornings is real (and has been done before 😅) • • • #nosleepclub #teamnosleep #insomnia #anxiety #painsomnia #chronicillness #parentingproblems #typical #schoolnight #technicallymorning #iamsotired #ehlersdanlossyndrome #ehlersdanlos #peoplehopetribe #prayforsleep
Zabuton arrived...extra comfy on my joints now with the zafu + zabuton combo. I can't wait to set up my meditation corner. #innerpeace #buddhism #zebra #ehlersdanlos #spoonielife
This man can make me smile and give me reason to fight on, even on my toughest of days. He still loves me even when my pain and fatigue get too much and I up pushing him away as I can't see why he would want to love this! But he does and my pushing never works. He says he loves me for me, that he fell for smile & didn't realise I was disabled when he first laid eyes on me, but when he found out, it didn't put him off. He has been there for me through the hardest of times as I have for him. We have smiled, cried, laughed together. We have wiped each others tears away. This week we have created more happy memories. We have talked for hours about some of the deepest things in life. We have enjoyed adventures. Jon has pushed me around every place we could get the wheelchair around, he has helped me in and out of the swimming pool, he even cooked me scrambled eggs! We didn't have a single row about anything, not even tiny things, even when the bed got a puncture and we woke up on the floor! Thank you @mr_incredible75 for making another holiday memorable for the right reasons, and I look forward to our next adventure in our tent! #cripplescancamp #cripplescangocamping #jonandlizdevon2018 #happyholiday #happycamping #makingmemories #lovehim #happilyeverafter #unconditionallove #hestilllovesme #disabled #disablednotdead #ehlersdanlossyndrome #ehlersdanlos #fibromyalgia #chronicallyill #chronicfatigue #chronicpain #degenerativediscdisease #facetarthritis #plantarfasciitis #camping #campingholiday #devon #dawlish #wheelchair #wheelchairuser #scrambledeggs #bestholidayyet
Found this little fella at the gift shop at Shaldon Zoo, Teignmouth. Funny though as there aren't any Zebra at that zoo, but they had these little magnetic cuties for £2.99! He has magnets in his hands and feet. I was wearing him a bracelet but took it off in the car, thought I had lost it when Jon pointed it out hanging from the gear stick (and before anyone says anything, no, it does not affect driving). He stayed there all the way home. So now we have another little zebra in our family but everytime I look at it I will be reminded of that day of our holiday! And if anyone asks about it, I can tell them about zebras and Ehlers Danlos Syndrome #makingmemories #jonandlizdevon2018 #shaldonzoo #teignmouth #zebra #magneticzebra #magnets #gearstick #car #ford #forduk #hangon #hangingon #holiday #holidayreminder #zebratoy #edszebra #ehlersdanlos #ehlersdanloszebra #ehlersdanlossyndrome #disabled
✨sometimes I wish I had the power to physically grab the light and give it to all of you. Thank you all for being here for my ramblings. 😘✨ you ALL are such a wonderful group of support and solidarity. Love you ALL!! 💛 #cheeseyaf #chronicillness #chronicpain #raredisease #eds #heds #pots #mcas #mcad #dysautonomia #ehlersdanlos #ehlersdanlossyndrome #hypermobileeds #hypotension #mastcellactivationdisorder #mastcell #mastcellactivationsyndrome #spoonie #zebra #zebrastrong
Join us on @twitter and @periscope_app at 8:30 tonight eastern on @chronicallyrara as we do a Q&A about all things #ehlersdanlos #POTS #raredisease and #invisibledisease and my #servicedog Gus!! Find us at chronicallyrara
How my day is going so far.
Missed these sweet brown eyes so much! Crazy to think that a weekend is the longest we've ever been apart since her adoption. My life feels compete with her. She always has my back with medical issues and I've helped her learn what love is. We've worked through a lot of stuff together and still have some more to go. #love #loveyou #browneyes #puppylove #dogsofinstagram #dogs #servicedog #servicedogintraining #ehlersdanlossyndrome #ehlersdanlos #potssyndrome #pots #reconnected #backtogether #backtoyou #chronicillness #zebrastrong #girlsandtheirdogs
So this is kinda the same as bed rest... right? 🤣🤣 life isn’t perfect and my body is also far from perfect so I choose to spend my spoons making memories... even if I use all next weeks spoons. Thanks bae for finding these tickets so we could see @5sos before you left for college. Now this potsie is going to cover herself in ice packs to try not to faint in the heat 😂 #kiss108kissconcert @kiss108 #youngblood #makingmemories #spendingmyspoons #livingthechronicillnesslife #livingthevow #amnesiawontwin #spoonie #finallyamrs #marriedlife . . . #rsd #crps #rsdcrps #rsdcrpsawareness #rsdcrps4acure #eds #ehlersdanlos #ehlersdanlossyndrome #edstype3 #dysautonomia #fallrisk #pots #potsie #lifestyle #lifestyleblog #blogger #blog #happiness
Today on "Abbys a stubborn idot" walking through Aldi. I am not doing well. Endometriosis is kicking my tush right now and sending my entire body into a horrid spiral of dislocations, fevers, nausea, and pain. We needed to pick up a few things at the store and I insisted that I could walk through Aldi with just the help of Moo. Instead I found myself gripping the cart and racks trying not to pass out. Moo alerted several times, giving me a nice reminder that I was silly for thinking I'd be fine. We're back home and I'm back in bed just curled up with pain meds I know wont help and some ice water. I want to try and get to the pool and relieve my body of some of its pain but I'm not going to get my hopes up. Moo is so good though, every time I lie down she gets right on me and does some deep pressure therapy on my legs (something I trained her to do) without me asking. She knows I'm hurting. It's hard to accept where I am with my body because some days i will happily grab my wheelchair and other days I'm just still not ready to admit where I am. I know God is using this, as he uses all moments, to teach me and shape me. So i will allow myself to be clay in his hands and welcome these struggles as best i can. . Also moo really likes to put her paw on my foot when I'm shaky and it's super cute . Image description: aerial view of abbys legs in black sweatpants. Moo is in front of her in her vest and next to them is the side of a grocery cart #eds #ehlersdanlos #ehlersdanlossyndrome #chronicillness #chronicallyill #spoonie #rsd #crps #POTS #POTsie #tachycardia #pain #disabled #disability #edstype3 #dysautonomia #edsawareness  #chronicpain #100InvisibleDays   #servicedog #pitbull #staffordshireterrier #servicedogintraining #sdit #mobilityservicedog #mobilitydog #edsservicedog #bullybreed #dog #MooTheMobiltyDog
🏵close up detail on my new bedding🏵 . . 🐙lmao I just went to change the bed and put on my new #primark bedding (already seriously low on spoons and dreading wrestling with the mattress to fit a sheet on) so I took off the sheet AND THERE WAS A CLEAN ONE UNDERNEATH halleluuuuuuuuu!!!!! TIP: put 2 sheets on ur bed!!!! Especially good for when u tired and spill something (me always) does anybody else do this??🐙 . . #paisley #spoonie #spoonielife #spooniehacks #ehlersdanlossyndrome #ehlersdanlos #eds #chronicillness #puregeniustbh
So, I’ve had my suprapubic catheter since October 2016 and up until this point despite horrific pain on changes and contestant spasms there hasn’t been that much drama. Until 3 weeks ago....now I have one stuck in me and having to get admitted tomorrow to figure out a plan. Less than ideal anyone wanna message me jokes/memes etc to help the anxiety more than welcome! #fowlerssyndrome #neurogenicbladder #suprapubiccatheter #catheter #ehlersdanlossyndrome #ehlersdanlos #gastroparesis #tubefed #gtube #jtube #pegj #chiarimalformation #idiopathicintracranialhypertension #posturalorthostatictachycardiasyndrome #hospital #admissions #admission #pain #allthepain #anxiety
It’s been a potsie kind of weekend. I went to sleep on Friday at 22:00 and woke up on Sunday at 8:00. James woke me every few hours on the Saturday to give me fluids and medications but other than that I was out of it. Back to normality today and even managed to face IKEA albeit a very quick focused in and out! Hopefully my marathon sleep has set me up for a good week! . . . #pots #potsie #spoonie #ehlersdanlos #addisons #IBD #ulcerativecolitis #colitis #syncope #malignantsyncope #dysautonomia #servicedog #assistancedog #swimmer #athlete #hypermobility #hiddendisability #RAS #reflexanoxicseizures #mastcellactivation #disability #chronicillness
I woke up in the Helicopter. It’s the first time I’ve ever flown. I wish it was under better circumstances. HMS Coastguard flew me to Bronglais Hospital in Aberystwyth. We landed on a playing field of a college and transferred by ambulance to the hospital where there was a team waiting to meet me in Resus. 🚁🚑🏥 #eds #ehlersdanlos #ehlersdanlossyndrome #raredisease #zebra #chronicillness #chronicpain #disabilityblogger . . #spoonielife #spoonies #spoonieforlife #spooniecommunity #spoonietruth #spoonieprobs #spoonielove #spooniegirl #spooniesupport #spooniewarrior #spoonieliving #spooniefamily #spoonieblogger #spooniesunite #spooniefriends #spoonieproblems #spoonie
Just :"LIVE" ! Yesterday I went for a bike ride with my sister, it did me a lot of good ! Today I'm exhausted, my body doesn't thank me but I don't care ! Sometimes you just have to take the time to live.. 💪 #live #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlostype3 #eds #zebrastrong #zebrawarrior #hypermobility #hypermobile #dysautonomia #tachycardie #tachycardia #mastcellactivationdisorder #chronicpain #chronicfatigue #chronicillness #invisiblepain #invisiblefatigue #spoonie #spoonielife #autoimmune
I’m having a really hard time mentally at the minute. Trying to process and deal with the trauma of the last year or two is harder than I ever dreamed it would be. I’m trying to learn my triggers and coping mechanisms but it just leaves me heartbroken, knowing all the people that treated me so badly, to the point of me being literally traumatised, were all people I asked for help and trusted. Only half were doctors or medical professionals. The rest were people I thought cared about me. So lucky to have the two best friends who keep me going (even if they selfishly live miles away 🙄) because if I didn’t have them I don’t think I’d be here today. • This is a reminder to always be kind. You never know what people are going through and you also never know how your words and actions can affect somebody. • • • #mentalhealth #mentalillness #endthestigma #itsokaynottobeokay #trauma #mentaltrauma #mentalabuse #chronicillness #chronicallyill #ehlersdanlossyndrome #ehlersdanlos #depression #invisibleillness #psychologicalabuse #zebrastrong #peoplehopetribe #spoonie #crochet #crochetaddict #crochetersofig #crocheting #crochetlove #crochetersofinstagram #crochetando #crochetlife #crocheteveryday
First pool day of many☀️
I had 3 seizures which lasted for about 15 minutes in total and I was unconscious for over an hour. My best friend Mayia called an Ambulance, and we got Mountain Rescue and the paramedics. They were so wonderful 🙌🏻 #eds #ehlersdanlos #ehlersdanlossyndrome #raredisease #zebra #chronicillness #chronicpain #disabilityblogger . . #spoonielife #spoonies #spoonieforlife #spooniecommunity #spoonietruth #spoonieprobs #spoonielove #spooniegirl #spooniesupport #spooniewarrior #spoonieliving #spooniefamily #spoonieblogger #spooniesunite #spooniefriends #spoonieproblems #spoonie
I'm feeling a little better today than I did last night. I'm still having some pain but it isn't as bad today.😁 I'm able to do art therapy and I did my makeup today. I did a different look that I'm proud of. My eyeshadow is a rose gold that blends into peach then dark purple. My lipstick is black and purple ombre. 😄❤ #makeup #slowdigestion #gastroparesis #arttherapy #ehlersdanlos #ehlersdanlossyndrome #chronicillness
Having wrecked myself at two straight weekends of Pride, I feel like this is appropriate…
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