#zebrastrong

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Look what I 've got with the mail...a special blanket for children that are chronically ill... #ZEBRASTRONG #ehlersdanlossawareness #ehlersdanlossyndrome #LittleZebra #FragileButUnbreakable #special #blanket # colorfull
🦓💗🦓💗🦓💗🦓💗🦓💗 I am more than my connective tissue disorder! I have it, it doesn’t have me! I am fighting for SSDI again for the second time in a year and a half (tomorrow). I am asking for Gods favor and divine intervention. Please pray with me that my voice is heard! For all the people that have invisible illness-stand up for yourself! Don’t take no for an answer, appeal it, don’t give up! #spoonieforlife #zebrastrong #invisibleillnesssucks 🥄💗🦓🥄💗🦓🥄💗🦓🥄
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so this bastard burned my #boob bc im a v #good judge of character rly do I keep putting this terrible cream on it in the vain hope of #healing or do I #leanin it and get it tattooed into a second nipple already #connectivetissuedisorder #zebrastrong #zebraweak also sorry, nobody who reads these lol I only own lingerie that could also serve as costumes in my #avantLARP & this was the least absurd of all of them actually & hey if ur into helping w that &ur based in NYC or RVA hahahahahahah DM ME ESPECIALLY if ur ok wearing an #encapsulatedsuit my doctors forbid me :(
Got a list of all my headache symptoms together to send with my MRI Headache (back right of head) -worsened my sneezing/coughing, barometric pressure and elevation changes -sometimes radiates upward -never goes away, fluctuates in intensity Pain with swallowing -stabbing pain to back of head -food coming out of nose occasionally Right arm/hand tingling Right hand numbness Burning in right arm and leg Right leg tingling Hand/foot weakness Balance problems (dizzy and falls) Ringing/ static in ears Confusion Can’t lay flat - feels like I can’t catch my breath Loss of gag reflex I am not really sure if all these things are directly due to the headache but they are things that started happening with the headache. So for things like nausea I have not found a connection between that and my headache but more with my GI stuff so I didn’t include that in my headache symptoms. I have been doing some reading on the structures of the brain and it is a bit worrisome that the headache and cyst is on the right side of the head about where the cerebellum are located. And the cerebellum functions ipsilaterally (in like the rest of the brain) and my problems are all on the right side. I am curious to know if there has been changes to what my scan would look like now, since the scan that we have been looking at is from 2016. It is not because of lack of attempts to get another scan done just I have never been able to finish a scan either because of pain or twitching/moving without knowing it. The only one (which has actually been finished) that might have looked at that part of my brain was done in the ER and I don’t have a copy of it so I can’t just look to see if there has been a change or what. I hope that is not bad that I am actually hoping we have found the cause of my numbness and coordination problems and maybe even the headache. I don’t even know why I am kind of hoping this is it because it would not be an easy fix if it can be fixed at all. But at the same time it is something that can actually be measured as being wrong. For everything else there is no blood test or scan that can be done and said this is It
Sometimes the best way to fight something is to simply acknowledge it. There is something freeing and empowering about breathing in pain and in those 5 seconds knowing that if you control your breath, you control your pain. 🌻 • • • #zebrastrong #eds #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #spoonie #spoonie #spooniewarrior #invisibleillness #chronicillness #sicktofit #butyoudontlooksick #mentalhealth #mentalhealthawareness #pain #strength #fight
"Learning to ❤ My Scars 1. Come to terms w/ them. The 1st thought I had when I saw the pic on the L was "Oh my that's a long scar & now my back has more scars". That's OK! 2. Acceptance. I will accept this scar & all the rest on my body bc they're a part of me. Although, they don't define me. 3. Self Love. I ❤ my scars even though I wouldn't have chosen them. I'm proud of them. EDS is a fight every day. There's a quote, "Don't be ashamed by your scars. They're reminders you're a survivor. You're stronger than whatever tried to hurt you" -unknown This is how I feel. They are my battle wounds ~Megan King @thetravelinghaloofhope * * I saw this new scar on the L 1 year ago today. It looks medical to me. The pic on the R was taken 6 months ago today by @amydfoto during @underneath_we_are_women project. When I saw the photo I saw beauty. I didn't see medical. I earned that scar & it's represented in an artistic way. I apply that quote I just mentioned to both pics. Knowing that entire scar will be reopened again makes me proud of myself bc I survived last year & I'll get through this year. I've always called my scars my "battle wounds". Each surgery is like a battle to overcome * * @edsawareness_official @themightysite @ehlers.danlos @ehlersdanlosuk * * * #selflove #acceptance #selfacceptance #ownit #comfortableinmyownskin #bodypositive #bopo #bodyappreciation #survivor #scars #scarred #scarsarebeautiful #ehlersdanlos #ehlersdanlossyndrome #invisibleillness #chronicillness #chronicpain #zebrastrong #spoonielife #roadtorecovery #hope #positive #bodypositivity #underneathwearewomen #themightysite #edsawareness #scoliosis #fusion #surgery #bodyimage
My staycation almost didn’t happen as planned because of an unexpected 6 hour stint in the infusion center on Friday. So thankful for time away to relax but also feeling SO frustrated that this is my life now - IV infusions, P.O. medications, ridiculous amounts of drinking (water), and relaxing in the shade. Just for one day can I be a “normal” 25 year old?! Chronic illness friends- any tips for those days(weeks) when the frustration clouds the positives that are all around?! I’m getting so sick of this 😭
Arlensiu (mienfermedadinvisible) recibió medicamentos importantes, Clorotrimetron para emergencias alérgicas y otros suplementos e insumos que utiliza con frecuencia. Gracias por el Apoyo que le brindan! Apoyala, multiplica sus seguidores/as y busca quienes puedan ayudarla a llegar a USA más rápido... ¡Domingo de dar Gracias! . ¡Ya tengo en mis manos mi otros medicamentos que uso! . ¡Directo desde México y USA! . ¡No me rindo, gracias por tanto apoyo! . . #superarlensiú . @mienfermedadinvisible #fragilperoinquebrantable . #ehlersdanlossyndrome #dysautonomia #gastroparesls #rarediseases #ZebraStrong #fragilbutunbreakable #fragilbutunbreakable #carteldelbien @RepostIt_app
🎉ATTENTION RARE BEAUTIES: 🎈Have you heard?! 🙉 My first blog post went live this morning! 🌞 If you're looking for a Non-Toxic, Cruelty-Free, AND Organic makeup line, you'll want to read this! Even the most sensitive of skin can appreciate this review! 🎉 . 👆Check out the link in the bio and follow @baeblubeauty !!!!💋 . ❤️On September 25th, I will be talking about sex, body image, and how chronic pain can affect them! ❤️ . #blogger #newblog #newpost #baeblu #baeblutribe #baeblubabe #vegan #crueltyfree #nontoxic #organic #fairtrade #makeup #beauty #chronicpain #raredisease #sensitiveskin #EDS #aspiegirl #autism #zebrastrong #unicorns #raretogether #soberlife #spoonies #review #undiagnosed #cannabiscommunity #realwomensupporteachother #cannabis #plantsoverpills **Photo courtesy of BaeBlu.com
Ultrasound, urine, & blood tests done. I have the rheumatologist appointment this week in 3 days, wish me luck guys! I'm really nervous about it. Last time I seen this doctor he was very rude to me. I have a lot going on I need it to go well, feeling sensitive as f. + test results from my spine MRI will be discussed 🤞🙏
¡Domingo de dar Gracias! . ¡Ya tengo en mis manos mi otros medicamentos que uso! . ¡Directo desde México y USA! . ¡No me rindo, gracias por tanto apoyo! . . #superarlensiú . @mienfermedadinvisible #fragilperoinquebrantable . . 🚩 www.gofundme.com/arlensiumienfermedadinvisible . PayPal mienfermedadinvisible@gmail.com . Banesco 01340447084472084378 Arlen Daza . #ehlersdanlossyndrome #dysautonomia #gastroparesls #rarediseases #ZebraStrong #fragilbutunbreakable #fragilbutunbreakable #carteldelbien
I haven’t felt this beautiful in my life. I’m finally in a place where I can look in the mirror and not feel like cringing. Finally in a place where my symptoms are under control. I’ve never felt nor looked better- physically, mentally, and emotionally. It’s all thanks to God. As these pictures were being taken, I thought to myself ”woah.. this is the first “official” picture I’ve taken with my AFOs!” They make me feel secure, pain free, and dope because duh- they’re comic book themed. 📸 creds to Jeremiah’s mom! #RachelAndVincent #WeddingDay #godisgood #trusttheprocess #nofilter #loveyourself #ehlersdanlossyndrome #zebrastrong #healthyishappy #healthyisbeautiful #retiredflowergirl #afos #housemallister #GoT #fitbitcharge2 #americanmedicalid #ilovehashtags #illstopnow
~Healing journey update~ Up untill a few years back I thought everyone was in pain daily and it was just part of living. Wasn't that why people complain that life is so hard and why they sold painkillers at drugstores and pharmacies on basicly every streetcorner? Well, apparently not. But I really didn't know any better. I grew up with pain since a fairly early age. I never knew better, it is my normal. ⠀⠀⠀⠀⠀⠀⠀⠀ In december of last year I went to a new PT with another subluxated hip. Just from listening to me describing my symptoms and him observing me, that PT instantly said he thought, no he knéw I had Ehlers-Danlos Syndrom. Wait, what??! Well after waiting 9 months and a 90 minutes appointment at a geneticist it turns out he was right. I do have EDS, which is, if you're not aware, a group of connective tissue gene disorders. I have the hypermobility type hEDS. ⠀⠀⠀⠀⠀⠀⠀⠀ Because the collagen in your entire body is basicly faulty it gives wide spread problems and pain. The collagen in your body is supposed to support your joints, muscles and even your organs. When you have healthy collagen it would act like an elastic to support movement and keep everything in place. With people who have EDS you could still call it an elastic although you should think more of the elastic in very, véry old grandma undies that really shouldn't be able to even call themselves elastics anymore. ⠀⠀⠀⠀⠀⠀⠀⠀ So, my daily life basicly is: 'pain', 'extreme pain' and 'I wish I was never ever born pain'. Sorry to be so blunt but that is just where I am at, at the moment. My biggest problem right now is that my neck is very unstable and my muscles are trying to keep it in place, they try to compensate for the faulty collagen. This gives severe pain plus tension headaches, jawpain and in my case trigemenial neuralgia, inflammation and irritated and pinched nerves. The muscles are trying to compensate for the instability but tend to overreact and go into spasm. I thought subluxations in my hip hurt, and they do, but this level of pain is almost unbearable. ⠀⠀⠀⠀⠀⠀⠀⠀ Continued in comments⬇️
Lol I thought this when I was diagnosed with TMJ disorder the other week another incurable condition to manage. #eds #pots #tmj #tmjd #chronicillness Repost from @theunchargeables using @RepostRegramApp - I guess I'm special that way. 🤔-CJ ------------------------------------------------ 🌟WIN unique chronic illness clothes from the Unchargeables shop! Link to giveaway in bio. ------------------------------------------------ #chronicillness #chronicillnesswarrior #chronicpain #chronicpainwarrior #migraine #fibromyalgiaawareness #spoonieproblems #spooniewarrior #chroniclife #autoimmunedisease #chronicillnessawareness #anxietywarrior #sicklife #disabledandcute #invisibleillnessawareness #disabled #zebrastrong #spooniesunite #raiseawareness #butyoudontlooksick #disabilityawareness #invisibledisability #chronicpainwarrior #parkinson #msawareness #cysticfibrosis
Uni student with sensory processing disorder 👾 SPD is ridiculously annoying when youre trying to study. If im taking notes or writting essays it generally doesnt bother me too much but if i have to just sit and listen to a lecture its nearly impossible for me to retain any information. Things constantly distract me. I re-adjust my clothes every 5 seconds, i cant ignore the sound of the washing machine, if there is a big gust of wind i notice the trees moving. Fidget spinners are literally the greatest invention for people like me. It keeps my hands busy and i find it consumes enough of my brain so that i dont get distracted while allowing me to focus on the lecture. What helps you get through boring lectures? 🤓 • • • #zebrastrong #eds #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #pots #spoonie #spoonie #spooniewarrior #invisibleillness #chronicillness #sicktofit #butyoudontlooksick #mentalhealth #mentalhealthawareness #sensoryprocessingdisorder #spd #fidgetspinner #university #studentlife #boringlecture
Me n my younger baby bear Elliot. He would probably be annoyed with me calling him that so hopefully he won’t read this 😂 #fall #festival #fallishere 🍁 #autumn #celebration #nicetobeoutside #spendtime #dowhatyoucan #and #dowhatyoucant #riseabovepain #dressup #casualdressy #gottalive #life #spoonie #mom #lovemyson #havefun 💋 #zebrastrong #edswontwin
Observing Pearson’s fruition at a neighbourhood fall festival. wasn’t a good morning for me woke up with heavy pain etc then felt sad but eventually I was able to get suited up and catch the last bit of it. I also had hope to visit with a friend later as we had not seen each other in a while. #plantpotting and enjoying #grapes from the local #garden #fallishere 🍁 #autumn #celebration #nicetobeoutside #spendtime #dowhatyoucan #and #dowhatyoucant #riseabovepain #dressup #casualdressy #gottalive #life #spoonie #mom #hesgettingshbig #holysmokes #lovemyson #zebrastrong #edswontwin
Feeling like me today so I put some makeup on! 🙌🏼It’s the little things right? 🤷🏻‍♀️ Having #chiarimalformation you never know what is in store for you that day so you take it one day at a time! However, I can say that if it wasn’t for my #pinkdrink and my amazing supplements there wouldn’t be any good days! Count down to surgery has begun! 🙌🏼 . . . . . #ehlersdanlosawareness #invisibleillnesses #chronicfatiguesyndrome #autoimmunedisease #hypermobility #hypermobile #POTS #eds #spoonie #spoonies #spooniewarrior #spooniesisters #spoonie #chiarimalformation #chiariwarrior #posturalorthostatictachycardiasyndrome #zebrastripes #zebrastrong #zebrawarrior #medicalzebra #sundayspecial #momsofinsta
Class today included these fun belay splits, and a promotion to the intermediate/advanced class! 🤩
Invisible illnesses are sometimes masked with makeup and a smile. Patients, especially women, can often be judged like the cover of a book, but the contents of our book contain so much more.
264/365 9.22.18 Here’s my gorgeous new daily companion, my #travelersnotebook created for me by @redpentravelers. The map is Scotland; the heart marks the area of the Clan of Stuart, my clan. I chose just to get my first initial stamped in the lower right corner. I am in love with the midnight blue. More pics show the inserts: this is what it looks like when the art notebook (the Annabel Lee notebook at the back, purchased at the @poemuseum )and an extra reading/commonplacebook are inside. I remove those two to make room for my fatter writer’s notebook. You can also see the pretty reinforced spine, which I think helps my EDS-clumsied fingers wrt moving notebooks and generally navigating it. I haven’t named it yet, but we are in love. #travelersnotebookinserts #fieldnotes #fieldnotesbrand #fieldnotesbrandcolors #bujo #commonplacebook #bulletjournal #plannernerd #travelersnotebooklove #egdarallanpoe #annabellee #homebound #chronicillness #2018project #apictureaday #apictureaday2018 #beyourownheroine #spooniestrong #zebrastrong #apictureaday2018carla #stuartclan #clanstuart #scotland #mapsarecool #plannerwalkthrough #notebooktherapy #leathernotebook #leathernotebookcover
A much needed weekend with great friends, great food, incredible scenery, Harry Potter magic, relaxation, sunshine, rain, fresh air, deep sleep, cream teas and my favourite person by my side. Thank you @flmackenzie and Alexander for being the best hosts ❤️
I know I’ve been posting a lot of medical stuff lately and that’s because that’s how my life has been. While I never intended for my page to be about just one thing and I still don’t. I noticed a lot of people have separate accounts for each area they want to share. Personally I’m not into that. I like using my page for sharing my life and interests, because I am more than one thing. Pluse, I feel having more than one account can easily consume to much of your time in social media. But I do still enjoy sharing other stuff and not just medical. What kind of stuff do you all like to see?
It’s such a beautiful day outside today! ☀️ It’s warm and sunny, and I had a little bit of juice left in my leg batteries, so I went outside! In the nature! My surgery is on Tuesday so I figured I should take advantage of being able to go for a little stroll while I could. My legs are jello now but it was so nice to walk through Bowring Park and it was worth it.
✨My mood today is a hands down NOPE. I have come down with a cold upon waking late today. I must have caught it from the hospital the other day, or when I was hangin, and out and about yesterday. Uhggg. I also feel as though my head may fall off my neck.. I was messing with my cervical vertebrae last night and tried fixing a subluxation and made it worse. Yay me! Anyways, I get to catch up on some TV, finish my book, drink tons of coffee, and sink into my recliner. What are your favorite tv channels? Mine are History and Travel channel! 💘☕️😴 . . . . . . . . . . . . #nope #mugglesickness #chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #IBD #IBS #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy
😻 De vez en cuando me doy EL MAYOR DE LOS GUSTOS EN MI PALADAR: . 😋CÓMO VEGETALES 🤗 .🍡🍈🌽🍆 ES MI.COMIDA FAVORITA, .🍽 Pero es justamente la que menos he tolerado los últimos años. .😷 Lo licué, Esperemos pueda tolerar siquiera un poquito. .😖 . Mientras No tengo dieta indicada ni alimentación suplementaria. ¡En lo único que me limito es en dejar de intentarlo! No me rindo. #superarlensiú .😜 . @mienfermedadinvisible . #fragilperoinquebrantable . . 🚩 www.gofundme.com/arlensiumienfermedadinvisible . PayPal mienfermedadinvisible@gmail.com . Banesco 01340447084472084378 Arlen Daza . #ehlersdanlossyndrome #dysautonomia #gastroparesls #rarediseases #ZebraStrong #fragilbutunbreakable #fragilbutunbreakable #fragilbutunbreakable #MyEdsHurts
ALLOWING MYSELF TO USE PAIN MEDICATIONS "I take pain medications now. Not because I’m weak, and not because I am an addict. I take them because they are a tool to help me fight this." Read Sarah's #myEDS story at ehlers-danlos.com/SarahH #myEDSHurts #EhlersDanlos #ChronicPain #hypermobile #hypermobility #EhlersDanlosSyndromes #pain #EDS #EDSAwareness #ChronicIllness #Spoonie #ZebraStrong #DazzleTogether #Zebra #cEDS #painawarenessmonth
I haven’t posted in a while as my bed and I have been having quality time together. I’ve just finished a run of a fabulous show but before it opened I got struck down with a cold which turned into Sinusitis, right at the busiest rehearsal stage! Production rehearsals and performances always take a lot out of me, let alone when I’ve had to push through being sick!! It’s been a case of: eat, sing, sleep, repeat! Not too much sleep though, as I have rehearsals starting tomorrow for my next performance, which is only 2 weeks away, so managing my spoon quota for the next few weeks is going to be super important!! #suckerforpunishment #eds #ehlersdanlossyndrome #ehlersdanlos #heds #hypermobility #spoons #spoonie #zebra #zebrastrong #connectivetissuedisorder #invisibleillness #invisibleillnesswarrior #chronicillness #chronicillnesswarrior #chronicfatiguesyndrome #chronicfatigue #performer #performance #spoonieperformer #bed #sleep #sick #sinusitis #sinusinfection #sleepy #singer
Just do it 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #food #warrioratheart #hardtimes #zebrawarrior #zebrastrong
My fierce papa bear. I mostly post about my mum because she’s the one who drives me around, calls doctors, argues with insurance, and 24hr a day nurses me. However my pops is just as fantastic. Although he struggles with Alzheimer’s and can’t be my crazy advocate, he still helps in every way he can. He opens bottles, brings me blankets, cracks numerous dad jokes, pushes my wheelchair, and sits quietly near by in case I need help or company. What I’ve learned from him is that no matter what we are struggling with in our lives, you are never too ill to care for others. And there are always ways to make others feel loved no matter the situation. How are you going to make someone smile today? #bestpapabearever #papabearappreciation #chronicillness #chronicillnesswarrior #invisibleillness #invisibleillnessawareness #pwme #myalgicencephalomyelitis #chronicfatiguesyndrome #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #polycysticovariansyndrome #vocalcorddysfunction #seizure #meningioma #gastroparesis #degenerativediscdisease #alzheimersawareness #spoonie #spoonielife #spooniewarrior #spooniefamily #zebra #zebrastrong
Really enjoying letting myself be free with line and color. There are proportion mistakes, but it doesn’t matter. Flawed yet fulfilled is what makes for the best art.
Gåtur med min lækre Happy... 2 år gammel! Da jeg fik hende for 4 mdr siden kunne jeg ikke trække hende ud af folden og nu går vi lange ture i skoven... Hun er min lille stjerne... 💕❤️😍 Var i øvrigt 2. gang med bid i munden - første gang var 2 min - og det var helt uden hurlumhej... 👌🏼😉😁 Naturligvis... Hun jo min Bette skat med det perfekte navn - Happy... 😍❤️💕 #vejentildetgodeliv #livetpågodtogondt #lykke #elskermitliv #kroniskesmerter #ehlosdanlos #eds #gigt #fibromyalgi #handikap #zebrastrong #ehlosdanlossyndrome   #enligmortiltre #zebramor #fibrowarrior #nyeveje #åbnedøre #spændendefremtid #meditation #spiritualitet #yoga #kundaliniyoga #ligthworker #spredlyset #islænder #icelandichorse #heste   #irishcob #tinker
I’ve been quiet on here recently. Life has been just a bit chaotic and I’ve been adjusting to being in full time grad school again + as always a full time patient. The semester started out with quite a bit of challenge but now I’ve found a new practicum/internship site that I’m sure excited about. I had to really self-advocate for it. I will be working at a treatment center for substance abuse in the detox unit. • With added stress self-care becomes even more important, even when it feels like there is no time for it. For me that has meant keeping up with my medications/infusions, doctors appointments and rest. Self-care for me also includes things like watching mindless Netflix shows, time with my partner & friends, juicing and of course trying to move my body out in nature. ☀️ what self-care practice is vital for you?
After 2 not quite the best infusions, we had one of the best ones yet. He has also progressed from only wanting to lay down to sitting up and playing games. This week it was learning how to play Pokemon for real. @idfcommunity #piawareness #primaryimmunodeficiency #zebrastrong
High pace requires defense 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #food #warrioratheart #hardtimes #zebrawarrior #zebrastrong #hallbyhandball #hallbyherr
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 #dysmotility
Day 4 of being completely bed/couch-bound. When your body decides it is time for some serious rest, it is not “giving up” when you listen to your body. By resting I am fighting twice as hard to allow my body to get ready for the days when I’m out and having adventures. I am conquering life one day at a time! #accessibility #photodescription [Sarah lying in bed] #day4 #bedbound #couchbound #conquerer #restday #nevergiveup #fightingeds #fightingpots #fightingchronicillness #fightingchronicpain #ehlersdanlossyndrome #zebrastrong #dysautonomia #posturalorthostatictachycardiasyndrome #chronicillness #chronicillnesswarrior #chronicpain #chronicpainwarrior #chronicallyextraordinary
Everything’s achievable with a little help 🖤💪🏼 #zebrastrong #ehlersdanlossyndrome
Why doesn’t this feel normal? ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Nobody knows your body better than you. You know when something doesn’t feel right. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Too many people like to tell us that that can’t possibly be true; you can’t possibly be feeling that. Those people are not living in your body. They can only measure things based on their own experiences. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Our bodies go through a lot. When you throw a #chronicillness into the mix it can get blurry between what is normal to feel and what’s just plain wrong. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ We have to listen tentatively to how our body feels and do what is best for us. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Quote from @braidsandblooms_ #theprojectpatchwork
Oops it became a quick fix. Protein pancakes, blueberry, hot raspberry, coconut yogurt 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #food #warrioratheart #hardtimes #zebrawarrior #zebrastrong
When you wear your handbag for 5 hours....Next day your wrist hurts like hell including your neck. Awesome 😟 It's so hard because only a few hours you think you're a normal person but when you've EDS you get one's comeuppance... I know I'm not healthy but I'm still sad that I can't go out for new to experience. That's the reality. . . #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 #everyBodyisbeautiful #butyoudontlooksick #fightlikeawarrior #chroniczebra
My night was horrible. My numbers were jumping all around. Sometimes skipping up to 10 beats. By the end of the day I had to be lifted into the house- I was so weak and my symptoms were too strong. I spent the night in bed sick. I even turned the lights out at 9:30pm. Today I wake up still very tired but the symptoms are in the past. . . #chronicillness #invisibledisability #disability #disabled #restlesslegsyndrome #awareness #raredisease #chronicfatigue #zebrastrong #chronicpain #disabilityawareness #mayoclinic #panicattacks #superventriculartachycardia #svt #Neurocardiogenicsyncope #ncs #narcolepsy #posturalorthostatictachycardiasyndrome #POTS #fybromyalgia #chronicillnesswarrior #spoonie #dysautonomia #servicedog #servicedoghandler #mastcellactivationsyndrome #mcas #patellafemoralsyndrome #rarediseases
Little food before it's time to check out the handball 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #food #warrioratheart #hardtimes #zebrawarrior #zebrastrong
We finally got out last night to celebrate our 16th wedding anniversary. Always great to find a restaurant that has a great choice of alcohol free cocktails (this one is elderflower and rhubarb) and a histamine friendly menu. Eating out now requires a thorough investigation before booking a table! We had a fantastic evening 🤗. #edsproblems #mastcelldisorder . . . . . . #hypermobility #eds #ehlersdanlos #ehlersdanlossyndrome #histaminefree #chronicpain #movementtherapy #weddinganniversary #datenight #pilatesforhypermobility #zebrastrong #fragilebutunbreakable
This too shall pass has been a very helpful and important phrase I tell myself with things are tough and with no route out, I can tolerate pain, discomfort and dissatisfaction and most importantly I validate my feelings but I tolerate it all calmly. I often wish I had an escape route out of this life and body and into a care free functional one but this not being possible I hold out hope and assurance this will pass even if there is a tiny improvement it is improvement none the less 🦓🕊️🌺 #chronicillness #chronicpain #invisibleillness #spoonielife #spoonie #spoonieproblems #zebrastrong #chronicillnesswarrior #ehlersdanlossyndrome #potssyndrome #potsie #osteoparosis #osteomalacia #scoliosis #fibromyalgia #gastricdysmotility #boweldamage #pelvicfloorprolapse
Preparing a new week 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #food #warrioratheart #hardtimes #zebrawarrior #zebrastrong
This poem really speaks to me about chronic illness. At first I was in denial. And I felt like I was forever running from the cloud of fatigue that would always eventually catch up. But now I’m starting to accept myself. Cut out those who don’t understand, I’m learning to pace myself and actually only say yes to the things I ACTUALLY want to. of course it’s hard to achieve these things every minute of the day. And I still often feel consumed by my sadness. But with time comes acceptance, and with it the ability to self love. ❤️ #selflove #selfcare #mindfulness #poems #myalgicencephalomyelitis #invisibleillness #chronicillness #zebrastrong #ehlersdanlossyndrome #hypermobility #chronicpain #chronicpainwarrior
Bon appétit !🍁 Au menu , chili con carne maison sans matière grasse et viande hachée 5% , riz de camargue et ensuite salade frisée ! 🥘🍽 #touraine #tours #fondettes #challengeherbalife herbalife #coachbienetre #bilangratuit #eathealthy #mangersain #biendanssoncorps #perdredupoid #prendredelamasse #stopauxkilos #finislesregimes #healthy #reequilibragealimentaire #complementderevenu #sed #eds #zebrastrong
Hello , bon dimanche à tous...🍃 Non ce n est pas le petit dej exemplaire ce matin ,pas healthy , mais j en avais envie. Je suis réglo le reste du tps alors je me le suis autorisé 🥐☕ 1 croissant, 1 bol de ricore ss,et mon verre d aloe #touraine #tours #fondettes #petitdej #nothealthy #plaisirdumatin #reequilibragealimentaire #sed #eds #zebrastrong
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
Great effort today lads. Even with the old timer playing. Unlucky not to get the W #semifinal #tufc #theresonlyonethornbury @thornburyutdfc #zebras #zebrastrong #zebrastripes
Despite my dyslexia, I would like to write by hand. A new exercise diary and a diary to get some thoughts to become concrete and to progress with some goals. 🏋️‍♀️🏋️‍♀️🏋️‍♀️#fightingspirit #fitness #eds #forlife #zebrapower #warrioratheart #hardtimes #zebrawarrior #zebrastrong
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