#ehlersdanlossyndrome

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What a disastrous day!!! It started well with a lazy morning with my favourite pooches then coffee out with the parents and the pooches. Then on the way home the dogs went mad at some protesters at the roundabout and made me jump out of my skin. I haven't had enough salt today (I hadn't realised til this chain of events began) and my heart rate shot up to around 130 bpm roughly. Due to the lack of salt, my heart rate did not come down so when I tried to get out of the car, I met the gravel on the floor!!! I haven't hurt anything other than my pride (and scared my parents half to death!) But the crash to the floor led by my bad leg has caused a split in my brace! Guess where my spare is...? England! So we have gaffer taped it and hope for the best til I at back to my house on 4th January!!! Oops! #posturalorthostatictachycardiasyndrome #spoonielife #ehlersdanlossyndrome #passthesalt Hey @mscrazybunnylady - really should've gone to the pharmacy and asked about the salt tablets shouldn't I?! 😂
DON’T SAY THESE🤢 _ TW// mention of eating/food. Current place is laying on the couch in agony, so please enjoy this photo from better times. I had quite a few different scheduled posts, but in the midst of my GI flare I decided to fit my mood with this post. Here’s some things I’ve been told this week that everyone with a GI condition is tired of hearing: _ •Have you tried being vegan? _ •Have you tried exercising after you eat? _ •You’re full already? Are you sure? _ •Why aren’t you eating? _ •I’ve had a stomach ache before too, I get it. _ •Maybe if its your favorite food you’ll be able to eat. _ •I can’t imagine not being able to eat whatever I want. _ Imagine if you had the stomach flu... but it never went away. Instead every day you woke up nauseous, in pain, and bloated. But you want to eat. You’re STARVING. You’re just unable to get what you need. That’s how I can describe Gastroparesis in a very basic form. _ People with GI conditions want to eat. I guarantee we’ve tried almost everything you’re going to suggest. I know you want to help, and you’re just trying to be nice. So, how can you help? Just. Be. Supportive. Ask if that person needs anything, have their back when you go out to eat (this can be a hard place), don’t force them to eat, and just be patient. Try to listen to their needs whatever they may be. If they want to try to eat something, let them. If they don’t, then let them. Every day is a new day and a different day for anyone with a chronic health condition.
I think I need to put some Windex in my gym back before I try this video-in-the-mirror thing again 😂 Doing things I’m not good at until I’m good at them. • • • #strongoverskinny #girlswhopowerlift #strongerthanyesterday #deadlifttillimdead #momswholift #gwplgear #squats #zerchersquats #stifflegdeadlifts #legday #progress #weightloss #postpartum #powerlifting #powerlifter #nevergiveup #ehlersdanlossyndrome #bodybuilding #powerbuilding #skynet #blestcoaching
For some reason Josie isn’t too impressed with me serenading her with @leannrimes songs 🎶 from my youth while she is still lazy-dogging it in bed... 🤷🏼‍♀️ Meanwhile, I’ve already woken up, gone 🚽, taken 💊, and left a voicemail for one of my doctors! 👩🏾‍⚕️ Up and at ‘em, #nursejosie !!! Let’s dominate this week!!! 💜💪🙌😉✨🐾 . . . . #chronicillness #autoimmunedisease #inflammatoryboweldisease #ibdwarrior #ulcerativecolitis #jpouch #chronicpain #intrathecalpainpump #depression #migraines #invisibleillness #nocolonstillrollin #crohnscolitisfoundation #crohnsdisease #crohns #painmanagement #POTS #posturalorthostatictachycardiasyndrome #EDS #ehlersdanlossyndrome #medicalmarijuana #cannabis #marylandmedicalcannabispatient #mentalhealth #patientadvocate #butyoudontlooksick #spoonielife #professionalpatient #teambadass 🥄
PoP Chrismas Scrimmage! Had a lot of fun and learned even more - I scored my first couple of points! I also had my first penalty in a long long time, at the last jam of the first game. Anyway, I'm proud of myself for doing the things I did. 📸 Jurifoto #rollerderby #derby #christmas #dressup #penaltybox #starpass #pivot #parliamentofpain #quadskates #eds #ehlersdanlossyndrome #thighhighs #red #curlyhair #ootd
OUR BODIES MATTER TOO ✨ —————— I know I have posted about this a fair few times now but how can I not when it’s such an important message to spread? When it seems to be quite controversial about using diverse models? We are not trying to change all of @victoriassecret or the fashion industry in general and this is not about size/weight in particular either. It’s about how we can ALL be included in this ‘fantasy’ that is described to us. It’s about how the advertisements and photos that are shown to us on a daily basis should not be one particular body type. Why can’t we see all types of REAL people rather than these photoshopped ‘perfect’ people with absolutely no blemishes, stretchmarks, cellulite, acne, wrinkles, belly rolls etc?! At the moment, the fantasy that is being sold to us can easily make us feel inadequate and so insecure. So we are expected to buy these clothes, lingerie, products to make ourselves look like the model displaying them. What if the model puts theirselves through hell just to get that image perfect? What if the model doesn’t even look like that? What message is that saying? —————— Companies make money from our insecurity. Image if we didn’t need their miracle cures and learnt to love ourselves how we are? It doesn’t matter what you look like; you deserve to be represented. @love_disfigure @nunude_official @be_real_campaign @dove • • • • • • • • • #ehlersdanlossyndrome #eds #stoma #ileostomy #ostomy #ostomyawareness #chronicillness #ostomate #invisibledisability #awareness #invisibleillness #bodypositivity #bodyconfidence #loveyourbody #effyourbeautystandards #LoveAnyBODY #everyBODY #embraceyourbody #selflove #selfconfidence #mentalhealth #positivity #diversity #empowerment #selfloveevent #diverse #diversity #inspiration
Spent some time at the happiest place on earth yesterday and was feeling a little sassy. #trekkie #betruetoyourself #findthecane #ehlersdanlossyndrome #sempergumby #gumbyonthego #ehlersdanlos #spoonie #respectallnerdoms #starwars
Ahhhhh new books! Has anyone read this yet?? So excited to get work done and over with, enjoy the fresh snow and read with my fur baby 🐶 Now that winter has officially set in, I’m ready to have time for contemplation, reflection and expanding my mind. I had made my mantra this year to be “sustainability” 🔮 Part of sustainability is self care, so I’m excited to explore this facet and appreciate it a little more 💕 What is part of your own self care ritual? #selfcare #selfcarethreads #thespiritalmanac #book #expandyourmind #whatsyourritual #rituallifestyle #chronicillness #ehlersdanlossyndrome #hypermobileyogi #hypermobileehlersdanlossyndrome #letsgrowtogether #connect
I’m looking for any and all natural remedies to ease pain and inflammation. My spine/pain doc, who’s also a anesthesiologists, recommended turmeric and black pepper. I hear ginger is good too. So here we go. 2 drops 1-2 times a day in a gel cap!
Beautiful day! When I receive messages from people on social media simply saying “you’ve given me hope” it makes my heart sing. It’s messages like this that make me love what I do. If I can spread a little hope, awareness and belief in our movement capabilities, that’s all I can ask for. I am truly grateful for the feedback. My personal journey, going from debilitating chronic pain to pretty much pain free through regular, appropriate movement therapy - I know there are possibilities for us all. #zebrastrong . . . . . . . . #ehlersdanlos #hypermobility #eds #chronicpain #pain #pilates #movementtherapy #pilatesforhypermobility #ehlersdanlossyndrome #edsawareness #exercise #gratitude
My handler and I did it again! We officially have 2 bachelors degrees! If you remember in May we graduated with our BS in Mechanical Engineering! On Saturday we graduated with our BS in Computer Engineering! It has been a long and bumpy road but we did it! My handler is the first person at her university to get both a ME and CPE degrees! They are very thankful that I have kept them safe and in school! #OffToGradSchool #eds #ehlersdanlossyndrome #pots #type3 #posturalorthostatictachycardiasyndrome #hypermobilitysyndrome #servicedog #graduation #wedidit #success #mobilityservicedog #medicalalertdog #uncc #universityofnorthcarolinaatcharlotte #engineering #tilite #wheelchairuser
What an amazing time we all had at our Christmas Meeting last week in Leeds! It was lovely meeting new members, seeing you all ticket hunting on the tombola, chatting and enjoying all the nibbles you brought with you then having our obligatory group photo we all had so many laughs (photo evidence says it all for me) amongst our wonderful Dazzle of Zebras.⠀ ⠀ We have raised a fantastic £318.50 to support EDS UK so thank you to all involved!⠀ ⠀ A sincere, heartfelt thank you to each and everyone one of you who came with your family and friends, making this such a successful event for us all. You’re all wonderful and I think the world of each and every one of you.⠀ ⠀ Let’s make 2019 our best year yet!"⠀ ⠀ ~ Lisa Backhouse, Volunteer Area Coordinator for Leeds⠀ ⠀ Join your local support group today - membership is free! Visit ehlers-danlos.org⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #EDS#ehlersdanlos#ehlersdanlossyndrome#hypermobile#hypermobility#hypermobilitysyndrome#heds#hsd#hypermobilityspectrumdisorder#chronicpain#chronicillness#support#supportgroups
I am such a winter person - sweaters, boots, gloves... I LOVE it! And now as I hear of some early snowfall happening around the world, I'm taken back to this throwback image of the few days I was fortunate enough to spend in Kashmir in January this year. . PC @footprintsnoboundaries #snow #throwback #snowfall #gulmarg #kashmir #everydayindia #incredibleindia #capturestreets #winter #neverstopexploring #travel #wanderlust #femaletravel #white #sleigh #travelgram #travelmore #yourshot_india #endometriosis #ehlersdanlossyndrome #kashmirtourism #sidthewanderer #footprintsnoboundaries #mountainstories #CNTGiveItAShot #NGTIndia #thevisualyatra #_soi #natgeoyourshot #travelphotography
Got the fun virus kind the doc said! My chest hurts so bad now I literally curl up into a ball when I cough. When the coughing does come it’s in long fits and it has me close to throwing up every time.... this is not a fun week before the holidays. Saturday was pretty bad... that includes Friday night as well. I had an asthma attack and from there it went down hill. I could hardly breathe let alone move. Still I found all the strength I had and made it to the ER. Got in right away though thankfully and got a good breathing treatment. Sucked up a big bag of fluids since my stomach hasn’t felt like holding down lots of liquids I’m definitely glad to have gotten that. Now I just gotta take all my meds and hopefully get better. I see my regular doctor today too for a check up. Stay strong everyone! Even when the time looks bleak there is someone near you ready to lend a helping hand or a listening ear. #spoonie #spoonielife #spooniewarrior #chronicillness #chronicpain #chronicfatigue #staypositive #blessed #spreadawareness #asthma #fibromyalgia #invisibleillness #anxiety #socialanxiety #sensoryprocessingdisorder #ehlersdanlossyndrome #texas #staystrong #zebra #spooniesisters
🌿Happy Monday 🌿 It’s that time of year, parties, work that needs to be completed before Christmas, gifts to get, food to buy. I find it all to much. It’s a highlighter to all the things Im unable to do and like there is a buzzing cloud of anxiety every where and wanting to swallow me up. Im trying to ignore it. I’m trying to say no with out guilt. I’m trying to join in, in bite size chunks. I’m trying to be kind to myself. This week I have to be at an event, I have been working towards it for months and I still have a lot to do. I need to be on form. I’m going to take things slow and eat well, and try and rest. Im going to try my best. Im going to get sh!t done! (And look after myself)
Not all days are easy. Today shout out goes to this young lady. I was reading her story and it really inspired me. We all start somewhere when we begin again. My point is that she never gave up. Bones may break. Blood may spill but scars will heal and become a part of our journey. Repost from @chronically_ry using @RepostRegramApp - Some days are just hard. Today was one of those days. I worked 7pm-7am and then rushed home to jump into bed so I could nap a couple hours before my doctor’s appointment at 11:15. Well my body had other ideas. (what else is new?) It took me forever to doze off when I got home. I slept about an hour and a half, ran to my appointment, and sat in the exam room until he could finally see me...at 12:45. 🤦🏻‍♀️ Rushed back home after my appointment, jumped back into bed and fell right asleep...for about 2 hours. Now I’m back for another 7pm-7am shift tonight and I am RIDING that struggle bus. Just a few years ago I was able to switch my sleep schedule at the drop of a hat and survive on little to no sleep without any issues. Now it leaves me dizzy, nauseated, and with this throbbing full body pain that makes moving at all agonizing. This morning felt like that. And I broke. I broke because I felt awful. I was missing my people and feeling sorry for myself. I broke because I’m 26 years old and I’m getting fitted for a wheelchair because my legs don’t work. I broke because I love my job so much, but it’s killing me and I’m not sure how much longer I can keep it up. I broke because sometimes, you just have to in order to stay sane. But then I pulled on those old familiar navy blue scrubs, I wiped my tears, and I drank a shit ton of coffee. I limped into my department and I took care of my patients on what for some was the worst day of their lives. And not a single one could tell that only a few hours before, their nurse was struggling to walk down the stairs in her house. Sometimes, life is hard. And that’s okay. Embrace your good days and your bad ones. Drink your coffee. Put on your big girl panties. And keep moving forward. #disability #ehlersdanlossyndrome #eds #ehlersdanlos #posturalorthostatictachycardiasyndrome #wheelchairbodybuilding
I think this piece will always be one of my favourites. I dislocated my shoulder really badly again this morning, well I woke up with it dislocated so I have no idea how long it was out so I'm still unable to draw. Hopefully in the new year I'll get back into it! #vscocam #vsco #ehlersdanlos #ehlersdanlossyndrome #chronicillness #Spoonie #tattoo #tattoodesign #ink #BlackInk #unipin #fineliner #blackandwhite #mandala #blxckmandalas #fabercastell #art #drawing #disabledartist #jadelanefield #dotwork #artwork #mandalaart #beautiful #style #design #drawnbyhand
Haven't posted a scar update in a while. My knee is still I'm pain 24/7, its actually more painful since I got surgery on it 👌 but at least it's not dislocated??!! #postsurgery #surgicalscar #eds #ehlersdanlossyndrome #dislocatedknee
Here’s a picture of me and my dog Mailei. This was a very rare occasion where I’ve gotten ready, brushed my hair, fixed my face, and tried to look human or close to it. What you don’t see is how my heart rate kept shooting in the 150s when I was showering. How I had to get out and lie on the floor for 20 minutes to get it to go down. How I had to fight with it for few hours before I could actually leave my house. How I had to put on my shoulder brace beneath my sweater. How I felt dizzy and nauseous behind my smile. How standing makes me feel terrible. This is just a friendly reminder that those of us with #chronicillness try to put our best face forward even though we may be suffering behind a smile. You can’t see my #heartrate going up to crazy levels. You can’t see my fatigue (okay maybe a little). You can’t see my nausea, my joint pain, my dizziness. Just because I don’t look sick, doesn’t mean that I am well. You never know what someone is going through. Please be kind.❤️➖➖➖➖➖➖➖➖➖➖➖➖➖ #chronicillnessishard #chronicillnessdoesntdefineme #chronicillnesswarrior #potssyndrome #pots #ehlersdanlossyndrome #tos #tmjd #butyoudontlooksick #invisibleillness #potsproblems #dysautonomia #autonomicnervoussystem #ijustwannafeellikemyselfagain #irondeficiencyanemia
After a few years break, finally got my card making mojo back. Alternative goth christmas card stamped image by Santorio.My first alternative christmas card. Baubles card : embossed snowflake back ground by @crafterscompuk and the snowflake bauble. The next card was done for a friends relation who has just lost a loved one ,these cards I always find hard to do . Child and sled is for a young child , different medias where used. Now to make more whilst my dog is on my lap. And am stuck indoors until am on medications for my Mast cell. #zebrawarrior #mastcellactivationdisorder #chronicillness #ehlersdanlossyndrome #rarediseases #cardmaking #crafterscompanion #geminidiecutting
Happy Monday! I’ll be doing this while all the fluffing hoomans go to work! 😹😸 #happyfluffingmonday 😸 . . . #cats_of_instagram #cat #streetrescue #catsofinstagram #specialneedscat #felinecutaneousasthenia #ehlersdanlossyndrome
I swear I’m alive! I have been spending a few days with @memberly77 for a very tubestie Christmas! I’ve been enjoying our time together rather than posting but I promise lots of photos have been taken! We have gone to build a Bear, the Botanical Gardens, and Sunflower Cafe where I had the best gluten free vegan pad Thai!!! This has honestly been one of the best few days ever and I cannot believe a year ago is when Mary and I met in real life for the first time!! It’s crazy how this community can bring people together and I honestly am so blessed to have found such a great bestie and support system 🤟🏻❤️ #chronicillness #servicedog #atlantabotanicalgardens #buildabear #goldenretriever #tubestie #christmas #eds #ehlersdanlossyndrome #fibromyalgia #mcad #pots #glutenfree #celiac #seizurealert
Hop On part en kiné 😊 Aujourd'hui je me sens plutôt pas trop mal 😀 #syndromeehlersdanlos #ehlersdanlossyndrome #lymphoedeme #zebrawarrior #zebrastrong #fatigue
Feeling better than I was last night if you saw my story. Physically I’m not too bad today, general rib pain but other than that, nothing is majorly hurting. Mentally I’m still not the best but a lot better than I have been this weekend. All weekend I just felt sad and angry for pretty much no reason? Who knows! Maybe I’ll figure it out at some point... In other news I found out I have 4 days left on this work contract, 1 studio day left and then I actually get my first break in 4 months 😁 #edsawareness #ehlersdanlossyndrome #ehlersdanlosawareness #myedsdiary #chronicillness #mentalhealth
This quote speaks volumes to me. I sat in tears watching this scene from Christmas with the Coopers. It felt like he was talking to me! I feel like I’m living in some kind of nightmare, where I’m stuck and can’t get moving again. Where my life is falling to pieces all around me. But one day I will look back at this part of my life and it will simple be an anecdote within the bigger story of my life. - I take great comfort in knowing that this time will pass. Nothing is permanent. #survivingtheundiagnosed #chronicpainwarrior #chronicpain #chronicpainawareness #ehlersdanlossyndrome #hypermobilitysyndrome #invisibleillness #chronicillness #invisibledisability #disabilityadvocate #mentalhealthquotes #quotestagram #quotetoliveby #quotesaboutlife #livingmybestlife #thoughtoftheday #quotestoinspire #inspireothers #inspirationalquotes #christmaswiththecoopers #mentalhealthawareness #itsokaynottobeokay #mondayquotes #bereavement #depressionquotes #recoveryispossible #powerofchoice #powerofpositivity #positivequotes #gratitudejournal
Have you ever wanted to do a charity fundraiser but thought your illness would get in the way? Due to my recent fundraising cause I have made a new post to give you some cool ideas on how to do charity fundraisers whilst battling chronic illness *link in bio* ———————————————— #charity #charityevent #charityfundraiser #charitywork #charityfundraising #charitychallenge #charityproject #charityprojects #fundraisingforcharity #fundraisingideas #fundraiser #fundraiseridea #chronicillness #chronicillnesses #chronicillnessawareness #invisibleillness #invisibleillnessawareness #chronicillnessblogger #chronicillnessblog #chronicblogs #spooniecommunity #chronicillnesscommunity #communitycharity #ehlersdanlossyndrome #spoonielife #chronicillnesslife #chronicpain #medicalzebras #medicalzebra
Because I been an extra good boy while Mum is ill I've been allowed to open a #christmas #present early. Its a tradition for christmas eve within the family; but Mum said today was ok too for me. I got a yummy #christmaspudding Which is from Tesco. It was super nice. We didn't film that part as the film cut off. Any of my workmates had the luck of getting a early christmas present too; without pinching from the tree? Mum is still ill so its another nursing day. I dont mind these days though as lots of cuddles inbetween jobs I do for her. #assistancedog #assistancedoguk #blacklab #dogwithajob #servicedog #butyoudontlooksick #invisbledisability #vEDS #bendy #fatigue #ehlersdanlossyndrome #disability #POTS  #posturalorthostatictachycardiasyndrome
What’s got me up at 5AM? The pain I wasn’t able to sleep through last night or any of this morning. This pain is like nothing I’ve known. #brachialplexusinjury #cervicalradiculopathy #spodylosis #tendinosos #spoonie #ehlersdanlossyndrome #degenerativediscdisease #neurosurgeon #consult
Well there’s really no other choice when now BOTH feet are injured. Here’s to continuing to roll with the punches this year. 🤦🏻‍♀️ Keeping my head up and planning for how I’m going to start focus on strength training my whole body after resting. #eds #ehlersdanlossyndrome #strengthenjoints #hypermobilitysyndrome #rollwiththepunches #connectivetissuedisorder
Well I managed to clean the place up with my love @justfindingm3 , and I’m already aching all over with shooting pains round my ribs and shoulders🙄 Knee is still recovering but much less swollen and not too sore to walk on now. We got a new washing machine today so being rather excited to adult again and do washing. I’m having a rest with the kitty whilst waiting for painkillers to settle in and slowly sorting through clothes. All this whilst waiting for boiler repair for the second time in 2 weeks 😒 can’t wait to get the place back in order and a basic routine! #adulting #newwashingmachine #cleaning #aching #sorenow #rest #painkillers #boilerisbroken #waiting #order #routine #basicroutine #adultingwhensick #chronicillness #chronicpain #fatigue #chronicfatigue #livingwithachronicillness #fibromyalgia #ehlersdanlossyndrome #hypermobility #disability #younganddisabled #disabled #proudzebra #spoonie #youngspoonie #spoonieproblems #awareness
Got through the day 🙌🏼🙌🏼🙌🏼 tired and sore but my mood has improved a bit so that’s a win in my book 😘 no makeup and bags under my eyes permanently from very little sleep 💤 I wake up every damn night all night 😒 mixture of EDS,sleep disorder,Mast Cells and night terror from my PTSD 😩 got things done around here and watched a movie with my little dude now early to bed 🛌 and meditation 🧘‍♀️ in my cosy space with gorgeous essential oils diffusing 💓 #depressionsucks #ehlersdanlossyndrome #myoilylife #doterra #down_our_oily_lane #essentialoils #madeitthroughtheday got to love the awesome Queensland curls 🙌🏼🙌🏼🙌🏼 brought to you by humidity plus and rain 😘
Story of my life...A life with Ehlers Danlos Syndrome 😔 I want to say thank you for all the love and support I get! You are amazing! ❤❤ #eds #ehlersdanlossyndrome #raiseawareness #edswarrior
Today my #selfcare was simply going through 3 boxes of tissues, sneezing a gazillion times, and trying to get over this crud. This is a classic example of how other people don’t always realize how their actions affect the #immunocompromised population. They get the sniffles. I get an all out throbbing headache, earache, sinus infection war. I’ve been making more trips into the outside world as of late and this is the result. I’m not sorry I went out. I still loved looking at my #christmastree lights and cuddling the puppies tonight. I just feel most hellish at the moment. Time for some @sambucol #sambucol #vicksvaporub #icebag and rest. I have therapy in less than 5 hours — sleep is elusive due to not breathing through my nose and the constant nose blowing and sneeze orchestra. Rick got hit too but only a sinus headache. He’s sleeping through my blowing and sneezing but the puppers are cuddling me and jumping to attention at each sneeze. #selfcare #selfcareeveryday #selflove #selflovejourney #agoraphobia #bodypositive #eds #ehlersdanlossyndrome #headcold #healingjourney #findingjoyinthelittlethings #mentalhealthawareness #mentalhealthadvocate #dysautonomia #potsie ❤️🐾🎄🦓
Today my #selfcare was simply going through 3 boxes of tissues, sneezing a gazillion times, and trying to get over this crud. This is a classic example of how other people don’t always realize how their actions affect the #immunocompromised population. They get the sniffles. I get an all out throbbing headache, earache, sinus infection war. I’ve been making more trips into the outside world as of late and this is the result. I’m not sorry I went out. I still loved looking at my #christmastree lights and cuddling the puppies tonight. I just feel most hellish at the moment. Time for some @sambucol #sambucol #vicksvaporub #icebag and rest. I have therapy in less than 5 hours — sleep is elusive due to not breathing through my nose and the constant nose blowing and sneeze orchestra. Rick got hit too but only a sinus headache. He’s sleeping through my blowing and sneezing but the puppers are cuddling me and jumping to attention at each sneeze. #selfcare #selfcareeveryday #selflove #selflovejourney #agoraphobia #bodypositive #eds #ehlersdanlossyndrome #headcold #healingjourney #findingjoyinthelittlethings #mentalhealthawareness #invisibleillness #invisibledisability #butyoudontlooksick #chronicillness #chronicpain #mentalhealthadvocate #dysautonomia #potsie ❤️🐾🎄🦓
Thanks Dee for the new look. Wearing my new Ted Baker trousers which are leather dressed as pony, which amused me. Jacket by desquared and top, shoes and necklace by Vivienne Westwood. #365daysofchronicillness #ehlersdanlossyndrome #zebrastrong #tedbaker #desquared #viviennewestwoodofficial #viviennewestwoodworldsend #Viviennewestwood #individualstyle #individuality
Taken last Wednesday. I got new glasses and a haircut which actually made me feel human! I love my new glasses, this is one of the two pairs, even though they cost a lot more than I bargained for. Due to EDS and medication my right eye has changed shape and got a bit worse vision wise. The optician reminded me that if I get any sudden big changes in vision go straight to an opticians or a&e as it might mean my retinas have detached, oh the joys of chronic illness!!!! As always my fabulous friend and hairdresser @deebainborough always makes me feel better and looking sharper. Wearing my new trousers by Ted baker, which are leather dressed as pony. #365daysofchronicillness #ehlersdanlossyndrome #pots #chronicfatigue #fibromyalgia #depression #PTSD #anxiety #zebrastrong #viviennewestwoodofficial #viviennewestwoodgoldlabel #tedbaker #desquared #newhair #newglasses #individualstyle #individuality
Looking back over old photos and finding you always sat like a zebra and the clues were right in front of us! #ehlersdanlossyndrome #eds #geneticdisease
Taken about 5 weeks ago. The last few weeks have been a whirlwind. Tbh, this time of year is tough for me, I find it overwhelming not to mention a painful reminder of losing Korky. I have been struggling physically with regular illness on top of chronic illnesses which really takes it out of me. I did however go to Egypt at the end of November for a week with family. It was wonderful to relax in the sun. #365daysofchronicillness #365dayswithchronicillness #ehlersdanlossyndrome #me #chronicfatigue #pots #fibromyalgia #depression #anxiety #zebrastrong #viviennewestwoodoffical #viviennewestwoodanglomania #tartan #individualstyle #individuality
It's ok to live in both. But important to see yourself as you are - a beautiful light in this world. Sometimes shining. Sometimes hidden. But always there. Thanks @kat.john
Feeling just a little ready for winter vacation hehe! Only 5 days of work left! Then 2 luxurious weeks of whatever I want. Can't wait! So much work to accomplish before then, but I'll do what I can! Busy busy. This last week has been the worst (lasting) flare I've had in months. I've been pretty much in my wheelchair the entire time since last Monday's therapy appointment. I've never needed to use my chair so much. This will pass. I have my second therapy appointment tomorrow. We are actually supposed to start the CBT activities (last time was just getting to know you questions). I'm hoping that being out and about does not exacerbate my flare as it's just now starting to calm down. Excited to see what CBT has in store! My neuro appt. Friday went well. My migraines have been cut in half with the Topamax. So, next step is upping Sumatriptan dose to try to stop the migraines sooner before they turn into 4 day ordeals. Another good step. I feel like everything is pretty well as managed as it can be. Yet, my body is still an aching, sloppy subluxing mess. Nevertheless, I'm trying to stay hopeful because we are still trying new things and I have doctors who are attempting to help. Plus the amazing support from my husband. AND I'm so close to a well-deserved vacation! 😁 . . [ID: April, a white female with brown hair in a messy bun, wearing glasses and a light pink sweater is smiling and holding a piece of computer paper that says Countdown to Vacation. There is a picture of a gift box with the numbers two through four in each section and the number one is on the gift bow. There is also a Christmas tree drawn on the paper. Behind April is a white curtain.]
My massage therapist posted this through my door, my Dad got me a voucher for 6 sessions! 😊 so chuffed! This sports and remedial massage therapist/ acupuncturist is amazing! #chronicillness #massage #acupuncture #ehlersdanlossyndrome
With the new day comes new strength and new thoughts - Eleanor Roosevelt Things that have happened today (well technically yesterday at this point) We packed for Texas. My hair was washed and I took a bath. Nolan has a baseball game (actually tournament). And in the time I was there I heard the statement “I have mono” from one of his teammates. Ohhhh noooooo, please let this be joke (don’t see how or why it would be) but they all share things in the dugout and hangout together all the time and we all know where this is going if that statement was indeed true. Also I am very happy to report that I would now consider my arm to be at 90-95% functioning. The rest will come back as I gain muscles back. And I actually think my foot might be functioning better. Hard to explain as it is still just as floppy as ever and my legs still keep giving out and my walking is still really unsteady. And I really don’t have much better control of it so idk but maybe it is or maybe it isn’t. Total side not but people in public get really freaked out when I loose my balance or trip. Especially since I have been wearing the neck brace. I mean if I fall with the neck brace on or if I fell before it, I am going to end up in the same place, on the ground. Even more of a side note, my back seriously sounds like popcorn all day. I probably pop it as much as I used to my neck (now it is 1-4 times a day, just with what tilt and turning I do) and I think I only notice my back as compared to my neck because 1) it is so much louder 2) it takes more effort 3) it actually still kind of hurts when it goes back in (just like everything else as it happens more and more, it hurts less and less) Also have been thinking a lot about the past and my neck/headache/all the things. But I need to fall asleep because it is now 1 AM so I will talk about that tomorrow or today depending on how you look at things (if I actually remember).
Teaching through play... . . This gosling has hypermobility in his joints but especially in his hands. Here we are playing "Trouble" over the peanut ball to encourage shoulder strength and stability, and hand strength whilst also educating about joint protection at the same time. . . Did you know that hypermobility in the finger and thumb joints can lead to difficulties with hand strength and fatigue and so can make handwriting, doing up clothing fasteners or using cutlery, amongst other things, difficult?
Here's to Chantelle 👉 @chantellethongtattoos , 3 months ago we were lucky enough to meet this amazing women when she came to Upwell. Chantelle suffered chronic pain and fatigue, and hadn't been able to work for 4 months. Most days she couldn't even get out of bed and felt like she had to give up the dream career she had built as an incredibly successful (and famous 🤗) tattoo artist. 💎 And then this happened...👉 ---------------------- From @chantellethongtattoos 👇 So here it is. As most a lot of you know, I have had some health issues the past 6 months. I was in bed for at least 3 months straight, in and out of hospital, having tests done and it seemed that nothing was improving. I was put onto an amazing osteo who recommended @ashleighlani The best physio in the whole entire world. I ended up with a team supporting me, encouraging positive thinking and being there for me when I would fall. Not getting better was not an option and the best part was, I was going to heal myself with exercise and mindfulness. I have learnt so much throughout this time...patience, self love and even the importance of only giving your time to those who are always there for you. The next chapter is continuing with my program while introducing more work in. I am excited to celebrate each little milestone and get back to all of you who have been patiently waiting. One thing I ask is that I do want to put this behind me and not have to talk about it and relive it. Moving upwards and onwards. Thank you all for your understanding and to my amazing fiancé for being there for me 110% of the time. How lucky I am to be marrying you. @_missmack 💎 👉 Amazing work to our inspiring physio @ashleighlani who has invested everything into Chan and to @_missmack and Chantelle's pals for being the most supportive team ever! 👋🤩
Off to the physiotherapist to locate a nerveproblem that makes my fingers and arm go numb from time to time. After that I'm off to do something I thought I wasn't ready for but that feels kind of good and kind of hard at the same time. I'll tell you about that later, right now I want to keep it a secret because I don't want to say anything about something that might not happen. I'm nervous tho! And that's an unfamiliar feeling 😅🙌🏻 #hopingforagoodday
Good morning from my old work home where it’s beginning to look a lot like Christmas! 🥰🎄 Here for my SIBO test this morning which is a very common comorbidity for all dysautonomias. If I test positive I should be able to treat it or at least manage it and reduce the symptoms of my illness. If I don’t have it it’s good to know and I’ll be one test closer to the answer to getting my health back to balance. The test itself is not fun though. I’ve been eating nothing but plain rice for the last two days and shortly I’ll have to swallow a cup full of sugar and take a breath test every 20 minutes for the next two hours to measure how it reacts to my body! Sugar normally makes me feel so dizzy and unwell because of my PoTS so wish me luck! 🤞🏻😬🙏🏻• • • • • • • #eds #ehlersdanlos #pots #potsrecovery #cfsme #cfsmerecovery #cfsrecovery #spooniestrong #spoonie #sibo #zebra #zebrastrong #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #invisibleillness #chronicillness #chronicillnesswarrior #sibotest #sibo
The Velcro on a wrist splint can really make things difficult if you’re a #knitter or #crafter . Protect your crafty creations from damage with one of our splint #Kuvrs
I find many stripey things on my travels but forget to share....sorry! Here is some of my latest stripey finds from @primark my fave has to be photo 1, not only is this zebra skirt priced at just £4, it is also stretchy and pull on, so for folks like me that have trouble not only with fastenings but with stomach issues, this is perfect. No worries about zips or buttons, and no tight fabric to make my stomach hurt more than it already does. I also found some funky zebra earrings in there too! Perfect for those zebras that only want a add a few stripes to their outfit! @ehlersdanlosuk #ehlersdanlos #ehlersdanlossyndrome #ehlersdanloszebra #zebra #zebraprint #zebraskirt #zebraclothing #zebraearrings #zebraaccessories #accessories #everythinghurts #everythingdislocates #everythingzebra #blackandwhite #stripes #stripeychristmas #itllbestripeythischristmas
KT tape for the win! It's hard to get a picture of it myself, but you can see a bit of it! Hopefully the tape and my pillow nest will keep them in place tonight. Swipe 👉to see my cat. 😍 Can you spot her in the first pic?
My new (and new favourite) Zebra mug from @cathkidston_ltd I couldn't resist treating myself to this, once I laid my eyes on it, I just had to have it! So another Zebra mug for my collection, building up nicely now, all different sizes which is great when you want a huge hot chocolate or a small cuppa, so much choice! #zmug #alphabet #alphabetmug #zebramug #mug #cathkidston #cathkidstonmug #lovecathkidston #zebra #zisforzebra #ehlersdanlos #ehlersdanloszebra #ehlersdanlossyndrome #lovethyzebra #lovethyzebra 🦓 #theofficialzebraspotter #officialzebraspotter #zebraspotting #homeware #kitchware #tableware #dining #drinking #cup #cuppa
I finally finished the pants and top I've been working on for the last few days! I'm planning to wear them together to my first gay wedding next month - which I'm very excited about! (Aside from the location which will be unreasonably hot) . . I'm finally starting to get back into crafts and sewing, which is great. The last week has been better for my symptoms because the weather has been cooler, but the hot weather before that was really messing me up. It turns out that when your blood vessels are stretchy, heat makes that worse and POTS symptoms are exacerbated. Oh, and having the heat relax your muscles is not good when your ligaments are useless. So I've been having a whole lot of dislocations in my large joints. . The cardiologist is pretty convinced that I have secondary POTS as a result of EDS. And my GP is also pretty certain of both of these diagnoses too. I'm still waiting for my genetics appointment, but my GP has told me not to hold my breath on that. She's happy to say that she's confident in this diagnosis unless proven otherwise at a later date. . I'm also being referred to a gastroenterologist because the digestive issues that I developed months ago have really led to a return to disordered eating habits. Not for the purpose of losing weight, but because eating less and eating very specific foods has meant that I can reduce my symptoms. But naturally, this change has led to a dramatic weight loss. My psychiatrist has also given me the name of a psychologist to contact in order to help work through that. . Lots has been going on in the health realm, I suppose. I'm starting to adjust mentally though to the whole chronic illness and disability situation though. I'm starting to socialise a little more, which is a big step for me. And I'm doing more crafts and keeping myself busy. I'd love to learn how to draw up apparel patterns, so maybe that'll be my next personal mission. . . That's about it, folks! If you've read this far, blessed be, I love you. ❤️
Day 5• I deaccessed so I could shower and wash my hair for work tonight. The dressing left a yucky rash, but that has faded! I felt bad for my coworker because I’m still sore, but she was such a trooper and really helped me out! I’m feeling a lot better today. Sore from work, but nothing unbearable!! Hope you all had a wonderful weekend!❤️ •••••••••••••••••••••••••••••••••••••••••••••••••••• #onedayatatime #dysautonomiaawareness #potssyndrome #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #mastcell #portacath #portacathsurgery #butyoudontlooksick #invisibleillness #chronicillness #staypositive #sharethelove #surgery #salineinfusion #hydration #restday #invisibleillnessawareness #chronicillnessessuck #suckitupbuttercup #smilethroughthepain #smilethroughthetrials
Cheesy face for a cheesy good time! I'm already paying for it, though 😔 I'll get hooked up to my IV and stay in bed awhile, focusing on the great time that got me there instead of the illness keeping me there. #ehlersdanlossyndrome #dysautonomia #spoonielife #edswarrior #eds #sepsissurvivor
First EVER attempt at not only gingerbread but a gingerbread house. I don't think I could have fitted anything else on it. We did have candy floss billowing out of the chimney, but it didn't last long. The receipients were happy, grandad was caught feeling his way around it (he's blind) to find and pinch chocolate buttons from the roof. It was great fun to make. With thanks to @mr_incredible75 who aided me in the construction, he also helped finish off the leftover icing and matchmakers! This was a recipe with templates from @bbcgoodfood online, good old Mary Berry providing instruction & templates, although next xmas I feel like making something bigger and better, maybe the Big Ben or Buckingham Palace! The instructions say put tealights inside & light them, but can only be on for a short time due to melting decs & burning the roof. So a little set of copper wire fairy lights were used instead. I think it works pretty well! My favourite parts are the "stained glass windows" made from crushed boiled sweets melted in the oven! Ingredients from @lidluk @sainsburys @cadburyuk @nestle #gingerbread #gingerbreadhouse #fairylights #christmas #christmasbaking #igetbywithalittlehelpfrommyman #assistedbaking #homebaking #homemade #homemadeisbetter #cooking #kitchen #lightupgingerbreadhouse #christmaslights #igetbywithalittlehelpfrommymum #bendybaker #ehlersdanlossyndrome #maryberry #maryberryrecipe #bbcgoodfood #bbcgoodfoodrecipe #matchmakers #jellytots #smarties #marshmallow #snowman #cadburysbuttons #jazzies #candyfloss #icing
#hemophilia community I’m ready to tear up some speaking engagements next year! Contact your Biovarativ rep to book . My story and message evolves every day and I’m ready to change some more lives 🙌🏼💉🙏🏻💪🏻 #HemoLife
Many of our chronic pain and complex musculoskeletal pain patients also complain of cognitive symptoms. 🧠 Concentration difficulties / slow information processing / confusion and poor memory are most often called brain fog. A common experience for those suffering with pain and fatigue conditions. 👉 We suggest you try these strategies to manage this challenging symptom: 🔹Rest adequately to aid recovery (rest your mind as well as your body) 🔹Hydrate before, during and after bouts of stimulation to improve blood volume and therefore blood flow to the brain 🔹Pacing, pacing, pacing (remember to place your focus on one task at a time) 🔹Understand your triggers to reduce and/or modify your load in the future and then engage in a gradual exposure plan 🔹Nutritious, balanced food intake tailored for your needs 🔹Regular mindful practices can help improve concentration capacity 🔹Research shows that whilst you may be slower to complete a cognitive task, cognitive accuracy is no worse than healthy individuals. So be patient with yourself, give yourself the time to use your mind and know that speed is irrelevant to the outcome you can achieve. 🙏
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