#ehlersdanlossyndrome

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Absolutely exhausted after a trip to Cambridge today for a meeting with university. Was as positive as it could be... will update more in tomorrow’s blog post ✌🏼
I’m not sure if other “eds-ers” consider super rough patches flares or not but that’s what I’m calling the past few days. Although, I’m pretty sure it’s my own fault. I went for a little walk in the woods and was fine for the most part, I had to rest before the walk back. I was pretty fine the rest of the day, but that night I was in soo much pain. My hips, knees, shoulders and elbow were so exhausted, I was super nauseous and could not eat dinner- I don’t know if that’s from mild gastroperisis or from being in pain. I was able to finally fall asleep, but woke up still pretty sore. I took a muscle relaxer and carried on the best I could. The next day I woke up so exhausted, and it was almost noon! I tried to stay awake because I hate feeling “lazy” but around 2pm I had to take a nap. Then I woke up at 6pm... -🦓🦓 #eds #ehlersdanlos #heds #hypermobile #hypermobility #ehlersdanlossyndrome #hypermobileehlersdanlos #spoonie #spoonielife #chronicillness #chronicallyill #chronicpain #edsandco #invisibleillness #invisibledisability #zebrastrong #gastroperisis #pots #posturalorthostatictachycardiasyndrome #masscellactivationdisorder #masscell #mcad #chronicfatiguesyndrome #chronicfatigue #cfs #mecfs
🌿How many of you here have mast cell activation Syndrome?🌿...Also what are your triggers for a reaction? I have had it most of my life and it is bothering me more than ever. I booked a week off for my boyfriend’s birthday this week and have had a mast cell flare up for almost 5 days now. I pretty much had an allergic reaction to the cold that I got last weekend. This will probably make no sense to anyone that doesn’t know about MCAS...😂 I am almost recovered now finally! Hope you are all well!!!! #pots #potsie #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #eds #chronicillness #fighter #reflexsyncope #aquagenicurticaria #waterallergy #lowbloodsugar #tachycardia #potsiestrong #keepfighting #hypoglycemia #hypos #mcas #mastcellactivationsyndrome #neuropathy #chronicpain #nhs #health
Oops. My dislocation is actually a severe sprain. I'll be in this boot for at least the next 3 weeks, until I can get in with my orthopedist. I've been advised to keep this boot on as much as possible and not walk at all. Did you know bones are made of 90% collagen? Bad news when your body overproduces defective collagen. Happy summer! #ehlersdanlossyndrome #footsprain
People are quick to make assumptions, but what is on the surface isn’t always reality. Be kind to everyone, as you never know what they are battling in silence. 💙
Highly filtered and hiding behind Morris because I look like shit😫 at least I’m wearing makeup. I want to be open on this page. I want to show everyone all the ugly parts of chronic illness. But at the same time, I struggle with the ugly parts myself. I’m looking and feeling like shit because of this house move. I’m so burnt out, and just constantly overdoing it. Cleaning, packing, decorating, unpacking.... urgh. But, in good news, I finished my placement hours today! And my exit tutorial is tomorrow. Super excited for college to be completely over with, but I’m also dreading the job hunt. I’ve already sent out a load of CV’s, but the issue is all the restrictions I have. Its even worse because health and social care work is all so physical... I’m feeling up and down at the moment. #ehlersdanlossyndrome #ehlersdanlossyndromeawareness #ehlersdanlossyndromewontwin #eds #chronicillness #chronicpainawareness #chronicpain #chronicfatigue #invisibleillness #invisabledisability #invisibleillnessawareness
Hello! And welcome to Mullet Brain Crafts! Why such a weird name? It all started when I was explaining what Chiari Malformation was (which I happen to have) to a friend. He then asked-" so it's like a dangerous brain mullet, right?" And the name was born! Here at Mullet Brain Crafts, we'd like to both share the love of creating and art, as well as raise awareness for Ehlers Danlos Syndrome, Chiari, and their surrounding illnesses. The plan is to make cool things, share the joy of the arts, and try and look at the brighter side of disability and chronic illness. Also, all shop sales proceeds will be going towards my ongoing (and very expensive) medical care and medical debt. New items will be added as often as possible- so come take a peek! #etsy #etsyshop #handmade #crafts #embroidery #chiarimalformation #ehlersdanlossyndrome #craniocervicalinstability #brainsurgery #spinesurgery #teambrainmullet #mulletbraincrafts
LOOK AT THIS!!! I’m so excited, so this stuff right here is like powdered gold (I’m glad it doesn’t cost that much). Anyway I contribute this stuff and just pushing myself to being able to walk my dog, yep walk on two feet. 4 months ago I was wheeling my dog. I can’t say that it will fix everyone but I have no other explanation as to how I haven’t been to the ER for iv infusions in 2 months. It’s crazy, my arms are thankful and I just want to hug these bags. Thank you @liquidiv for giving me a new boost 😁. #potsie #liquidiv #amazing #dysautonomia #eds #ehlersdanlossyndrome #zebrastrong #dog #chronicillness #hydrate #icandothis #zebrastrong #blogger #awareness
i have a confession... i’m afraid. it’s been two years since i graduated from physical therapy school. two years spent trying to put my life back together so i can finally (hopefully) start working. i’m afraid of starting a new job and having my symptoms make it unbearable. i’m afraid they’ll make me resent the profession i spent six years preparing for just because of how hard it’ll be on my body. but most of all, i’m afraid that i’ll succeed. to finally feel like i’m really getting my life back, just to have it fall apart again. i’m afraid of being a failure. i survived it when my life imploded the first time, but i don’t know if i can go through that again. the demoralizing, earth shattering devastation when everything you once knew is now gone. i haven’t been ready to face this, but what i’ve realized is that i don’t think i’ll ever be ready. i’m going to be terrified. i’m going to want to back out. i’m going to want to succumb to the fear, but in order to live the meaningful life i so desperately want, one day i’m going to have to do it anyway. so this is my promise to you that even though i’m afraid, i’m going to fight for more. i won’t be brave or inspirational, but some day i’m going to plunge headfirst into that abyss and hope for the best.
"I thought I had rested enough and been careful but then this week I have been asking myself…Am I in a flare?" My latest blog post is up hope you enjoy it http://www.bloomingmindfulness.co.uk/am-i-in-a-flare/ Link is also in my bio #blogger #bloggingfrombed #blog #bloggersofinstagram #bloggerstribe #chronicpain #chronicillness #flare #fibromyalgia #ehlersdanlossyndrome #ankylosingspondylitis #chronicfatiguesyndrome
Some stills from recording. Working hard behind the scenes to get as much videos up before the launch on Friday. Thanks so much for clicking on interested/ attend on the Facebook event as it all helps me promote the YouTube channel! www.facebook.com/events/596871817502378 Please invite friends to the event too 🎬 -Kitty x • • • #youtube #vlog #eds4ire #ehlersdanlosawareness #pots #dysautonomia #eds #ehlersdanlossyndrome #irishvlogger #zebrastrong #edschallenge
let’s talk about pushing yourself. this is something i’ve been dealing with since i got sick. doing way too much and paying for it for days on end. but you know what? this isn’t always a bad thing. pushing yourself can do so much good. i know everyone says “listen to your body” “rest when you need to” and don’t get me wrong i agree with those statements. however, where does it reach the point of letting your illnesses control you? yes we are all sick. yes we all need more rest than most people. however, just as @keyera_jennings said, we cannot let our illnesses stop us. we should still go out once in a while and do crazy things. we should still push ourselves to hang out with friends and family. we should still learn to appreciate the little things in life. and yes i understand that our illnesses may ruin plans, but they will not ruin our lives. our lives are for us to control. not chronic illness. hell look at me! i did my first ever run! and still cleaned my room the same day. i do not regret it a bit. pushing yourself will help you in the end. so live a little. #ehlersdanlossyndrome #gastroparesis #intestinaldysmotility #mals #posturalorthostatictachycardiasyndrome
Self care moment with my bunny 🐰 It doesn’t get any cuter than her trying to lick my face mask off my face 🧖🏽‍♀️ . . #spoonie #selfcare #facemask #hypermobility #ehlersdanlossyndrome #ehlersdanlos #chronicillness #bunny #zebra #hypermobilityspectrumdisorder #hypermobilityspectrumdisorders #sed #syndromeehlersdanlos #zebre #pet
One of my favorite #SantaClaritaDiet quotes. Probably because it flashes through my mind every time someone who isn't a doctor, or living with a chronic medical condition, tells me what I "need to try". So, a lot. 😂 #ChronicMedicalCondition #Infertility #IIH #PseudoTumorCerebri #CSFLeak #EhlersDanlosSyndrome #Fibromyalgia #Migraines #Neuropathy #GoogleIsNotADoctor
I did a thing this afternoon! I used up a lot of spoons doing it, and now I feel sick and my joints ache BUT I have wanted to put a goddamn border along the path since I moved in 3.5 years ago. So now I did. #gardening #homeimprovement #diy #chronicillness #spoonie #heds #ehlersdanlossyndrome #ehlersdanlos
Laying with migraine and pain alot today, so tired of this! Got refill of medication today so I hope I'm feeling better soon, I could really need it because tomorrow I'm going to be picked apart, into pieces, and put back together again at the painclinic. I do not look forward to it but I got no choice either 🙄 Looking forward to Saturday tho, movienight with great company 👌🏻😎 #keepfighting
Laying in bed waiting till it’s time to get ready for work. Laying down is basically the position that causes the least amount of pain. I’m still in pain when I lay down but it’s not as bad compared to when I sit up or stand up. . . . . The reason I’m in so much pain is because I pushed myself way too far this weekend. I went to pride on Saturday, worked a 8 1/2 hour shift on Sunday and went to a water park on Monday. My legs, mostly my hips, are killing me. I’m glad I went to pride and I’m glad I got to spend time with family but I am paying for it now. I need to buy a new heating pad because the one I’ve been using isn’t mine. . . . . #spoonie #outofspoons #spoonies #chronicillness #chronicpain #chronicpainawareness #chronicpainsucks #chronicpainwarrior #chronicillnessawareness #chronicillnesswarrior #eds #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #buddytape #heartfluctuation #undiagnosed #undiagnosedillness
And a perfect example of me kicking my own ass! This morning I did not want to move! I finally moved and the PAIN 🤬 the amount of joints to pop back in🦓 I sound like Rice Krispies and bubble wrap! I took my medicine, pain cream, braces, heating pad, and back down! So I am now (trying) getting up ( still in hell) but I am moving🙏🏻I have to get to the shower! I have to get outside! I have to get my legs working or I will lay here and feel them vibrate in PAIN all day! I had to find something that could come from all of this pain, that’s to be open about how I kick my own ass (brain) into fighting the through and distracting from the pain! I am staring at the shower and I am determined to get there! All of the 🦓 sharing our journeys inspire each other and also bring some sort of confirmation or validation to “can it really suck this bad, or I am I just crazy?”. No your not crazy and yes, it just sucks that bad! But it’s not impossible to fight through hard as shit but 🦓💪🏻#ehlersdanlossyndrome #chronicpain #zebrastrong #painmanagement #musicismedicine #cannabisismedicine #hypermobileehlersdanlossyndrome #negu #iwillgettothesun
This makes me look incredibly smart, right? This is the newest exercise I have received from my physiotherapist. I put the training band around my head and lean my head to the right against the resistance of the training band. Then I sit in this position for 2-10 min. This is to try to reduce the high muscle tone of the muscle on the left side (where the arrows point). If I do something with my right arm or try to activate muscles anywhere, my shoulder will rise toward my left ear and my head will tilt to the left. Hopefully, these exercises will reduce that reaction and my shoulder will stay down. #smart #exercise #physiotheraphy #rehab #training #resistance #reduce #highmuscletone #tetraplegic #quadriplegic #paralysis #ehlersdanlossyndrome #fnd #disability #laughing #hardwork #happy
I’m so excited! It’s coming up quickly! I can’t believe how much there still is to do! 😂☺️😍 ❤️ ❤️ ❤️ #eds #life #chronicpainwarrior #pain #ehlersdanlossyndrome #fibromyalgia #mcas #reactivehypoglycaemia #zebra #livinglifetothefullest #cfs #wheelchairuser #wedding #excited #soclose #marriage #couple #ido
Watch full video on our Facebook page and don't forget to subscribe to our all new membership site for people with Chronic Dis-ease. Link in bio! Sometimes life just happens to us, either someone we know hurts us, or something else that is completely our of our control affects our spirit on an everyday life and it can be hard to re-frame and keep moving forward. In today´s video I am sharing something very personal with the hope that you guys may find a way to re-frame your state of mind, or  at least get the conversation going about what is currently on your mind. #ehlersdanlossyndrome #pots #chronicpain #chronicillness #mentalhealth #chronicfatigue #mcad #cancer #raynauds
Pretty much what I’m currently doing. I’ve taken all the negative and smushing it all into a big ol’ positive. I’m making all the changes that I should’ve sorted ages ago and I know exactly where I’m heading, which is exciting and also a huge relief. It’s easy to lose yourself when you’re chronic illness pulls the rug from underneath your feet. You lose who you thought you were and you need to figure things out before you rebuild your life. That’s where I am right now, finally rebuilding and it feels good. . . . . #natureheals #authenticliving #chronicillness #invisibleillness #hEDS #ehlersdanlossyndrome #spoonie #spoonielife #mecfs #spoonielife #zebra #zebrawarrior #dysautonomia #inspiration #atonewithnature #positivevibes #positivity #newbeginnings #freshstart #honesty #levellingup
Hey world.👋 Here I am with more #zebra stripes. Ain’t no shame in my soft collar game. 🤷‍♀️ If you’ve been keeping up on my posts, you’ll know I’ve been struggling with a lot of new neuropathic symptoms, including tremors, pain, and numbness in my limbs. My last CT scan of my cervical spine came back with some severe joint laxity in my neck and shoulders, so my neurologist suspects there could be either Craniocervical Instability, pinched nerves in my neck, or a combination of the two causing those new symptoms. Until I can get a ridiculous series of follow-up studies, including a three-hour MRI with contrast, I’m using this soft-collar brace to help alleviate symptoms. I’m already seeing small differences in my POTS symptoms, brain fog, and tremors. Plus, there’s the added benefit of answering “what happened!?” 😱 from 30 different randos every time I go into public. @disabledinjustice you feel? #zebrastrong #showyourstripes #rarediseaseawareness #ehlersdanlossyndrome #fragilebutunbreakable #chronicillnessadvocate #neurologicaldisorder #pots #mcas #spoonielife #disabilityawareness #disabilityrights
Effing migraine. I usually feel better by now. I’m 3 relpax in and 3 zofran, a quarter of a Clonazapam , ice, muscle stim... not budging at all. I haven’t had a resistor like this in a long time. I believe it’s detox related. Lymphatic massage yesterday and detox protocols after surgery....#whenshitsnotworking . . #migraine #migrainerelief #lymedisease #ehlersdanlossyndrome #ehlersdanlosawareness #lymeandehlersdanlossyndrome #spoonielife
What a difference a day makes...What difference do you want to make today? Today I’m simply appreciating what I have differently 🌱 #plantmedicine #mmjpatient #crps #ehlersdanlossyndrome #selfcare #livinglifeonlifesterms
Find something that makes your heart beat a little faster when you think about it, do something that makes you dream like your a child again , live like theres no time to waste 💗 #limelifepaloozaeurope #goalsetting #limelifeuk_ire #dreams #quotestoliveby #promakeup #muotd #ootd #london #ehlersdanlossyndrome #chronicillness
👀💞 #perspective #alwayssomethingtobegratefulfor from our sister @msunmasked 🌤 . "To savour food and wine, without a reduced sense of taste or inability to swallow properly . To use cutlery or chopsticks, without the interference of spasticity or inhibited fine motor skills . To feel the caress of the gentle breeze on a summer’s eve, without tingling skin or overheating . To sit at a table for several hours, without the fatigue, pain or concrete limbs becoming overwhelming . To engage in conversation, without brain fog, word-finding difficulties or disconnection from the words escaping your mouth . To walk in and out of a venue, without dizziness, loss of balance, or weakness . To visit the amenities, without urgency and frequency . To embrace leaving the house, without the anxiety of repercussion . To smile, without it being to fake ‘OK’ . To say ‘I’m going well’, and really mean it . To make plans to go out, and not have to cancel . To feel beautiful, loved and content, without the shroud of limitation that illness can bring . To be so engaged in your experience, that even your ever-present symptoms take a backseat . And to spend time with those you love, with pure immersion in their lives . It’s easy to dismiss things that ‘just are’, until they ‘just aren’t’ anymore. Being chronically ill has brought me a much greater appreciation for the (not so) small things . Every now and then the stars align, and some, if not many of the above desires come to fruition . But even if it’s only a few, being mindful of when they do means the experience tastes that little bit sweeter . And for that enhancement, I am always grateful ✨💕" ☁️☁️☁️☁️🌈☁️☁️☁️☁️🌤
This mood board was a little different as it was for my editorial for @conkermagazine about Ehlers-Danlos Syndrome and needed a little more explanation that just general images. I split in into 3 ideas: makeup, the hands concept and the apple motif. I love how this turned out and it really helped tell the story of a chronic illness. Swipe to see the results and I’ve tagged the creatives that made the images for the mood board. #shotbyrega #regaretouch #moodboard #inspiration #londonphotographer #beautyphotographer #beautyeditorial #creativebeauty #ehlersdanlossyndrome #ehlersdanlosawareness #edsawareness #chronicillness #apple #doctor #medical #closeups #macro
We tried out the pride skittles yesterday, I think it's pretty cool that they have taken the rainbow away from the skittles to celebrate not just changed the packaging. Happy Pride Month, I'm sorry that I haven't said that yet, it isn't that I forgot just that I have so much on my mind recently. - I started writing my story for the competition last night and my English tutor was really impressed with it. They might be starting a craft club with pupils and he saw my loom weaver and asked if I'd like to join in, I said yes as that will mean that I will be able to socialise with people my own age he also said that there is a lovely girl who is quite talkative and in experience quiet and talkative people get on really well that made me feel a lot happier about it because I'm actually quite quiet and shy in real life. - I had another lovely surprise today as my awesome Mum got me the Hollyoaks seeing red book!! I’ve been loving using this weaving loom my lovely sister Rhianna gave me for my birthday. I have to be helped with turning it and starting off but it’s been amazing and it feels really nice. It’s also really therapeutic! - Me and Mum went to the pharmacy because we had run out of ibuprofen gel and it's actually giving me some relief and even though I'm still in agony with it, the pain is so bad without it that I nearly cried several times just because of pain and I'm rarely like that. - Alora has a cold but she was still her happy self and that made me happy. • • • • • • #Pride #WritingCompetition #Crafts #LoomKnitting #Hollyoaks #Positivity #EDS #EhlersDanlosSyndrome #ChiariMalformation #ArnoldChairiMalformation #Syringomyelia #Syrinx #setd1asyndrome #tetheredcordsyndrome #younganddisabled #ChronicPainsyndrome #chronicpain #chronicfatigue #ChronicallyIll #visualimpairment #visuallyimpaired #colourblindness #hyperacusis #tinnitus #PTSD #MentalHealthIssues #InvisbleIllness #TZWRS 🦓🌈
I love his little gap-tooth smile. We were doing tandem work with @sulu.the.service.dog yesterday and both boys were fantastic. Photo taken on our walk to the dog park. ————————————————————— Partners 🐾 with @antares_the_service_star @poodleaide DM if you’d like to be partners! Chekov is an owner assisted service dog through @starfleetservicedogs ———————————————————— #rescuesofinstagram #servicedog #servicedogsofinstagram #shepherd #shepherdmix #husky #huskymix #dog #dogsofinstagram #dogstagram #shepherdsofinstagram #huskiesofinstagram #ehlersdanlossyndrome #hypermobility #fibromyalgia #chronicpain #invisibledisability #invisibleillness #chekovtheservicedog
This is how I dress up, always my compressive clothes and my braces, even with 38 C It’s difficult to support them with the heat. But what it annoys me the most, is these f*cking critics who insult me “oh a wore !” For exemple. I’m not dressed up like this to excite you, I dress up like this cause I don’t have the choice, just yesterday I dislocate 3 times my right knee, my ankle, my hip, my elbow.... and yes I also wear a shirt, cause I don’t want to passing out 😏 “Ignore them, ignore them” I know I know... but it’s really, really, reaallllyyyy complicated .... #invisible #invisibledisability #disability #ehlersdanlossyndrome #eds #sed #syndromeehlersdanlos #sick #pain #heat #imnotaslut #jugement
Abnormal is something that has been happening as my hEDS seems to take over my crumbling body. While those abnormal readings from tests can mean super scary things, I’m learning that my body just doesn’t function normal and NEVER has. It’s just the little problems I had growing up and thought were normal, are NOT. Turns out I’ve been coping with Ehlers-Danlos for a long time, it’s just my abnormal body can’t cope on its own any longer. I just need to remind myself that I’m wonderfully weird when I hear abnormal now.🤷🏻‍♀️😜 #ehlersdanlos #eds #zebrastrong #ehlersdanlossyndrome #ehlersdanlosawareness #hypermobility #hypermobileproblems #chronicillness #chronicillnessmom #youngfrankenstein
I absolutely love that my family is so busy and we get to travel and do so many amazing things! However, it absolutely drains me and reeks havoc on my body. Today is definitely a rest day because I’m completely out of spoons! #spoonie #chronicillness #iih #ehlersdanlossyndrome #eds #chiari #invisibleillness #butyoudontlooksick #chronicpain #strugglingmom
My 5 day nightmare is almost over!! Its a long story but had to do a round trip to Houston after getting stranded by Spirit Airlines. 29 hour drive and one flight home. Ill be in bed for awhile... i hurt so much.... . . . . #selfie #me #tripfromhell #roadtrip #goinghome #exhausted #greentea #starbucks #houston #texas #eds #ehlersdanlossyndrome #ehlersdanlos #gastroparesis #pots #spoonie #spoonielife #chronicpain #chronicillness #zebrastrong #overit #arewethereyet #travel #airport #airtravel
Dermotographia markings kick-started a Mast Cell reaction. I couldn’t stop scratching, and the blood all came up to the surface. For some reason my dermotographia reactions have been getting much worse lately. . . #ehlersdanlossyndrome #ehlersdanlos #eds #dermatographia #mcas #mastcell #mastcellactivationdisorder #itching #scratching #reaction #chronicillness #rash #chronicallyraven
Had this discussion with another chronic pain friend, why tell me just that? ABNORMAL.....it’s kinda a scary word, especially when you’re talking about how my organs are functioning to help me live. 😳😧#ehlersdanlossyndrome #hypermobility #eds #zebrastrong #hypermobileproblems #chronicillness #chronicillnessmom #ehlersdanlosawareness #arresteddevelopment
Say WHAT? We will send a copy of The Dysautonomia Project book to your licensed health care provider for FREE, anywhere in the US! Visit TheDysautonomiaProject.org/book-promo/ and fill out the form by July 15th. #TheDysautonomiaProject #WeAreDysautonomiaStrong #Dysautonomia #Fatigue #Education #Pain #EDS #MCAD #EhlersDanlosSyndrome #MCAS #ChronicIllness #Emotional #POTS #Spoonie #Fibromyalgia #DysautonomiaAwareness #gastroparesis #Inspiration #InvisibleIllness #AutoimmuneDisease #Turn6into15 #Anxiety #Depression #KnowledgeIsPower Reposted from @thedysautonomiaproject
Happy Wednesday! Halfway through the week and I’m so behind 🤣but a book and coffee aren’t a half bad way of starting the day. Next week’s blog post should be a short story, if it all works out! On a personal author note: I’m a little bit broken. If you’re squeamish skip the next sentence. My femur dislocated and popped back in, so I’m trying to take it easy. Plus, I’m helping @triley619 and @thex1stxnoelle with the newest addition to their household: @sulu.the.service.dog ! So updates on insta may slow down a little. Thanks for your patience! ——————————————————————— #bookstagram #book #coffee #harrypotter #deatheater #deatheatermug #voicesfromchernobyl #swordandboardllc #authorupdates #ehlersdanlossyndrome #hypermobility #reading #readeveryday #writeeveryday #writing #writingcommunity #readersofinstagram #bibliophile #writersofinstagram #artsy
5 Ways I Feel Pretty With a Chronic Illness. 💄💆💇‍♀️ Check out my latest post from Spoonie Lives! 🥄🥄🥄 https://spoonielives.blogspot.com/2019/06/5-ways-i-feel-pretty-with-chronic.html?m=1 #spoonie #chronicillness #ehlersdanlossyndrome #eds #hypermobile #heds #fatigue #blogger #blog #pretty #selfcare
Postural Orthostatic Tachycardia Syndrome. - - Here’s a real time poor mans test. This isn’t too bad of a jump 58-110, only 52 bpm higher just because I stood up. Yeah that’s close to me doubling but like I said it’s not too bad for me. Frequently I hit 120,150 and 180. I have less frequent jumps over 200 but it happens a few times a month at least. My body likes to run low on everything when I’m sitting/resting; temperature, blood pressure and heart rate, but my narrow pulse widens when resting (usually). All of these jump around like crazy when I’m standing. Unfortunately every single day even every single minute is different and idk what my nervous system is going to tell my heart to do that day/minute. I can have high blood pressure one minute then drop stupid low the next. It’s really quite the roller coaster ride. I started the day off 84/60 and 105 but as you see it’s now different. I’m struggling and that’s ok. Not every day can be decent. - - What does POTS do to you? Any of you nashville people wanna bring me some organic Gatorade from Publix??? 🤷🏻‍♀️That yellow and strawberry are 🔥🔥😂🤣😂🤣 - - #pots #posturalorthostatictachycardiasyndrome #dysautonomia #narrowpulsepressure #lowbloodpressure #tachycardia #highbloodpressure #miserable #verticallychallenged #eds #heds #ehlersdanlossyndrome #invisibleillness #chronicillness #syncope #fainting #autonomicdysfunction #mastcell #organicgatorade #butyoudontlooksick #chronicallyfabulous #health #disabled #livingmybestlife #help #poormanstilttabletest #applewatch #dropitlikeitspots #advocate #blogger
Thank you so much for following!! You give me the motivation to share my story and create more awareness for invisible illnesses. Stay bendy not broken x #50followers #invisibleillnessawareness #chronicillnessawareness #invisibleillness #chronicillness #ehlersdanlossyndromeawareness #ehlersdanlossyndrome #ehlersdanlos #eds #chronicallyill #chronicpainwarrior #chronicpainawareness #chronicfatigue
“The path to paradise begins in hell.” - Dante Alighieri This is by far the smallest, simplest but most meaningful tattoo I have. I got it not only to commemorate this holiday (hence the Dante reference) but also how far I have come. I have been through hell and back multiple times during my life. My childhood was not the happiest, I was bullied so much I still have PTSD and anxiety from it, I had severe depression for a long time and when I finally somewhat got through that, Ehlers-Danlos struck full force. This past year has been so difficult, I had to deal with so much, my life was turned upside down but I still made it through. This little bit of ink will remind me to stay strong and keep going. I made it out of my personal hell before and I can do it again. #tattoo #ehlersdanlossyndrome #eds #zebra #zebrastrong #scripttattoo #zebrastrong #inferno #mentalhealthawareness #dnatattoo
Today I am happy, I bought peaches yesterday from @georgiapeachtruck Today I worked on arranging our little plant revival area and I set up some herbs to dry... idk when I became a witch but now that I’m living with my friends and I’m not in school, I’m reading a lot more and cooking and growing plants! #georgiapeaches #witchy #eds #ehlersdanlossyndrome #disability #disabledandcute #peaches #cripplepunk #queer #disabledlife #disabledandqueer #disabledandproud
When you get an ambulatory EEG, you can’t walk across carpeted floors in socks (static electricity). But, when your feet are always cold and your Grandmother, and Queen of your life, is Japanese she’s got you covered. I love you Obaasan! 💜💜💜 . . . . . . #spoonie #spoonielife #spoonies #spooniesupport #spooniestrong #chronicillness #chronicpain #chronicfatiguesyndrome #autoimmunedisease #autoimmunewarrior #tmjdisorder #ankylosingspondylitis #ankylosingspondylitiswarrior #fibromyalgia #ehlersdanlossyndrome #painrecognizespain #TMJ #spondy #mentalhealth #mentalhealthawareness #family #familylife #mom #spooniemom #spooniewife #strokesurvivor #seizures #cane #wheelchair #invisibleillness
COMPARISON & CHRONIC ILLNESS⁠⠀ ⁠⠀ 📸my collab with @thisthingtheycallrecovery ⁠⠀ ⁠⠀ We've all seen those illustrations and quotes reposted time and time again on our Instagram feeds: 'Don't compare your real life to someone else's highlight reel.' ⁠⠀ And of course, this is something that is important to remember when you spend any amount of time online. Those automatic feelings of comparison can so easily creep in. ⁠⠀ ⁠⠀ The chronic illness community is not immune to this, and comparison pops up in a number of ways that I think are important to be aware of, especially because they can manifest in really damaging ways: both in terms of how we treat other people, and how we feel about ourselves. ⁠⠀ ⁠⠀ Firstly, it's so important to remember that just because you have the same condition as someone else, it doesn't mean it will manifest in the same way. My best friend has the same conditions as me and we're basically polar opposites in how and where our symptoms impact us. Just because your body may or may not be able to do certain things as others, it's really important to not use this as a baseline for how you see your own illness.⁠⠀ ⁠⠀ One thing I will say in relation to this, however, is that there are is a reason why I have written about privilege and chronic illness, especially when it comes to management. Some people (and I include myself in this) are privileged to have access to levels of care and support that many do not, and that can't exist in a vacuum. ⁠⠀ ⁠⠀ We also need to get over this idea that chronic illness is somehow a competition, and also remember that the way we live, cope, and communicate our conditions are unique to each of us. ⁠⠀ ⁠⠀ For example, many people make the assumption that because I 'cope' with my conditions in a certain way, they think I have it way more figured out than them. And that's not necessarily the case. It's my personality and the fact that this has been over 20 years of my life. If you've been ill for 2, of course our experiences will be different! I've had a long time to learn and process, and I still struggle everyday. ⁠⠀ ⁠⠀ So yeah just something to think about that once again comes down to ‘we’re all different’😂
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