#ehlersdanlossyndrome

[bitsofloststardust]

That first sip of your favorite flavor of liquid iv that makes you believe life is worth living again.

#strawberry is the best flavor #liquid #liquid iv #strawberry #chronic illness #ehlersdanlossyndrome #pots syndrome #potsie

[lovethisfat]

It's punk as fuck to use your mobility aids when you need to 💋💜 . . . #cripplepunk #disabled #pots #potsie #eds #ehlersdanlossyndrome #queer #trans #nonbinary https://www.instagram.com/p/Cg6yU3yON5g/?igshid=NGJjMDIxMWI=

#cripplepunk #disabled #pots #potsie #eds #ehlersdanlossyndrome #queer #trans #nonbinary

[thesporkwitch]

Made for Spoonies, by a Spoonie with hypersensitive skin! Retinol? ✅ Hydration? ✅ Doesn't clog pores ✅ Good for inflammation ✅ Dark Circle Reducer ✅ Vitamin packed ✅ Good for acne ✅ All natural ✅ Vegan ✅ Wrinkle repair? (NOT THAT THERE IS ANYTHING WRONG WITH BEAUTIFUL WRINKLES!! But if you are wanting something, for your own face, for that, that's ok too!) ✅ #spoonie #sensitiveskin #zebrastrong #skincare #allnatural #vegan #ehlersdanlossyndrome https://www.instagram.com/p/CpJKaWLvFYS/?igshid=NGJjMDIxMWI=

#spoonie #sensitiveskin #zebrastrong #skincare #allnatural #vegan #ehlersdanlossyndrome

[thelifeoflorna]

~6/2/2023~ It was a different sort of day, though not necessarily good different. I had council of governors meeting for work for most of the day, so H couldn’t come in. I’m finding the meeting more accessible than I was, and am able to contribute, though find it a very large social effort for largely dismissive and underwhelming responses :/ Within the meetings we were voting for a new Lead Governor - and I’ve now been officially named as Deputy Lead Governor - not sure how I feel about that - apparently it won’t amount to anymore work, but I’ve already got the sense that it will… Later in the afternoon I headed to my appointment with AKA - it was a pretty good, but fairly standard appointment - she has now got a date for a consultation with the Complex Trauma Service for roughly a couple of week’s time - I updated her on a few other things. Popped into M&S on the way home for a few essentials to tide me over til food shopping tomorrow. Tried and failed to find a PA to cover a shift tomorrow as L is unwell. Read about more titanic survivors when I got home to try and settle my thoughts. Then was off to rock choir. Actually wound down quite well afterwards and got to bed at a decent time. 🦄 #instadaily #instablog #update #mentalhealth #dissociativeidentitydisorder #cptsd #actuallyautistic #traumarecovery #edrecovery #anxiety #chronicillness #disability #pots #potsie #dysautonomia #positivevibes #recovery #jellycats #actuallyautistic #ehlersdanlossyndrome #turtle #bashfulturtle #jellycatobsessed #turtlelove #jellycatsofinstagram #softtoys #nevertooold #jellycatcollection https://www.instagram.com/p/CoW95EGqxuX2wWFMyRxN96tuZAW6eYVPz-_sUQ0/?igshid=NGJjMDIxMWI=

#instadaily #instablog #update #mentalhealth #dissociativeidentitydisorder #cptsd #actuallyautistic #traumarecovery #edrecovery #anxiety #chronicillness #disability #pots #potsie #dysautonomia #positivevibes #recovery #jellycats #ehlersdanlossyndrome #turtle #bashfulturtle #jellycatobsessed #turtlelove #jellycatsofinstagram #softtoys #nevertooold #jellycatcollection

[harmoniousworld]

Hello, all! This is my very first blog post to Tumblr, after being a long-time WordPress user! I have yet to pick a theme for my blog, but I’m going to start with health/illness/disability. I don’t want those topics to “define” me, but I want to share the struggles. I may eventually shift the theme of my blog, or maybe take on a few themes in this blog. I just wanted to share my story... my journey through life in general. I don’t like platitudes or false inspiration, so you won’t be receiving many inspirational sayings from me. I’m optimistic, for sure, but when it comes to this illness and disability, I’ve learned to be more realistic.

I have a blog dedicated to my illness on WordPress, but I want to start fresh with a new perspective. What’s weird is that writing about my illness actually makes me frustrated. That’s why I mentioned that I may end up shifting focus on this blog. :)

I am actually typing from a wireless keyboard without actually looking at the screen. In fact, my screen is turned fully off. I will have to have my husband edit this for me when I’m done. He’s already busy enough, but if it edit this myself, it’ll defeat the purpose of me using the wireless keyboard: to avoid having to look at screens. I’ll be getting into WHY I can’t / mustn’t look at screens in my future posts!

For now, I just wanted to give more of an introduction.

I’m almost 40. I am suffering. I don’t have much in life. This blog may be the only thing that’ll keep me afloat.

#disability #disabled #disabilities #chronic illness #illness #invisibleillness #coping #wheelchair #EhlersDanlosSyndrome #EDS #EhlersDanlos #HypermobilityEDS #Hypermobile Ehlers Danlos #Over40 #40 #40s #40’s #forties #over40club #my journey #life with chronic illness #suffering #agony #healing #sharing #my story

[diagnosed-weird]

May 2nd, my type of EDS. I have hypermobile Ehlers-Danlos Syndrome, also known as hEDS. I was diagnosed in 2020 after 13 years from the onset of my first noticable symptoms. hEDS is the only subtype without known genetic markers. There is no cure.

#myedschallenge #ehlersdanlossyndrome #ehlers danlos zebra #ehlers danlos awareness #ehlers danlos problems #ehlers danlos syndrome #edsawarenessmonth #hypermobile eds #eds things #autistic adult #its the neurodivergency #snap crackle pop #actually hypermobile #just add milk to hear the song of my people

[caleighmiller]

I have never been one to post bikini pics because I my body has been weak and messed up for so many years and I just never felt comfortable. Also, I just never have a need to wear one! But today I decided just to put one on and say how proud of myself I am for how far I’ve come. I’m finally the healthiest I have ever been! Working out every day, I’m able to eat a much wider variety of healthy foods now. I don’t care about the scars on my belly or my legs and I’m learning to accept the loose skin all over my body from my EDS. I am strong and happy!! 👏🏻🥰💕 • • • #wednesday #happywednesday #selfie #mirrorselfie #smile #bikini #bikinigirl #bikinilife #bikinibody #thisisme #scars #healing #eds #ehlersdanlossyndrome #ehlersdanlos #proud #strong #recovery #fitness #healthy #everybodyisabikinibody #loveyourself #beautiful #pretty #happy #grateful #chronicillness #inlove #love https://www.instagram.com/p/CgzyaSFO_vQ/?igshid=NGJjMDIxMWI=

#wednesday #happywednesday #selfie #mirrorselfie #smile #bikini #bikinigirl #bikinilife #bikinibody #thisisme #scars #healing #eds #ehlersdanlossyndrome #ehlersdanlos #proud #strong #recovery #fitness #healthy #everybodyisabikinibody #loveyourself #beautiful #pretty #happy #grateful #chronicillness #inlove #love

[aspoonfullofsalt]

Please enlighten me #EDS #EhlersDanlos #EhlersDanlosSyndrome #hEDS #HypermobileEDS #HypermobileEhlersDanlosSyndrome #Hypermobility #Hypermobile #ZebraStrong #EDSZebra https://www.instagram.com/p/Crmgpn5ravN/?igshid=NGJjMDIxMWI=

#eds #ehlersdanlos #ehlersdanlossyndrome #heds #hypermobileeds #hypermobileehlersdanlossyndrome #hypermobility #hypermobile #zebrastrong #edszebra

[taintedcraft-ltd]

*Ignore the socks and PJ’s* - But, as someone who uses crutches regularly, I have a few different ones - one being an open cuff design. Unlike the typical NHS crutches, you have to keep hold of these, where as with an NHS design crutch and others similar you can let go of the handle and let the crutch dangle from your arm using the cuff - this is great if you need that extra hand free to get something out of your bag for instance. —————————————— Anyway - back to the other crutch - the one with an open cuff, this design is great if you’ve got a big puffy jacket on but as mentioned, you can’t let go of it without propping it up somewhere first. So I decided to fix my problem in a funky and stylish way and I’ve created these straps. —————————————— They have an elasticated hoop that goes on to your crutch (or walking stick) and attached is a plastic link wristlet you slip over your hand before you grab the handle of your crutch or walking stick - I’ve also added some stylish charms, a bell to help being noticed easier and a spare keyring clip that you could attach keys or and ID to, perhaps a works pass or bus pass, whatever you like really! I’ve only made 5 so far in this style - there’s 5 colours to choose from. I will be making 5 more but in a different style perhaps using macrame for those who would prefer fabric to plastic. —————————————————— These will be up in the shop very soon priced at £9.50 - I also plan on doing a deal with a 2 pack at £18 on a made to order. As always there’s free personalisation on all my handmade keyrings/straps/chains/charms so if you’d like to add your name too for free I can pop that on in beaded letters (various colours to choose from). —————————————— #taintedcraft #disabilityaid #disabilityaidscanbepretty #crutcheslife #walkingstick #walkingstickswag #walkingsticks #disabilitypride #disabilitysupport #spoonie #spooniewarrior #spoonies #spooniecommunity #fibromyalgie #degenerativespinedisease #smallbusiness #ehlersdanlossyndrome #hypermobility #hypermobilitysyndrome #warrior #chronicillnesswarrior https://www.instagram.com/p/CqaKusGrUcB/?igshid=NGJjMDIxMWI=

#taintedcraft #disabilityaid #disabilityaidscanbepretty #crutcheslife #walkingstick #walkingstickswag #walkingsticks #disabilitypride #disabilitysupport #spoonie #spooniewarrior #spoonies #spooniecommunity #fibromyalgie #degenerativespinedisease #smallbusiness #ehlersdanlossyndrome #hypermobility #hypermobilitysyndrome #warrior #chronicillnesswarrior

[sweettoothart]

Visual expression of my chronic illness/pain

Explanation The black separated parts are subluxations exeped the black in the tummy that's gi problems. The red parts (except tail) are nerve pain, cramps and migraines/cluster headaches. The background is brain fog/cfs. Bandaids are eczema/allergies

#heds #eds #cfs #ChronicPain #EhlersDanlosSyndrome #Disability #furry #hypermobileEDS #artists on tumblr #my art #my ocs

[lovethisfat]

Falling over while taking selfies is my specialty *winks with both eyes* . . . . . . #eds #pots #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome https://www.instagram.com/p/ChhV_TIOc99/?igshid=NGJjMDIxMWI=

#eds #pots #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome

[boosbeesandbuddies]

*BoosBeesAndBuddies Mini Scoops* WHAT IS THIS?? These scoops provide a huge variety of BoosBeesAndBuddies products, including confetti scoops, Squishmallows, jewelry, candy, fidgets, keychains, and more! HOW DOES IT WORK?? With each scoop, you are guaranteed at least 15 items, but most scoops have 20 plus! Each bead correlates to a goodie! If you are curious on how it works, head on over to BoosBeesAndBuddies on Tiktok for some examples! WHAT’S THE PRICE?? Mini Scoops are $20 each! WHY SHOULD I SUPPORT YOU?? My name is Jessalynn Marie. I have Ehlers-Danlos Syndrome and many other comorbid complications. I started my shop to bring awareness to disability & promote inclusivity! BoosBeesAndBuddies is my way of combining my passion to help others and my need for work accommodations. My disability prevents me from working a typical job. Between the fatigue, chronic pain, and health instability, working a 9 to 5 wasn’t an option for me. However, I have so much drive and ambition that I did not want to throw away. BoosBeesAndBuddies allows me to work within my means, spread disability awareness, and become financially independent. I am so thankful for all of the support that you have shown me! Every purchase, like, comment, share, and donation allows me to pursue my dreams. From the bottom of my heart, thank you♥️ #boosbeesandbuddies #smallbusiness #smallbusinessowner #smallbiz #supportsmallbusiness #supportsmallbiz #womeninbusiness #womanownedbusiness #disabledownedbusiness #supportingwomeninbusiness #business #businessowner #smallbusinesssupport #smallbusinessadvice #handcrafted #homemade #ehlersdanlossyndrome #disability #disabled #chronicillness #awareness #mastcellactivationsyndrome #dysautonomia #potssyndrome https://www.instagram.com/p/CqN0K82uvZB/?igshid=NGJjMDIxMWI=

#boosbeesandbuddies #smallbusiness #smallbusinessowner #smallbiz #supportsmallbusiness #supportsmallbiz #womeninbusiness #womanownedbusiness #disabledownedbusiness #supportingwomeninbusiness #business #businessowner #smallbusinesssupport #smallbusinessadvice #handcrafted #homemade #ehlersdanlossyndrome #disability #disabled #chronicillness #awareness #mastcellactivationsyndrome #dysautonomia #potssyndrome

[stacyspoonley]

A #dayinthelife of a #spoonie: Festive #stpatricksday with the 'rents. I can't stress how good it is to get out of the apartment, especially to spend some time with #family . Cabbage, potatoes and carrots didn't know what hit 'em. Then my #gastroparesis didn't know what hit it. 😶 . . Rockin my @moetheband #moedown themed "Vote Rex" (@rex_a_vision ) shirt and sequinned suspenders. Yes, it's my only green shirt lol. #symptoms #dysautonomia #pots #irish #primaryimmunedeficiency #mastocytosis #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl @rarediseasedayofficial @rare @rareis___ @rarediseasedayus #invisibleillness @medtronic @chronicillnesshumor (at Lake Ronkonkoma, New York) https://www.instagram.com/p/Cp84e_fN6Rs/?igshid=NGJjMDIxMWI=

#dayinthelife #spoonie #stpatricksday #family #gastroparesis #moedown #symptoms #dysautonomia #pots #irish #primaryimmunedeficiency #mastocytosis #mastcellactivationsyndrome #dreads #raredisease #spoonielife #dreadlocks #systemicmastocytosis #ehlersdanlossyndrome #research #cure #chronicillness #curvygirl #invisibleillness

[thelifeoflorna]

~4/2/2023~ Had quite a slow morning snuggling at home with my Bella and got distracted playing Sims for longer than I would have liked but hey ho! My brothership finally asked about my ADHD assessment (I told him about it on the morning of the appointment) - told him the outcome of the assessment and his response wasn’t exactly helpful - he seemed to take from it that I was exactly like him and questioned whether I was autistic (or ASD as he put it), oh and he’s read about PoTS recently and found out it sorts itself out in a few years so I shouldn’t worry too much :/ - swiftly decided I needed to leave that conversation. Got the bus to Brighton for a walk along the seafront - started reading a new book I ordered - Recovery Is My Revenge by Carolyn Spring - really liking it and finding it powerful so far. After seafront walk, went to Starbucks to write therapy journal, but an issue with my fountain pen stalled me a bit :/ Decided to order a new one, but then saw Paperchase had a fountain pen that looked cool and was fairly cheap - so headed over to Churchill Square to look for it - discovered that a lot of the Paperchase stores are closing - sad times :( Did find the fountain pen, which was reduced in the sale, but when I got home discovered it doesn’t take the usual coloured cartridges I have - ended up having a big sort out of my stationery in the evening as discovered I now have 3 different fountain pens that all take 3 slightly different cartridges that almost look the same! Had a list of things I needed to do, but other than pencil case sorting, I ended up distracted by reading about titanic survivors again… 🦄 #instadaily #instablog #update #mentalhealth #dissociativeidentitydisorder #cptsd #actuallyautistic #traumarecovery #edrecovery #anxiety #chronicillness #disability #pots #potsie #dysautonomia #positivevibes #recovery #jellycats #actuallyautistic #ehlersdanlossyndrome #fox #tumbletuftfox #jellycatobsessed #foxyloxy #jellycatsofinstagram #foxlove #woodlandanimals #jellycatcollection https://www.instagram.com/p/CoRp1_mK7SQfTyAVVO1BF7sXYu9dNoR4WkFG8s0/?igshid=NGJjMDIxMWI=

#instadaily #instablog #update #mentalhealth #dissociativeidentitydisorder #cptsd #actuallyautistic #traumarecovery #edrecovery #anxiety #chronicillness #disability #pots #potsie #dysautonomia #positivevibes #recovery #jellycats #ehlersdanlossyndrome #fox #tumbletuftfox #jellycatobsessed #foxyloxy #jellycatsofinstagram #foxlove #woodlandanimals #jellycatcollection

[nindurmeleth]

#rarediseaseday #ehlersdanlossyndrome #papershorts https://www.instagram.com/p/CpOY6ubuLn8/?igshid=NGJjMDIxMWI=

#rarediseaseday #ehlersdanlossyndrome #papershorts

[diagnosed-weird]

My name is Sylvia. Silver. DiagnosedWeird. I am Autistic, I have hEDS. I am a mother, daughter, girlfriend, friend, caregiver, and artist. I make stickers. I advocate for chronic/invisible illnesses and Autism.

#myedschallenge #autistic adult #neurodivergence #autistic feels #ehlersdanlossyndrome #ehlers danlos problems #eds things #edsawarenessmonth #zebrastrong #ehlers danlos zebra