#ehlersdanlossyndrome

MOST RECENT

I can remember when I first went on medication for PoTS, and I went back to the specialist after a few weeks to tell them it wasn’t working for me. And her response was “well I don’t know what you expect, there’s no magic cure”
No, I am aware of that, however I would like the benefits of the medication to outweigh the side effects 🙃 #chronicinsta #chronicallyill #chronicillness #chronicillnesses #chronicillnesswarrior #spoonie #spoonies #spoonielife #spooniefamily #spooniestrong #spoonieproblems #spooniewarrior #pots #potsie #potssyndrome #potsawareness #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #invisibleillness #butyoudontlooksick #relatable #funny #ehlersdanlossyndrome #edsawareness #medicalzebra #zebra

Heading into Leeds this evening to have dinner with friends. Won't lie...had a big old panic attack earlier this afternoon about it, but I worked my way out of it cos it's so important that I keep my links to my friends and get out and have a life, no matter how hard it is. I'm on the bus so the first hurdle is done! Should be easy for the rest of the evening until I travel home. So looking forward to hugging my peeps! If only @lauraclarkeex wasn't still in Oz! Rude! 😂
#disabledtravelling #dinnerwithfriends❤️ #leedscitycentre #ehlersdanlossyndrome #edslifestyle

So today I FINALLY made it up Pen Y Fan 💖 This may seem a easy walk for some, but for me having always struggled with my mobility and autonomic dysfunction this was HUGE!! So that's another goal crossed off the post cancer bucket list 😉 I made sure I was prepared with the following: * Ankle supports
* Orthotics
* Hiking boots
* Two walking poles
* Kinesiology tape
* Plenty of water
* Salt (to regulate my tachycardia)
* Raw veggies
* Raw natural protein bar
* Music
* Emergency banana (to regulate my blood sugars)
* Many breaks (mainly on the way up)
* A determined mental attitude.....BOOM 💥💥💥
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#Penyfan #climbing #hiking #mountain #mountains #Brecon #fitness #wales #walks #walking #health #EDS #ehlersdanlossyndrome
#posturaltachycardiasyndrome
#lymphoedema #cancer #cancersurvivor #chronicillness #disability #invisabledisability #goals

I’m trying not to work her much while she’s still on medication (working on building up her internal eye pressure to normal levels, her inflammation is completely gone), but some days it can’t be helped. Did too much yesterday without her and now I’m paying for it. So girl is back to carrying my emergency meds and everything else. ——————————————
#bootheserviceshiba #shibastagram #shibasofinstagram #dogstagram #dogsofinstagram #servicedog #servicedogsofinstagram #servicedogsofig #ehlersdanlossyndrome #invisibledisability #fibromyalgia #hypermobility #chronicpain #chronicillness

#summer #me #today #ehlersdanlosgrrrls #ehlersdanlossyndrome #dislocatedshoulder #disability #chronicpain #chronicallyill 🍓🌞 koska viime kesä täysin pimennossa, yritän ottaa tästä kesästä irti niin paljon ko mahdollista!

Ugh I didn't see the puddle on the floor in the bathroom on the airplane. Take a guess what it smelled like... So now my hips/body are screaming at me and I need to burn my shoes. #rawarrior #ehlersdanlossyndrome #autoimmunewarrior #chronicpain #flyingsucks #Ineedtoburnmyshoes

Last week I was given an absolute great gift from my awesome and loving husband... You see 18yrs ago I was able to go skydiving and it was the most absolute amazing and stress relieving (yes I said relieving, my worries blew away in the sky), it was breathtaking and magnificent! My mom gave it to me as a gift even though I had this horrible and painful scoliosis. My mom helped teach me to live life the best I can, when I can.

So let's fast forward to last week... I would unquestionably go skydiving if I was able to. However, when you are #FusedFromSkullToPelvis it isn't to possible anymore. The force of free-falling my head or body can't take. So, I got to do the next best thing! I was in the co-pilot seat and it was incredible! The best part was descending because then I could see over the dash of the cockpit. I wish I had more pictures but my phone messed up. The experience was a blast that I hope to be able to do again.
#AlwaysLookingForward #EhlersDanlosSyndromeKyphoscoliosis #EDS #EhlersDanlosSyndrome #Scoliosis #ZebraStrong

My latest blog post is up link in bio! I talk about feeling lonely in the summer when people are doing fun things. #blogger #chronicillness #spoonie #mentalhealth #fibromyalgia #spondylosis #ehlersdanlossyndrome #depression #loneliness #lonely

This is the face of one of the happiest girl in the world! Two nights ago I had the privilege to attend “Peter Pan” at @officialnsmt The tickets were a gift purchased back in the winter months wayyy before we could have anticipated all of the medical craziness that has been going on. Peter Pan was my absolute favorite stage musical as a kid (all hail Cathy Rigby) and has been one that I often turn back to for comfort when things get really tough. I STILL regularly have dreams of flying onto a stage on a wire. So as you can imagine,
I had been absolutely giddy since December to get to see it live...
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...And then everything went wrong and I found myself sick and hours away and suddenly my dreams were starting to look more and more like just dreams. But I am nothing if not determined! What can I say? Sometimes I have to crow! 😂
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I made it my goal to get to that show (even if it meant driving home between surgeries; it didn’t ). So Saturday came, and there I was, 5 days out of my third neurosurgery in a week with 23 staples and 4 stitches still in, my leg strapped in an immobilizer and my neck brace (not pictured) supporting the head that was too exhausted to support itself. BUT I MADE IT! And you know what? It was the first time I can ever remember seeing a show with no headache from the lights and I was actually able to distinctly see every little detail. This shunt is working! Not only did I make it, but I conquered it! And it was glorious and magical and I may never ever stop smiling. I felt my heart flying up there with those actors and Im still waiting for it to come down. So thank you to the North Shore Music Theater and Cast for making my year with such an incredible production for those of us who just Won’t Grow Up. 🎩🌂🍃🌕🌃🍄🐊🕓

#straightouttacollagen waking up yesterday after 8+ hours working, with very little rest before it was time to mom again. This is exactly why my Ortho wants me to wear my soft wrist braces when I sleep. 😅
Sometimes I forget that I don’t really notice when I’ve overdone it until the day AFTER. I’ll be saving my spoons over the next few days to make up for it. (My embarrassing confession here is that I didn’t even change my shirt when I got home. My shoulder was so subluxed I wasn’t able to by myself.) #chronicallyfabulous #amiright ? -
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#chronicparenting #chronicillnesswarrior #ehlersdanlossyndrome #subluxation #chronicpain #chronicfatigue #zebrastrong #spoonielife #edsproblems #ehlersdanlos #spoonie #dysautonomia #invisibleillness #laughingzebra #humorthroughpain

3 days until my bathlift is fitted 😊 I may only be in this property for a few weeks but at least it will be more accessible for me. I hate how this illness takes away basic independent thing... but at least il be able to do this with confidence now without risk of my hip giving out or passing out 😊
#neptunebath #bathlift #bath #independent #chronicpain #chonicillness #chronicillness #ehlersdanlossyndrome #eds #hypermobility #hipdislocation #homeless #emergencyaccommodation #bathroomadaption #mobility #mobilityissues #follow4like #followforfollowback #followbackalways #followforfollowback #followtrain

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