#myedschallenge

[neetpunk]

Day 25 – The Best Advice I’ve Received

What’s a valuable tip from a provider or fellow zebra?

Stop doing party tricks lol, it really does fuck things up sometimes.

[dravenxivuk]

9. Mental Health Awareness 

It's a struggle. Nobody prepares you for how to deal with a body that's falling apart around you. I compare how active I was in my early 20's to how little I can do now and it's honestly devastating. 

And there's no support for that. The couple of times I’ve approached a therapist about it they’ve been so obviously inexperienced at dealing with chronic illnesses that I’ve given it up.

[diagnosed-weird]

May is right around the corner, and it's also Ehlers-Danlos Syndromes (EDS) & Hypermobility Spectrum Disorders (HSD) Awareness Month!

Join The Ehlers-Danlos Society and raise awareness, visit www.ehlers-danlos.com/may-awareness

(Mention 3 of your friends or more here)

[yamikuzu]

[thischarmingamy]

Ehlers-Danlos Awareness Month

.@TheEDSociety It’s #EhlersDanlosAwarenessMonth!Here’s a recap of my first 5 days of #MyEDSchallenge. #EhlersDanlos #Spoonie #Zebra

May is Ehlers-Danlos syndrome (EDS) Awareness month. The EDS Society has issued a social media challenge to raise awareness. Today is day five and I’ve been making my posts on Instagram. Today’s got rather lengthy, so I figured I may as well start sharing them on the blog as well! Pardon the person icon on number 16 Day 1: This Is Me This Is Me. I’m all bendy. I’m more bendy than this; it was…

View On WordPress

[sylviaplathologist]

Hey everyone, I'm participating in the May 2020 Ehlers-Danlos Syndrome Awareness Challenge to help fundraise for the Ehlers Danlos Society! I will be partaking in various challenges like the photo a day on my instagram @lujanewest and biking for the walk n roll! I set up a fundraising page that I attached the link to and you can also read my story there. All donations will go to the Ehlers Danlos Society, a global community dedicated to saving & improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, & related conditions. My goal is to raise $100 but it would be so amazing to go past that. Any amount helps and means so much. Help me reach my goal to improve the lives of all those living with EDS, world wide.

Support the Ehlers Danlos Society and help them provide resources and help to people with EDS and HSD

Together we can improve the lives of all with EDS, world wide I have joined the May Awareness Month Challenge to spread awareness and raise

[dravenxivuk]

I’m a bit behind with my EDS Challenge

10. Coping / grieving

"I don't know how you cope?" I cope because I have to, and hearing that gets very old. But I grieve for the life I had before I became mostly housebound. I've grieved for hobbies, friends, job and for the me I used to be.

11. What brings me joy? 

So many little things! My cats, completing a good art, chatting to friends, finding a fun game, absorbing myself in a new hyperfixation, the way my Wife smiles at me, my favourite songs, the sun coming through the window... things!

12. Supportive healthcare people 

My wonderful, magical physio lady. She spotted the hEDS after others didn't, she pushed for the referral to the Hypermobility Unit, and she's looked after me for over 10 years now. Wonderful woman.

[dravenxivuk]

15. How long was your journey to diagnosis?

I was a bendy child, I got ‘growing pains’ in my knees around age 8 or 9. They never went away. Through my late teens and 20′s I started disintegrating and was variously diagnosed with post-viral fatigue, chronic fatigue and fibro while being given handed increasingly strong painkillers and being told there was nothing anyone could do. Didn’t get properly diagnosed with hEDS, PoTS and Chronic Migraines until I was 37.

I can’t think about that too much because it makes me angry to look back at the missed opportunities to help me and how a lot of the incorrect advice I was given just made me worse.