(Source: sami-shortcake, via thecvsgirl)
hi im 17 and have Ehlers danlos syndrome
since ive started this blog ive gotten to talk to lots of you with eds and for me its been a great support
so if you ever need to talk about eds or want to know about it my ask is always open :)
Follow me on twitter :D : @Ehlersdanloss
(Source: sami-shortcake, via thecvsgirl)
Going to Portugal next week :) can’t wait so excited, I’m still really sore so I’m hoping I’m feeling much better next week :)
EDS Awareness – Tumblr, do your bit!
Right guys, I’ve heard Tumblr can do miraculous things. Can we please do one today?
Kitty Richardson, age 12, UK, has written a song called ‘The Cure’ for EDS Awareness Month. Kitty’s got EDS and like so many of us, she has had quite a struggle with it. Her story was recently told in the Daily Mail (http://www.dailymail.co.uk/health/article-2295159/Girl-12-joints-dislocate-TEN-times-day—shes-playing-piano.html). Despite EDS, she has continued in her love of music and, as you can see from this song, she’s really quite a star.
I am calling on you to support her and her song and in doing so supporting EDS Awareness Month. She commented somewhere that she wanted the video views to get to 1000 and comments to get to 25. Can we get it to above and beyond that? I think so. Can we get it beyond? We can try. With enough publicity, Kitty might be able to get this onto iTunes or a CD which would mean a HUGE increase in EDS Awareness.
PLEASE please do your bit today and make her day – if she’s in the UK, she’ll be at school for the next few hours and wouldn’t it be amazing to surprise her by getting her to her target by the time she gets back for the weekend?
Please view, share, comment on her song:
http://www.youtube.com/watch?v=FXLlMtdzKxM&feature=youtube_gdata_player
Reblog anywhere and everywhere - the more countries we can get involved the better.
You don’t need to have EDS to help. If you want to support a girl who has persevered through a whole lot of rubbish then please spend a few seconds on her channel. I don’t know this girl but I do know that even at her young age she has inspired me.
Thank you!
xxx :-)
The Cure – Kitty Richardson
I struggle every second of every hour
I feel like I have no power
But I have to stay strong
Even though you can’t see anything wrong
Doesn’t mean I made it up all along
Through all the pain
No one knew
I had EDS
EDS should be recognised
Even if it’s rare
Somewhere there is a cure
We just need to find it
Then the pain will stop
No more having to hide it
You and I look the same on the outside
But inside I’m falling to pieces
We need more people to be aware of EDS
Ehlers-Danlos has six types
One of which will take your life
Unless we find a cure
You can help the smallest bit
Trust me – you won’t regret it
Saving someone’s life is the best deal of all
EDS should be recognised
Even if it’s rare
Somewhere there is a cure
We just need to find it
Then the pain will stop
No more having to hide it
You and I look the same on the outside
But inside I’m falling to pieces
We need more people to be aware of EDS
You want to help
The only thing stopping you is yourself
Ride a bike, sing a song
With your help, it won’t take a long
You jump – you take it for granted
I wish I could do the same
I would jump with you
But EDS is to blame
Somewhere there is a cure (somewhere)
We just need to find it (Help us find it)
Then the pain will stop (oohooh)
No more having to hide it
You and I look the same on the outside
But inside I’m falling to pieces
We need more people to be aware of EDS (of EDS)
I struggle every second of every hour
I feel like I have no power
But I will stay strong.
This girl in the UK wrote and recorded a song about EDS. She’s only 12, I think… but it’s really good. I found it on EDS UK’s Facebook page and thought I’d share. ;Xxx :-)http://m.youtube.com/#/watch?v=FXLlMtdzKxM&desktop_uri=%2Fwatch%3Fv%3DFXLlMtdzKxM
Nothing like waking up more tired then what you were when you went to bed
This is going to be a long day :/
My shoulder is still subluxing, it’s gone in and out at lest three times today
I seen my physio I have hydro this week so hopefully been in the water can help relief the pain a little
I’m so tired everyone’s telling me how tired I look all I want to do is sleep but I’ve exams next week and being stressed over them Is just making me feel ten times worse
I think ill sleep for a while then attempt to study, but you know that stage when your in pain and you just don’t want to move well that’s me right now :(
How’s everyone else doing ? :)
whatshouldwecallchronicillness:
Normally:
When I’m feeling extra sick:
(Source: whatshouldwecollegeme, via mylifewitheds)
Top: My energy ran out a week ago
Bottom So I’m just running on pride and stubborn now