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Monday, 10 October 2011

Because there is little awareness about EDS and HMS in the UK, I got my thinking cap on and thought of ways I could fundraise for a charity organisation that has helped me greatly 'The Hypermobility Syndrome Association'. (HMSA) http://www.hypermobility.org/

I asked fellow EDSers on facebook for fundraising ideas and the response was great. Ideas such as sponsored snooker marathons, x factor nights, bungee jumping etc all sprung to mind. All of them sounded fantastic but to start me off I needed something a little more local and low key.

So I came up with a raffle, of which all proceeds will go to HMSA.

I shall keep you updated with the process, what the prizes are and eventually how much is raised!

Below is a song that sums up how you can feel if you have an invisible disability.

So its only 4:49pm and I have already retired to my bed zzz. Aching joints after a long day at college means one thing, time for a hot bath and then rub some soothing lotion on my joints!

Haven't had a hospital appointment in a few months now, makes a change from the practically weekly visits - however I do feel a tad lost in the system. The best hospital treatment I get is meeting my friends that I get together with monthly in a Chronic pain support group in London. However...

extortionate train prices + physical fatigue = me missing the meetings :(

But I still keep in regular contact and shall hopefully see them all soon :)

My latest EDS achievement?
In an attempt to get my previous strength and ability back I have started going to the gym. I know what you're thinking, "urgh, too much hardwork" and yes, I agree, it does make my joints ache but I find the longterm improvements worth the pain :)

I have just started my gym routine and once I have devised a structured exercise plan I shall let you know how its going in 'A snippet of my life (part 3)'.

Abi :)
"Dear Loved One,

I am sending this letter to help you understand my feelings as I deal with HMS/HEDS and the changes it brings to my life. I am scared. I don't know what the future holds for me. Will I end up disabled, in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. HMS/HEDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is the disease I am angry with, not you.

Please don't assume you know what is best for me. HMS/HEDS has affected my joints, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Don't tell me how Auntie Mary cured her joint problems by drinking vinegar or any other supposed remedy. I have done much research and I keep up on current treatment options. I speak with my doctor regularly, if there is a possible treatment out there, I will know about it.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu, tired, achy and sore. Please keep that in mind.

I want you to know that the pain from HMS/HEDS moves around. Just because I climbed the stairs yesterday doesn't mean I can do it today. Yesterday my shoulder was throbbing; today it is my knee, who knows what it will be tomorrow.

Finally, please remember that I am the same person I was before I was diagnosed with this; HMS/HEDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you." - http://www.hypermobility.org/family.php

Sunday, 9 October 2011

Here are some articles I have stumbled across about Hypermobility Syndrome (EDS type 3).



Check them out!

Got any news stories? Either post them in a comment or send them to hideandseekid@hotmail.co.uk to be featured on this blog :)
A fellow EDSer and 'Zebra' lost her lifelong battle to the condition not long ago. She had many friends with the condition and will be sadly missed by us all, but never forgotten. RIP Alexa Simmons <3

Image created by Rhiannen in memory of Alexa.