Dear friends

I am writting 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.

Fuckin hell it's Mills 'n' Boon stuff ...... Sob sob sob :-), Gissa a shout when you need someone to push your wheelchair mate, ill try and ease up kerbs so you don't fall out .... Honest I will

that's the spirit don't want sympathy and a good piss take makes me laugh

Piss take I can do .... Take you for a piss I won't, regardless how bad your joints are you will have to get your own cock out or piss ya pants.

One of my best mates matt, ill always be here for ya !!!!!
We gunna take 2008 by storm mate !

You can get his cock out for a piss then Dave, i'll just wheel him into the bogs

Your a great lad, and have a great attitude. You will always have my support mate:-)

god its all about u ah matt!!!! lol

didnt even know about this mate, will never treat u any different fella!!

big love pal !!!! ;o)

well what do i say to that?!?! appart from..........

im glad its Dave that will be gettin the job of helping you go for a piss and not me! lol

Take it easy m8, hope all goes well for ya.

P.S. you want invites still well heres an invite for ya......Stimulation 18.1.08 @ DV8!!!! lol

it will be a while till im in a wheel chair but thanks for the support guys.
much love to you all.

it will be a while till im in a wheel chair

U reckon .... It could be arranged lol

My 10 year old son has HMS. We have known about since he was 5 he uses a laptop in school as he can't write with a pen properly and any prolonged drawing causes him to ache. He's accident prone as his ankles and knees, as his hands and arms don't have a proper lock on them. He has great party tricks that his limbs bend all over the place.

It is something he will always have to live with, the advantage he has is that he has always know about it so he has learned there are some things he can't do and somethings he has to adapt himself for.

His future.. who knows! No one knows what is around the corner Brand's hyper-tensile joints means there will never be a cure but hopefully the other symptoms he has to look forward to as his body gets older will have medical technology to help.

Matt I will study you to help my son, and when you need someone to take the piss speak to Mark or Heather, K8 will jump on you just to make sure your leg hurts as much as the other one, Brandon will do his wobble for you, Cameron will most probably shake his head at all of us and me well...

I'll show you how to use facebook or any other site that comes up talk about pictures and photoshop and any other bollocks you wish to talk about and tell you life is pretty shitty sometimes but it is for living and maybe help you to adapt xxx

I'll show you how to use facebook

yeah and i'll still send you every sexually deviant like application on facebook that i can find as well as trout slap you :o)

My 10 year old son has HMS

Is that 'Her Majesty's Sickness'?

Is that 'Her Majesty's Sickness'

what she got it and all fuck

and theres me thinkin that hms had somethin to do with wat went on in the toilets of heaven and other clubs like that
"hot man sex"

Not the first thing that popped in to my mind George lol .....

Not the first thing that popped in to my mind George lol .....

for the fear of people finding out lol

as long as thats all that popped in dubs hahahahhahhaha