Re: Looking for an article/Cindy

[Guest guest]

I think I have this ...is this it? If not, I have others...

HAPPY EASTER!

Sue J.

Friends and family

How many have found it difficult - almost impossible to share with our

partners and families our feelings about living with HMS/HEDS. A member

wrote this letter to explain her feelings and has allowed us to reproduce it

for others to use:

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 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.

Looking for an article

> Hi Everyone

> It was in a personal letter form addressed to family and friends

> trying to explain what it was like to live with such a condition. If

> anyone has this article or knows where I can find it I would be

> greatful! Thanks in advance

> Stacey

>

> **************************************************

> , Is this it? Cindylouwho

>

> Friends and family

>

> How many have found it difficult - almost impossible to share with our

> partners and families our feelings about living with HMS/HEDS. A

member

> wrote this letter to explain her feelings and has allowed us to

reproduce it

> for others to use:

>

> 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 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.

>

>

>

>

>

>

[Guest guest]

Re: Looking for an article/Cindy

I think I have this ...is this it? If not, I have others...

HAPPY EASTER!

Sue J.

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.....

*****************************************************

Thank you Sue, It was looking for this letter.

Cindy

[Guest guest]

Amen to that. This goes for VEDS as well even though I do not have all the

pain/joint issues I feel for every one of you.

Betty

Looking for an article

> > Hi Everyone

> > It was in a personal letter form addressed to family and friends

> > trying to explain what it was like to live with such a condition.

If

> > anyone has this article or knows where I can find it I would be

> > greatful! Thanks in advance

> > Stacey

> >

> > **************************************************

> > , Is this it? Cindylouwho

> >

> > Friends and family

> >

> > How many have found it difficult - almost impossible to share with

our

> > partners and families our feelings about living with HMS/HEDS. A

> member

> > wrote this letter to explain her feelings and has allowed us to

> reproduce it

> > for others to use:

> >

> > 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 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.

> >

> >

> >

> >

> >

> >