Guest guest Posted April 8, 2004 Report Share Posted April 8, 2004 Hi Everyone A while ago (like probably about a year ago) I read an article that I really enjoyed but I dont remember what it was called or where I found it or the specific information sent in it. It was either about invisible disorders, hypermobility syndrome or ehlers danlos syndrome. 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 From: Stacey To: ceda Subject: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 From: Stacey To: ceda Subject: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 From: Stacey To: ceda Subject: 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Cindy Thank you so much!!! That is the exact thing I was looking for! It seems to explain things so well!! Thank you again Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Cindy Thank you so much!!! That is the exact thing I was looking for! It seems to explain things so well!! Thank you again Stacey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 Cindy Thank you so much!!! That is the exact thing I was looking for! It seems to explain things so well!! Thank you again Stacey Quote Link to comment Share on other sites More sharing options...
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