Guest guest Posted June 8, 2012 Report Share Posted June 8, 2012 On Jun 8, 2012, at 10:14 Chelsea wrote: > Needless to say, she hasn't spoken to me since. > I'm still weak and shakey from her visit. Hi Chelsea, As hard as it is to live with our conditions, it seems awfully unfair to have to continually explain our conditions to loved ones, friends, acquaintances, co-workers, others and be ignored or misunderstood. Yet, that awfulness happens all the time. Even people with our same conditions may ignore our needs or misunderstand our needs. We are each so different in our belief systems, misunderstanding is common to everyone even while speaking the same language, even the same sub-cultural language. It falls on us to appreciate the difficulties of misunderstandings and plan for it in our daily lives. Again, it is unfair since it usually means saying no when we really really wanna say yes, leads to often overwhelming isolation, leads to spending too much time alone. But at he point you are at right now, weak and shaky, overwhelmed by a friend, a place I and most people reading this have experienced many times, more alone time may be preferable. We who are reading this may communicate by email, maybe by text, by phone, by Twitter or Facebook, We may plan short, hour-long or shorter visits at our homes. My brother stops by to offer me a hug once in awhile. Our helpers who come to help us in our homes may become friends. The other day, I asked the aide who drive me to eye doc's to bring her son to doc's and have a burger with me. It was fun. I learned things eating burgers with them I don't learn when in my home explaining how I want things around me. Even my helpers do not understand. Even my best doc doesn't understand. Maybe you have to experience living with these conditions to truly understand. I am grateful there is so much misunderstanding of what it is like to live with CFS, ME, FMS, OI, Lyme, GWS etc. If there were more understanding, there might be more people with our conditions. If everybody understood through experience what living like this is like, then, who would bring the wonders of our age to our doors. I am grateful for consistently reliable electricity for cable, phone, products we depend upon like groceries and meds, supplements, clothing. I am grateful for these things I depend upon daily and their delivery by people who can for whom I am also grateful. toni cf-alliance.tripod.com/ from iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2012 Report Share Posted June 8, 2012 On Jun 8, 2012, at 10:14 Chelsea wrote: > Needless to say, she hasn't spoken to me since. > I'm still weak and shakey from her visit. Hi Chelsea, As hard as it is to live with our conditions, it seems awfully unfair to have to continually explain our conditions to loved ones, friends, acquaintances, co-workers, others and be ignored or misunderstood. Yet, that awfulness happens all the time. Even people with our same conditions may ignore our needs or misunderstand our needs. We are each so different in our belief systems, misunderstanding is common to everyone even while speaking the same language, even the same sub-cultural language. It falls on us to appreciate the difficulties of misunderstandings and plan for it in our daily lives. Again, it is unfair since it usually means saying no when we really really wanna say yes, leads to often overwhelming isolation, leads to spending too much time alone. But at he point you are at right now, weak and shaky, overwhelmed by a friend, a place I and most people reading this have experienced many times, more alone time may be preferable. We who are reading this may communicate by email, maybe by text, by phone, by Twitter or Facebook, We may plan short, hour-long or shorter visits at our homes. My brother stops by to offer me a hug once in awhile. Our helpers who come to help us in our homes may become friends. The other day, I asked the aide who drive me to eye doc's to bring her son to doc's and have a burger with me. It was fun. I learned things eating burgers with them I don't learn when in my home explaining how I want things around me. Even my helpers do not understand. Even my best doc doesn't understand. Maybe you have to experience living with these conditions to truly understand. I am grateful there is so much misunderstanding of what it is like to live with CFS, ME, FMS, OI, Lyme, GWS etc. If there were more understanding, there might be more people with our conditions. If everybody understood through experience what living like this is like, then, who would bring the wonders of our age to our doors. I am grateful for consistently reliable electricity for cable, phone, products we depend upon like groceries and meds, supplements, clothing. I am grateful for these things I depend upon daily and their delivery by people who can for whom I am also grateful. toni cf-alliance.tripod.com/ from iPad Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 i am really sorry that that happened. I have had similar experiences with people who just dont get it and its more frustrating than living with it!!! Broken in Two Even when you try to prepare a houseguest for staying with you, sometimes they just don't get it. A good friend stayed with me for 5 days and I explained to her, I need naps daily, please treat my house like your own & make your own breakfast since I don't wake early & so on. After the first day, I realized she was expecting to be treated like a guest and I don't have the energy/stamina for that anymore. By day 4, I had to ask to leave and stay in a hotel. I wasn't angry, I just had to put my health first. Needless to say, she hasn't spoken to me since. I'm still weak and shakey from her visit. Hopefully I'll get back to my usual malaise with a few more days of intense rest. And she'll realize that I have a chronic illness and she was insensitive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2012 Report Share Posted June 9, 2012 i am really sorry that that happened. I have had similar experiences with people who just dont get it and its more frustrating than living with it!!! Broken in Two Even when you try to prepare a houseguest for staying with you, sometimes they just don't get it. A good friend stayed with me for 5 days and I explained to her, I need naps daily, please treat my house like your own & make your own breakfast since I don't wake early & so on. After the first day, I realized she was expecting to be treated like a guest and I don't have the energy/stamina for that anymore. By day 4, I had to ask to leave and stay in a hotel. I wasn't angry, I just had to put my health first. Needless to say, she hasn't spoken to me since. I'm still weak and shakey from her visit. Hopefully I'll get back to my usual malaise with a few more days of intense rest. And she'll realize that I have a chronic illness and she was insensitive. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2012 Report Share Posted June 10, 2012 Your post makes me think of how we, CFS sufferes etc.., need to be as proactive in getting our gov'ts to do the public and medical educating! think of the PSAs you see in regards to other medical conditions, that is how Millions of people gain knowledge and understanding. Otherwise it is like peeing in the Ocean and expecting to see a large result. Yes, every little bit helps, but with our lack of energy, it's an incredibly uphill battle! GG > > > Needless to say, she hasn't spoken to me since. > > I'm still weak and shakey from her visit. > > Hi Chelsea, > > As hard as it is to live with our conditions, it seems awfully unfair to have to continually explain our conditions to loved ones, friends, acquaintances, co-workers, others and be ignored or misunderstood. Yet, that awfulness happens all the time. > > Even people with our same conditions may ignore our needs or misunderstand our needs. We are each so different in our belief systems, misunderstanding is common to everyone even while speaking the same language, even the same sub-cultural language. > > It falls on us to appreciate the difficulties of misunderstandings and plan for it in our daily lives. Again, it is unfair since it usually means saying no when we really really wanna say yes, leads to often overwhelming isolation, leads to spending too much time alone. > Quote Link to comment Share on other sites More sharing options...
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