Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Darcy wrote about the letter to " normals " . I have this letter after getting from this support group posted on my desk. You would not believe the difference in the way I have been treated here at work. I also have the opportunity to write a weekly newsletter here and this week I actually got the nerve up to write in my health corner concerning Fibro. I didn't want anyone to think I wanted their sympathy here but I did on the other hand want everyone to understand what was going on and what Fibro is all about. Amamzingly, I have found out that two gentlemen that I work with have wives with fibro. One came up to me out of the blue and says, " Get ya some sleeping pills and a hand full of pain pills girl. " (Keep in mind I work in a car dealership) lol. I'm like , " What? " He went on to explain that he had read my article about fibro and his wife has had it for some time now. She at times has to go to work in a wheelchair due to the pain in her legs. That's when I opt to stay home, but to each their own. But anyway, I can send you that letter if you want it . God Bless, a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Darcy wrote about the letter to " normals " . I have this letter after getting from this support group posted on my desk. You would not believe the difference in the way I have been treated here at work. I also have the opportunity to write a weekly newsletter here and this week I actually got the nerve up to write in my health corner concerning Fibro. I didn't want anyone to think I wanted their sympathy here but I did on the other hand want everyone to understand what was going on and what Fibro is all about. Amamzingly, I have found out that two gentlemen that I work with have wives with fibro. One came up to me out of the blue and says, " Get ya some sleeping pills and a hand full of pain pills girl. " (Keep in mind I work in a car dealership) lol. I'm like , " What? " He went on to explain that he had read my article about fibro and his wife has had it for some time now. She at times has to go to work in a wheelchair due to the pain in her legs. That's when I opt to stay home, but to each their own. But anyway, I can send you that letter if you want it . God Bless, a Faye Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 I'd like to get a copy of that letter if anyone has one they can email me. lydiajen@... ~Jen Darcy wrote about the letter to " normals " . I have this letter after getting from this support group posted on my desk. You would not believe the difference in the way I have been treated here at work. I also have the opportunity to write a weekly newsletter here and this week I actually got the nerve up to write in my health corner concerning Fibro. I didn't want anyone to think I wanted their sympathy here but I did on the other hand want everyone to understand what was going on and what Fibro is all about. Amamzingly, I have found out that two gentlemen that I work with have wives with fibro. One came up to me out of the blue and says, " Get ya some sleeping pills and a hand full of pain pills girl. " (Keep in mind I work in a car dealership) lol. I'm like , " What? " He went on to explain that he had read my article about fibro and his wife has had it for some time now. She at times has to go to work in a wheelchair due to the pain in her legs. That's when I opt to stay home, but to each their own. But anyway, I can send you that letter if you want it . God Bless, a Faye Yahoo! Groups Sponsor ADVERTISEMENThttp://rd.yahoo.com/M=229441.2311215.3726473.2225242/D=egroupweb/S=1705061\ 682:HM/A=1189560/R=0/*www.bmgmusic.com/acq/ee/q6/enroll/mhn/10/ " target=_top>http://us.a1.yimg.com/us.yimg.com/a/bm/bmg/strongartist_12_300x250.gif " alt= " " width= " 300 " height= " 250 " border= " 0 " > SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html " >http:/\ /www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 I'd like to get a copy of that letter if anyone has one they can email me. lydiajen@... ~Jen Darcy wrote about the letter to " normals " . I have this letter after getting from this support group posted on my desk. You would not believe the difference in the way I have been treated here at work. I also have the opportunity to write a weekly newsletter here and this week I actually got the nerve up to write in my health corner concerning Fibro. I didn't want anyone to think I wanted their sympathy here but I did on the other hand want everyone to understand what was going on and what Fibro is all about. Amamzingly, I have found out that two gentlemen that I work with have wives with fibro. One came up to me out of the blue and says, " Get ya some sleeping pills and a hand full of pain pills girl. " (Keep in mind I work in a car dealership) lol. I'm like , " What? " He went on to explain that he had read my article about fibro and his wife has had it for some time now. She at times has to go to work in a wheelchair due to the pain in her legs. That's when I opt to stay home, but to each their own. But anyway, I can send you that letter if you want it . God Bless, a Faye Yahoo! Groups Sponsor ADVERTISEMENThttp://rd.yahoo.com/M=229441.2311215.3726473.2225242/D=egroupweb/S=1705061\ 682:HM/A=1189560/R=0/*www.bmgmusic.com/acq/ee/q6/enroll/mhn/10/ " target=_top>http://us.a1.yimg.com/us.yimg.com/a/bm/bmg/strongartist_12_300x250.gif " alt= " " width= " 300 " height= " 250 " border= " 0 " > SEND POST TO: fibromyalgia-cfs HOME PAGE:http://www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html " >http:/\ /www.geocities.com/Heartland/Oaks/7127/fibromyalgia-cfs.html LIST OWNER: " Missy " Parrot004@...> UNSUBSCRIBE:fibromyalgia-cfs-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 a, I would like a copy of the letter if you don't mind:o) Thanks, SArah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 a, I would like a copy of the letter if you don't mind:o) Thanks, SArah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 a, I would like a copy of the letter if you don't mind:o) Thanks, SArah Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 To anyone who might be able to dig up this " Letter to Normals " , I would also love to have a copy of it. I, too, have tried everything from having friends or family to read a good copy of a research paper on it to explaining it with the flu-like symptoms and some multiplied by about 10 times. Some has worked but most hasn't. Everyone always seems to have the belief that if you look normal you are normal. My pain levels are off the scale but I refuse to sit down and let it catch up to a point. I couldn't hold my job or get a different one for the same reasons as everyone else. ---Too many days missed at work; too many days left early for DR. appts.; lifting restrictions; can't sit too long at a time; can't stand too long at a time; have to be able to take time-outs to do stretching exercises to keep from getting to stiff, sore, achy, tense, etc.; Doctors wanting me to work no more than 4 hours a day, 5 no more than 5 days a week; no stooping, bending, squatting due to back problems as well; and so forth. What I done, since getting disability is so hard and stressful and I needed the lost income was to start selling Avon Products. This is in no way a commercial or recruiting letter, I just wanted to let people know what *I* did to keep myself motivated and moving. I hate being shut up in the house all the time and if you don't keep moving since you can only minimally exercise without doing more damage or causing more pain, I have found that it makes my symptoms severely worse. With selling something like Avon, you are running your own business and are your own boss. If you don't feel like getting out and selling or talking to people today, then you can stay home. If you are having a half-way decent day then you can get out of the house (which holds down the depression from being isolated or closed-in) and can do it at your own pace and take breaks any time you want or need to. I enjoy meeting and talking to knew people and being able to help women stay beautiful, sell gifts for giving, or selling men cologne to make them smell good or give a gift to his best girl makes me feel good about helping others in a way that I'm still capable of and that I am still useful. I have found this to be the BEST therapy for me. FMS is a very disabling disease in various degrees. But I am a firm believer that if you sit around feeling sorry for yourself because you have a disabling disease that has no known cure and you are afraid of doing anything due to the possibility that it *MAY* cause more pain or discomfort, you are asking for it to become worse. Remember the old and common saying that if you snooze, you lose? Well, I believe that with a muscle-effecting disease that if you don't use it, you will lose it (so to speak). I don't plan on losing my ability to walk or move if I have a chance on keeping it from happening. There's too much in life that I want to enjoy yet. I am not dead, I am disabled and slow-moving. If I stay steady and pace myself, take frequent breaks and stick to what I believe in, and keep hope that I will not get worse and may possibly get to play with my grandchildren when it comes time for my kids to have kids of their own, it will make my life worthwhile whether it's painful and miserable at times or not! Remember that this is what *I* believe and what has worked for *ME*, NOT what I think everyone *HAS* to do! But absolutely do one thing, not for me but for yourselves! NEVER LOSE HOPE AND NEVER GIVE UP! IT'S BEEN PROVEN THAT MIRACLES DO HAPPEN EVERY DAY AND SOME DAY IT WILL BE OUR TURNS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOVE AND GOD BLESS YOU ALL AND MAY EACH AND EVERY ONE OF YOU FOLLOW THE RIGHT PATH FOR YOU!!!!!!!!!!! Cheryl P.S. Whoever can find a copy of the " Letter to Normals " , send me a copy. And anyone who would like to chat, get advise, or talk to someone who is still hopeful despite all that life has thrown, can e-mail me direct or add me to your friends list on yahoo! Instant Messanger as " myangelicblues " . Just send me a message and let give me several times that you will be on and I will make arrangements to log on at one of those times as soon as I can. I log on at least once a day, if not once in the a.m. and at some time in the p.m. (especially if my better-half is watching a football game, Ha Ha). --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 To anyone who might be able to dig up this " Letter to Normals " , I would also love to have a copy of it. I, too, have tried everything from having friends or family to read a good copy of a research paper on it to explaining it with the flu-like symptoms and some multiplied by about 10 times. Some has worked but most hasn't. Everyone always seems to have the belief that if you look normal you are normal. My pain levels are off the scale but I refuse to sit down and let it catch up to a point. I couldn't hold my job or get a different one for the same reasons as everyone else. ---Too many days missed at work; too many days left early for DR. appts.; lifting restrictions; can't sit too long at a time; can't stand too long at a time; have to be able to take time-outs to do stretching exercises to keep from getting to stiff, sore, achy, tense, etc.; Doctors wanting me to work no more than 4 hours a day, 5 no more than 5 days a week; no stooping, bending, squatting due to back problems as well; and so forth. What I done, since getting disability is so hard and stressful and I needed the lost income was to start selling Avon Products. This is in no way a commercial or recruiting letter, I just wanted to let people know what *I* did to keep myself motivated and moving. I hate being shut up in the house all the time and if you don't keep moving since you can only minimally exercise without doing more damage or causing more pain, I have found that it makes my symptoms severely worse. With selling something like Avon, you are running your own business and are your own boss. If you don't feel like getting out and selling or talking to people today, then you can stay home. If you are having a half-way decent day then you can get out of the house (which holds down the depression from being isolated or closed-in) and can do it at your own pace and take breaks any time you want or need to. I enjoy meeting and talking to knew people and being able to help women stay beautiful, sell gifts for giving, or selling men cologne to make them smell good or give a gift to his best girl makes me feel good about helping others in a way that I'm still capable of and that I am still useful. I have found this to be the BEST therapy for me. FMS is a very disabling disease in various degrees. But I am a firm believer that if you sit around feeling sorry for yourself because you have a disabling disease that has no known cure and you are afraid of doing anything due to the possibility that it *MAY* cause more pain or discomfort, you are asking for it to become worse. Remember the old and common saying that if you snooze, you lose? Well, I believe that with a muscle-effecting disease that if you don't use it, you will lose it (so to speak). I don't plan on losing my ability to walk or move if I have a chance on keeping it from happening. There's too much in life that I want to enjoy yet. I am not dead, I am disabled and slow-moving. If I stay steady and pace myself, take frequent breaks and stick to what I believe in, and keep hope that I will not get worse and may possibly get to play with my grandchildren when it comes time for my kids to have kids of their own, it will make my life worthwhile whether it's painful and miserable at times or not! Remember that this is what *I* believe and what has worked for *ME*, NOT what I think everyone *HAS* to do! But absolutely do one thing, not for me but for yourselves! NEVER LOSE HOPE AND NEVER GIVE UP! IT'S BEEN PROVEN THAT MIRACLES DO HAPPEN EVERY DAY AND SOME DAY IT WILL BE OUR TURNS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOVE AND GOD BLESS YOU ALL AND MAY EACH AND EVERY ONE OF YOU FOLLOW THE RIGHT PATH FOR YOU!!!!!!!!!!! Cheryl P.S. Whoever can find a copy of the " Letter to Normals " , send me a copy. And anyone who would like to chat, get advise, or talk to someone who is still hopeful despite all that life has thrown, can e-mail me direct or add me to your friends list on yahoo! Instant Messanger as " myangelicblues " . Just send me a message and let give me several times that you will be on and I will make arrangements to log on at one of those times as soon as I can. I log on at least once a day, if not once in the a.m. and at some time in the p.m. (especially if my better-half is watching a football game, Ha Ha). --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 To anyone who might be able to dig up this " Letter to Normals " , I would also love to have a copy of it. I, too, have tried everything from having friends or family to read a good copy of a research paper on it to explaining it with the flu-like symptoms and some multiplied by about 10 times. Some has worked but most hasn't. Everyone always seems to have the belief that if you look normal you are normal. My pain levels are off the scale but I refuse to sit down and let it catch up to a point. I couldn't hold my job or get a different one for the same reasons as everyone else. ---Too many days missed at work; too many days left early for DR. appts.; lifting restrictions; can't sit too long at a time; can't stand too long at a time; have to be able to take time-outs to do stretching exercises to keep from getting to stiff, sore, achy, tense, etc.; Doctors wanting me to work no more than 4 hours a day, 5 no more than 5 days a week; no stooping, bending, squatting due to back problems as well; and so forth. What I done, since getting disability is so hard and stressful and I needed the lost income was to start selling Avon Products. This is in no way a commercial or recruiting letter, I just wanted to let people know what *I* did to keep myself motivated and moving. I hate being shut up in the house all the time and if you don't keep moving since you can only minimally exercise without doing more damage or causing more pain, I have found that it makes my symptoms severely worse. With selling something like Avon, you are running your own business and are your own boss. If you don't feel like getting out and selling or talking to people today, then you can stay home. If you are having a half-way decent day then you can get out of the house (which holds down the depression from being isolated or closed-in) and can do it at your own pace and take breaks any time you want or need to. I enjoy meeting and talking to knew people and being able to help women stay beautiful, sell gifts for giving, or selling men cologne to make them smell good or give a gift to his best girl makes me feel good about helping others in a way that I'm still capable of and that I am still useful. I have found this to be the BEST therapy for me. FMS is a very disabling disease in various degrees. But I am a firm believer that if you sit around feeling sorry for yourself because you have a disabling disease that has no known cure and you are afraid of doing anything due to the possibility that it *MAY* cause more pain or discomfort, you are asking for it to become worse. Remember the old and common saying that if you snooze, you lose? Well, I believe that with a muscle-effecting disease that if you don't use it, you will lose it (so to speak). I don't plan on losing my ability to walk or move if I have a chance on keeping it from happening. There's too much in life that I want to enjoy yet. I am not dead, I am disabled and slow-moving. If I stay steady and pace myself, take frequent breaks and stick to what I believe in, and keep hope that I will not get worse and may possibly get to play with my grandchildren when it comes time for my kids to have kids of their own, it will make my life worthwhile whether it's painful and miserable at times or not! Remember that this is what *I* believe and what has worked for *ME*, NOT what I think everyone *HAS* to do! But absolutely do one thing, not for me but for yourselves! NEVER LOSE HOPE AND NEVER GIVE UP! IT'S BEEN PROVEN THAT MIRACLES DO HAPPEN EVERY DAY AND SOME DAY IT WILL BE OUR TURNS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOVE AND GOD BLESS YOU ALL AND MAY EACH AND EVERY ONE OF YOU FOLLOW THE RIGHT PATH FOR YOU!!!!!!!!!!! Cheryl P.S. Whoever can find a copy of the " Letter to Normals " , send me a copy. And anyone who would like to chat, get advise, or talk to someone who is still hopeful despite all that life has thrown, can e-mail me direct or add me to your friends list on yahoo! Instant Messanger as " myangelicblues " . Just send me a message and let give me several times that you will be on and I will make arrangements to log on at one of those times as soon as I can. I log on at least once a day, if not once in the a.m. and at some time in the p.m. (especially if my better-half is watching a football game, Ha Ha). --------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 Hi everyone, this is Vonn. I would like a copy of the Letter to Normals, also. My Email addrs is BeatricePS1@.... Peace and Blessings Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 whoops! Thia goes with the Letter to Normals...thought I copied it with it...sorry! Mare This letter was modified (with permission) and published by a Payne in 1996 to become the " Letter to Normals " . Since then it has been printed in various publications (with and without permission). Due to this fact, I would like to state that This " Letter to Normals " be used to help other people with FM/MPS as long as proper credit is given to a Payne and to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS.) for creating it. > Having FMS/MPS means many things change, and a lot of them are > invisible. Unlike having cancer or being hurt in an accident, most > people do not understand even a little about FMS/MPS and its effects, > and of those that think they know, many are actually misinformed. > > In the spirit of informing those who wish to understand ... > > ... These are the things that I would like you to understand about me > before you judge me... > > > > > - Please understand that being sick doesn't mean I'm not still a > human being. I have to spend most of my day in considerable pain and > exhaustion, and if you visit I probably don't seem like much fun to > be with, but I'm still me stuck inside this body. I still worry about > school and work and my family and friends, and most of the time I'd > still like to hear you talk about yours too. > > > > > - Please understand the difference between " happy " and " healthy " . > When you've got the flu you probably feel miserable with it, but I've > been sick for years. I can't be miserable all the time, in fact I > work hard at not being miserable. So if you're talking to me and I > sound happy, it means I'm happy. That's all. It doesn't mean that I'm > not in a lot of pain, or extremely tired, or that I'm getting better, > or any of those things. Please, don't say, " Oh, you're sounding > better! " . I am not sounding better, I am sounding happy. If you want > to comment on that, you're welcome. > > > > > - Please understand that being able to stand up for ten minutes, > doesn't necessarily mean that I can stand up for twenty minutes, or > an hour. And, just because I managed to stand up for thirty minutes > yesterday doesn't mean that I can do the same today. With a lot of > diseases you're either paralyzed, or you can move. With this one it > gets more confusing. > > > > > - Please repeat the above paragraph > substituting, " sitting " , " walking " , " thinking " , " being sociable " and > so on ... it applies to everything. That's what FMS/MPS does to you. > > > > > - Please understand that FMS/MPS is variable. It's quite possible > (for me, it's common) that one day I am able to walk to the park and > back, while the next day I'll have trouble getting to the kitchen. > Please don't attack me when I'm ill by saying, " But you did it > before! " , if you want me to do something then ask if I can. In a > similar vein, I may need to cancel an invitation at the last minute, > if this happens please do not take it personally. > > > > > - Please understand that " getting out and doing things " does not make > me feel better, and can often make me seriously worse. Telling me > that I need a treadmill, or that I just need to loose (or gain) > weight, get this exercise machine, join this gym, try these > classes... may frustrate me to tears, and is not correct... if I was > capable of doing these things, don't you know that I would? I am > working with my doctor and physical therapist and am already doing > the exercise and diet that I am suppose to do. Another statement that > hurts is, " You just need to push yourself more, exercise harder... " > Obviously FMS/MPS deals directly with muscles, and because our > muscles don't repair themselves the way your muscles do, this does > far more damage than good and could result in recovery time in days > or weeks or months from a single activity. Also, FMS/MPS may cause > secondary depression (wouldn't you get depressed if you were hurting > and exhausted for years on end!?) but it is not created by > depression. > > > > > - Please understand that if I say I have to sit down/lie down/take > these pills now, that I do have to do it right now - it can't be put > off or forgotten just because I'm out for the day (or whatever). > FMS/MPS does not forgive. > > > > > - If you want to suggest a cure to me, don't. It's not because I > don't appreciate the thought, and it's not because I don't want to > get well. It's because I have had almost every single one of my > friends suggest one at one point or another. At first I tried them > all, but then I realized that I was using up so much energy trying > things that I was making myself sicker, not better. If there was > something that cured, or even helped, all people with FMS/MPS then > we'd know about it. This is not a drug-company conspiracy, there is > worldwide networking (both on and off the Internet) between people > with FMS/MPS, if something worked we would KNOW. > > > > > - If after reading that, you still want to suggest a cure, then do > it, but don't expect me to rush out and try it. I'll take what you > said and discuss it with my doctor. > > > > > In many ways I depend on you - people who are not sick - I need you > to visit me when I am too sick to go out... Sometimes I need you help > me with the shopping, cooking or cleaning. I may need you to take me > the the doctor, or to the physical therapist. I need you on a > different level too ... you're my link to the outside world... if you > don't come to visit me then I might not get to see you. > > ... and, as much as it's possible, I need you to understand me. > > > > =========================================== > I hope it is ok to post this...so many people have requested it, and > it sure did help me with a lot of people in understanding how i > may...and sometimes may not...work > Mare Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 2002 Report Share Posted August 30, 2002 whoops! Thia goes with the Letter to Normals...thought I copied it with it...sorry! Mare This letter was modified (with permission) and published by a Payne in 1996 to become the " Letter to Normals " . Since then it has been printed in various publications (with and without permission). Due to this fact, I would like to state that This " Letter to Normals " be used to help other people with FM/MPS as long as proper credit is given to a Payne and to Bek Oberin (Bek wrote the Open Letter To Those Without CFIDS.) for creating it. > Having FMS/MPS means many things change, and a lot of them are > invisible. Unlike having cancer or being hurt in an accident, most > people do not understand even a little about FMS/MPS and its effects, > and of those that think they know, many are actually misinformed. > > In the spirit of informing those who wish to understand ... > > ... These are the things that I would like you to understand about me > before you judge me... > > > > > - Please understand that being sick doesn't mean I'm not still a > human being. I have to spend most of my day in considerable pain and > exhaustion, and if you visit I probably don't seem like much fun to > be with, but I'm still me stuck inside this body. I still worry about > school and work and my family and friends, and most of the time I'd > still like to hear you talk about yours too. > > > > > - Please understand the difference between " happy " and " healthy " . > When you've got the flu you probably feel miserable with it, but I've > been sick for years. I can't be miserable all the time, in fact I > work hard at not being miserable. So if you're talking to me and I > sound happy, it means I'm happy. That's all. It doesn't mean that I'm > not in a lot of pain, or extremely tired, or that I'm getting better, > or any of those things. Please, don't say, " Oh, you're sounding > better! " . I am not sounding better, I am sounding happy. If you want > to comment on that, you're welcome. > > > > > - Please understand that being able to stand up for ten minutes, > doesn't necessarily mean that I can stand up for twenty minutes, or > an hour. And, just because I managed to stand up for thirty minutes > yesterday doesn't mean that I can do the same today. With a lot of > diseases you're either paralyzed, or you can move. With this one it > gets more confusing. > > > > > - Please repeat the above paragraph > substituting, " sitting " , " walking " , " thinking " , " being sociable " and > so on ... it applies to everything. That's what FMS/MPS does to you. > > > > > - Please understand that FMS/MPS is variable. It's quite possible > (for me, it's common) that one day I am able to walk to the park and > back, while the next day I'll have trouble getting to the kitchen. > Please don't attack me when I'm ill by saying, " But you did it > before! " , if you want me to do something then ask if I can. In a > similar vein, I may need to cancel an invitation at the last minute, > if this happens please do not take it personally. > > > > > - Please understand that " getting out and doing things " does not make > me feel better, and can often make me seriously worse. Telling me > that I need a treadmill, or that I just need to loose (or gain) > weight, get this exercise machine, join this gym, try these > classes... may frustrate me to tears, and is not correct... if I was > capable of doing these things, don't you know that I would? I am > working with my doctor and physical therapist and am already doing > the exercise and diet that I am suppose to do. Another statement that > hurts is, " You just need to push yourself more, exercise harder... " > Obviously FMS/MPS deals directly with muscles, and because our > muscles don't repair themselves the way your muscles do, this does > far more damage than good and could result in recovery time in days > or weeks or months from a single activity. Also, FMS/MPS may cause > secondary depression (wouldn't you get depressed if you were hurting > and exhausted for years on end!?) but it is not created by > depression. > > > > > - Please understand that if I say I have to sit down/lie down/take > these pills now, that I do have to do it right now - it can't be put > off or forgotten just because I'm out for the day (or whatever). > FMS/MPS does not forgive. > > > > > - If you want to suggest a cure to me, don't. It's not because I > don't appreciate the thought, and it's not because I don't want to > get well. It's because I have had almost every single one of my > friends suggest one at one point or another. At first I tried them > all, but then I realized that I was using up so much energy trying > things that I was making myself sicker, not better. If there was > something that cured, or even helped, all people with FMS/MPS then > we'd know about it. This is not a drug-company conspiracy, there is > worldwide networking (both on and off the Internet) between people > with FMS/MPS, if something worked we would KNOW. > > > > > - If after reading that, you still want to suggest a cure, then do > it, but don't expect me to rush out and try it. I'll take what you > said and discuss it with my doctor. > > > > > In many ways I depend on you - people who are not sick - I need you > to visit me when I am too sick to go out... Sometimes I need you help > me with the shopping, cooking or cleaning. I may need you to take me > the the doctor, or to the physical therapist. I need you on a > different level too ... you're my link to the outside world... if you > don't come to visit me then I might not get to see you. > > ... and, as much as it's possible, I need you to understand me. > > > > =========================================== > I hope it is ok to post this...so many people have requested it, and > it sure did help me with a lot of people in understanding how i > may...and sometimes may not...work > Mare Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 Thank you for this. It says just what I'm always trying to say but can't sometimes through the tears. thank you Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.