Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 I think that is pretty common with our diseases. When I got home from being dx and was pretty much house bound I went though that. I had 2 " good buddies " gals I went to lunch with and to painting class. One called me when she could....her husband has just had a heart attack and she was involved with him. The other, who only lived around the corner from me acted as if I didn't exist. She did come over 1 time in the year I was there and that was because I called her and didn't leave her any slack to get out of it. I find now that if I don't hear from a friend that has previously been on a regular basis my mind starts telling me it's because I'm too much trouble to do things with. Really have to fight that feeling!!! Teddi mailto:teddifromok@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Hi, . Sorry to hear you're feeling lonely and that your friends and family have deserted you. Please know we're always here for you whenever you need to vent or just share something special in your life. (((hugs))) Dawn j5522us wrote: > Venita, loved what you said about people caring. It gives me hope > that there are still people out there who do! I say that because I've > been feeling totally rejected lately- not one person from my church > or choir friends has called me in months, my best friend rarely > inquires about my health, or how I'm doing. She emails infrequently > these days. My own sister has stopped emailing me for some reason I > can't fathom, even though I'm writing her. She used to email every > day, pretty much. Knowing the way her mind works, perhaps I said > something that she twisted around in her mind somehow, and has become > angry with me. No idea! I feel completely friendless, except for > those on this list and a couple of email pals. It's not the same > thing, truly. It's pretty easy to be email friends, but the true test > is how those nearer you act. Perhaps it's me, and people simply don't > like me I admit to isolating myself the last few months, since end > of January in particular, due to awful fatigue and stuff, but geez, > can't someone even CALL me? I also haven't been much " fun " . I'd give > anything to have someone come help me plant a few flowers or > something, and even mentioned that to my sister and best friend, but > I got no response whatsoever. A few weeks ago I contacted a church > choir buddy by email, through her husband. He briefly replied to me, > telling me he passed on the message. She has never contacted me. All > I had said was that I was simply saying " hi " and what's up, etc. I am > ready to give up, and probably feeling very sorry for myself. I > imagine it's me that needs to change, or do something different. As > I've mentioned before here, long ago, when I was DX's with PM, no one > in my family was very concerned at all, and to this day, my own > father has never understood what myositis is, or what fibromyalgia is- > I've had comments in the past such as " get over it " or snap out of > it " , hang tough, etc. I know many of you have been through that, too. > The GOOD news is that yesterday and today, I feel pretty darn good! > Less fatigue, much less pain, and the only thing different I've been > doing is taking fish oil capsules daily for the past week!!! thanks > to Connie's post. Hey, ya never know! I'm grateful for that and all > the info I've gotten here and elsewhere over the past 2 years Very > grateful. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 I am so sorry your friends and family are not giving you the attention that you need right now. Just know that if you're lonely you can always talk to us. I know it is not the same as talking to a " real person " but it takes the edge off. And you know that whatever you are going through we can relate and help you through it. I do have some family members that I've hardly spoken to since my dx but I don't concern myself to much with them. I don't have the energy. I think the best thing I did for my family was to research the disease and print the information for them to have so they would know what I was dealing with. Have you been able to attend church? If so, have you spoken to your pastor about your illness and possibly having someone visit with you on a regular basis? It does make a big difference when you know someone cares. We care and we wish the best for you. You will be in my prayers, Venita. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 Judge ~~ You'll ALWAYS have a home and friends here with us!! ALWAYS! Ed > > > Venita, loved what you said about people caring. It gives me hope > > that there are still people out there who do! I say that because I've > > been feeling totally rejected lately- not one person from my church > > or choir friends has called me in months, my best friend rarely > > inquires about my health, or how I'm doing. She emails infrequently > > these days. My own sister has stopped emailing me for some reason I > > can't fathom, even though I'm writing her. She used to email every > > day, pretty much. Knowing the way her mind works, perhaps I said > > something that she twisted around in her mind somehow, and has become > > angry with me. No idea! I feel completely friendless, except for > > those on this list and a couple of email pals. It's not the same > > thing, truly. It's pretty easy to be email friends, but the true test > > is how those nearer you act. Perhaps it's me, and people simply don't > > like me I admit to isolating myself the last few months, since end > > of January in particular, due to awful fatigue and stuff, but geez, > > can't someone even CALL me? I also haven't been much " fun " . I'd give > > anything to have someone come help me plant a few flowers or > > something, and even mentioned that to my sister and best friend, but > > I got no response whatsoever. A few weeks ago I contacted a church > > choir buddy by email, through her husband. He briefly replied to me, > > telling me he passed on the message. She has never contacted me. All > > I had said was that I was simply saying " hi " and what's up, etc. I am > > ready to give up, and probably feeling very sorry for myself. I > > imagine it's me that needs to change, or do something different. As > > I've mentioned before here, long ago, when I was DX's with PM, no one > > in my family was very concerned at all, and to this day, my own > > father has never understood what myositis is, or what fibromyalgia is- > > I've had comments in the past such as " get over it " or snap out of > > it " , hang tough, etc. I know many of you have been through that, too. > > The GOOD news is that yesterday and today, I feel pretty darn good! > > Less fatigue, much less pain, and the only thing different I've been > > doing is taking fish oil capsules daily for the past week!!! thanks > > to Connie's post. Hey, ya never know! I'm grateful for that and all > > the info I've gotten here and elsewhere over the past 2 years Very > > grateful. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2002 Report Share Posted April 30, 2002 , It is definitely not you, it is them that have the problem. Because myositis is not a plaster cast or something more obviously visible, people often jump to the wrong conclusion that it is some sort of neurosis. My dad, too, doesn't really " get " it and keeps asking me when I'll be my old self again. As for my brother, I haven't seen him in two years even though he only lives 45 mins away. When we were kids we were really close but unfortunately his wife is " mean, " and doesn't like any of his family or friends! I feel he has turned into a wimp, but feel it would not hurt him to just phone me at least. All I've had is a Christmas card signed by him. Dad says he asks about me all the time. Yeah, right! I feel sorry for Dad as he naturally wants all of his kids to be close. Thank goodness my sister is very supportive, she is a blessing. Sorry, got off the track! Maybe we all have a similar story to tell with people's reactions, it is just another symptom of this disease. Some friends now talk to me like I am a cripple or 5 years old because the pred has made me look different. It seems to scare them. Great news about the scholarship for your son. At least you won't have to sell one of your kidney's this week! With lots of love, Lesley > >Reply-To: OurMyositis >To: OurMyositis >Subject: being grateful >Date: Tue, 30 Apr 2002 18:27:35 -0000 > > Venita, loved what you said about people caring. It gives me hope >that there are still people out there who do! I say that because I've >been feeling totally rejected lately- not one person from my church >or choir friends has called me in months, my best friend rarely >inquires about my health, or how I'm doing. She emails infrequently >these days. My own sister has stopped emailing me for some reason I >can't fathom, even though I'm writing her. She used to email every >day, pretty much. Knowing the way her mind works, perhaps I said >something that she twisted around in her mind somehow, and has become >angry with me. No idea! I feel completely friendless, except for >those on this list and a couple of email pals. It's not the same >thing, truly. It's pretty easy to be email friends, but the true test >is how those nearer you act. Perhaps it's me, and people simply don't >like me I admit to isolating myself the last few months, since end >of January in particular, due to awful fatigue and stuff, but geez, >can't someone even CALL me? I also haven't been much " fun " . I'd give >anything to have someone come help me plant a few flowers or >something, and even mentioned that to my sister and best friend, but >I got no response whatsoever. A few weeks ago I contacted a church >choir buddy by email, through her husband. He briefly replied to me, >telling me he passed on the message. She has never contacted me. All >I had said was that I was simply saying " hi " and what's up, etc. I am >ready to give up, and probably feeling very sorry for myself. I >imagine it's me that needs to change, or do something different. As >I've mentioned before here, long ago, when I was DX's with PM, no one >in my family was very concerned at all, and to this day, my own >father has never understood what myositis is, or what fibromyalgia is- > I've had comments in the past such as " get over it " or snap out of >it " , hang tough, etc. I know many of you have been through that, too. > The GOOD news is that yesterday and today, I feel pretty darn good! >Less fatigue, much less pain, and the only thing different I've been >doing is taking fish oil capsules daily for the past week!!! thanks >to Connie's post. Hey, ya never know! I'm grateful for that and all >the info I've gotten here and elsewhere over the past 2 years Very >grateful. > _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 ... Would you consider calling your sister or your best friend and telling them how you feel and that you need their support? Sometimes opening up and being entirely honest will open their eyes. Annette being grateful Venita, loved what you said about people caring. It gives me hope that there are still people out there who do! I say that because I've been feeling totally rejected lately- not one person from my church or choir friends has called me in months, my best friend rarely inquires about my health, or how I'm doing. She emails infrequently these days. My own sister has stopped emailing me for some reason I can't fathom, even though I'm writing her. She used to email every day, pretty much. Knowing the way her mind works, perhaps I said something that she twisted around in her mind somehow, and has become angry with me. No idea! I feel completely friendless, except for those on this list and a couple of email pals. It's not the same thing, truly. It's pretty easy to be email friends, but the true test is how those nearer you act. Perhaps it's me, and people simply don't like me I admit to isolating myself the last few months, since end of January in particular, due to awful fatigue and stuff, but geez, can't someone even CALL me? I also haven't been much " fun " . I'd give anything to have someone come help me plant a few flowers or something, and even mentioned that to my sister and best friend, but I got no response whatsoever. A few weeks ago I contacted a church choir buddy by email, through her husband. He briefly replied to me, telling me he passed on the message. She has never contacted me. All I had said was that I was simply saying " hi " and what's up, etc. I am ready to give up, and probably feeling very sorry for myself. I imagine it's me that needs to change, or do something different. As I've mentioned before here, long ago, when I was DX's with PM, no one in my family was very concerned at all, and to this day, my own father has never understood what myositis is, or what fibromyalgia is- I've had comments in the past such as " get over it " or snap out of it " , hang tough, etc. I know many of you have been through that, too. The GOOD news is that yesterday and today, I feel pretty darn good! Less fatigue, much less pain, and the only thing different I've been doing is taking fish oil capsules daily for the past week!!! thanks to Connie's post. Hey, ya never know! I'm grateful for that and all the info I've gotten here and elsewhere over the past 2 years Very grateful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 --- , I read Annette message and it reminded me of what I had to do with my sister. My sister is 11 years younger than I and I have been kind of like a second mother as well as best friend to her. She has always had a hard time dealing with difficult situations. When our mom was sick and eventually died she pretty much went AWOL. When I was first diagnosed, she would call me occasionally but she wouldn't come to see me. I finally called her and I told her that no matter how difficult it was for her, she was not going to abandon me. I told her that I needed and expected her support. Slowly but surely, she would call to let me know that she would be stopping by and if I needed anything. She volunteered to take me to Dr.'s appts. as there was a time I couln't drive. Now we see one another at least twice a week and talk practically everyday. She still has problems with seeing her older sister in such a state, but with lots of prayer and soul searching she is working her way through it. I hope that your friend and sister will come around for you. Venita In OurMyositis@y..., " Annette Flamand " <annflam@e...> wrote: > ... Would you consider calling your sister or your best friend and > telling them how you feel and that you need their support? Sometimes > opening up and being entirely honest will open their eyes. Annette > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 Hi . Bad spells may be a part of life, but they sure ain't pleasant when you are in one of them. And from what you wrote it seems to me that you have been in one for a bit. Good news -- I think you are just about out of it. You'll see why later. We on this list do appreciate you very much. The comments and observations you make, and the suggestions about where to search for information are really appreciated, by myself at least. To know that someone reads what you wrote, thinks about what you wrote, and then responds and tries to help -- well, somehow it makes you feel better inside. And I suppose that to write someone several times and not get any response can make you feel the other way. Especially so when you are afraid that maybe you are heading towards relapses or other physical troubles, and want a bit of comforting. It seems that your physical worries are easing a bit, and that scholarship news was just what you needed, too. These are wonderful pieces of news. But of course if you aren't hurting as much, you are able to think about other things, including the fact that your sister and friends aren't replying very often to your emails. Can I make one little suggestion? This is founded on my own family experiences, which include a brother whose telephone doesn't have any buttons on it. At least, it seems to me that he can't make outgoing calls, because I am the one who always phones him. But I do call him. Emailing is maybe even better than phoning, because it can force you to set out clearly what you think. You may not get the bonding you feel by being close or by listening to someone's voice. You probably don't end up with the same feeling of reassurance that yes, the other person understands and feels with you. But you keep the contact maintained. And it shows you care. So keep on emailing your sister. If she has a problem with you -- well, look again at what I just wrote. SHE has the problem, not you. She'll get over it in time. And you may be Judge , but there is no need to enforce a law like the capricious " three strikes and you're out " one, especially where your church friends are concerned. Instead of adding them to your list of people you never want to deal with again, why not send me their email addresses? I'll write and ask them to make me some cookies -- after all, they do bake sales, don't they? Now that's a real way to get even. It's what Vicki asked me to do to you, you know (By the way, I suppose a second choice could be to keep on calling and emailing them...). Keep comfortable (and too bad about the Islanders). Mike B - In OurMyositis@y..., " j5522us " <gide672@a...> wrote: > Venita, loved what you said about people caring. It gives me hope > that there are still people out there who do! I say that because I've > been feeling totally rejected lately- not one person from my church > or choir friends has called me in months, my best friend rarely > inquires about my health, or how I'm doing. She emails infrequently > these days. My own sister has stopped emailing me for some reason I > can't fathom, even though I'm writing her. She used to email every > day, pretty much. Knowing the way her mind works, perhaps I said > something that she twisted around in her mind somehow, and has become > angry with me. No idea! I feel completely friendless, except for > those on this list and a couple of email pals. It's not the same > thing, truly. It's pretty easy to be email friends, but the true test > is how those nearer you act. Perhaps it's me, and people simply don't > like me I admit to isolating myself the last few months, since end > of January in particular, due to awful fatigue and stuff, but geez, > can't someone even CALL me? I also haven't been much " fun " . I'd give > anything to have someone come help me plant a few flowers or > something, and even mentioned that to my sister and best friend, but > I got no response whatsoever. A few weeks ago I contacted a church > choir buddy by email, through her husband. He briefly replied to me, > telling me he passed on the message. She has never contacted me. All > I had said was that I was simply saying " hi " and what's up, etc. I am > ready to give up, and probably feeling very sorry for myself. I > imagine it's me that needs to change, or do something different. As > I've mentioned before here, long ago, when I was DX's with PM, no one > in my family was very concerned at all, and to this day, my own > father has never understood what myositis is, or what fibromyalgia is- > I've had comments in the past such as " get over it " or snap out of > it " , hang tough, etc. I know many of you have been through that, too. > The GOOD news is that yesterday and today, I feel pretty darn good! > Less fatigue, much less pain, and the only thing different I've been > doing is taking fish oil capsules daily for the past week!!! thanks > to Connie's post. Hey, ya never know! I'm grateful for that and all > the info I've gotten here and elsewhere over the past 2 years Very > grateful. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2002 Report Share Posted May 1, 2002 NOT!!!!! I'm sorry to disagree, but we're huge Maple Leaf fans in my household and were extremely pleased they beat out the Islanders. Other than that, I whole-heartedly (sp?) agree with your email, Mike. ) Dawn PS.....Sorry, couldn't resist. LOL. mjboyce25ca wrote: > Hi . > > Bad spells may be a part of life, but they sure ain't pleasant when > you are in one of them. And from what you wrote it seems to me that > you have been in one for a bit. Good news -- I think you are just > about out of it. You'll see why later. > > We on this list do appreciate you very much. The comments and > observations you make, and the suggestions about where to search for > information are really appreciated, by myself at least. To know that > someone reads what you wrote, thinks about what you wrote, and then > responds and tries to help -- well, somehow it makes you feel better > inside. > > And I suppose that to write someone several times and not get any > response can make you feel the other way. Especially so when you are > afraid that maybe you are heading towards relapses or other physical > troubles, and want a bit of comforting. > > It seems that your physical worries are easing a bit, and that > scholarship news was just what you needed, too. These are wonderful > pieces of news. But of course if you aren't hurting as much, you are > able to think about other things, including the fact that your sister > and friends aren't replying very often to your emails. > > Can I make one little suggestion? This is founded on my own family > experiences, which include a brother whose telephone doesn't have any > buttons on it. At least, it seems to me that he can't make outgoing > calls, because I am the one who always phones him. But I do call him. > > Emailing is maybe even better than phoning, because it can force you > to set out clearly what you think. You may not get the bonding you > feel by being close or by listening to someone's voice. You probably > don't end up with the same feeling of reassurance that yes, the other > person understands and feels with you. But you keep the contact > maintained. And it shows you care. > > So keep on emailing your sister. If she has a problem with you -- > well, look again at what I just wrote. SHE has the problem, not you. > She'll get over it in time. > > And you may be Judge , but there is no need to enforce a law > like the capricious " three strikes and you're out " one, especially > where your church friends are concerned. Instead of adding them to > your list of people you never want to deal with again, why not send > me their email addresses? I'll write and ask them to make me some > cookies -- after all, they do bake sales, don't they? Now that's a > real way to get even. It's what Vicki asked me to do to you, you know > (By the way, I suppose a second choice could be to keep on calling > and emailing them...). > > Keep comfortable (and too bad about the Islanders). > > Mike B > > - In OurMyositis@y..., " j5522us " <gide672@a...> wrote: > > Venita, loved what you said about people caring. It gives me hope > > that there are still people out there who do! I say that because > I've > > been feeling totally rejected lately- not one person from my church > > or choir friends has called me in months, my best friend rarely > > inquires about my health, or how I'm doing. She emails infrequently > > these days. My own sister has stopped emailing me for some reason I > > can't fathom, even though I'm writing her. She used to email every > > day, pretty much. Knowing the way her mind works, perhaps I said > > something that she twisted around in her mind somehow, and has > become > > angry with me. No idea! I feel completely friendless, except for > > those on this list and a couple of email pals. It's not the same > > thing, truly. It's pretty easy to be email friends, but the true > test > > is how those nearer you act. Perhaps it's me, and people simply > don't > > like me I admit to isolating myself the last few months, since > end > > of January in particular, due to awful fatigue and stuff, but geez, > > can't someone even CALL me? I also haven't been much " fun " . I'd > give > > anything to have someone come help me plant a few flowers or > > something, and even mentioned that to my sister and best friend, > but > > I got no response whatsoever. A few weeks ago I contacted a church > > choir buddy by email, through her husband. He briefly replied to > me, > > telling me he passed on the message. She has never contacted me. > All > > I had said was that I was simply saying " hi " and what's up, etc. I > am > > ready to give up, and probably feeling very sorry for myself. I > > imagine it's me that needs to change, or do something different. As > > I've mentioned before here, long ago, when I was DX's with PM, no > one > > in my family was very concerned at all, and to this day, my own > > father has never understood what myositis is, or what fibromyalgia > is- > > I've had comments in the past such as " get over it " or snap out > of > > it " , hang tough, etc. I know many of you have been through that, > too. > > The GOOD news is that yesterday and today, I feel pretty darn > good! > > Less fatigue, much less pain, and the only thing different I've > been > > doing is taking fish oil capsules daily for the past week!!! thanks > > to Connie's post. Hey, ya never know! I'm grateful for that and all > > the info I've gotten here and elsewhere over the past 2 years > Very > > grateful. > > > > > Quote Link to comment Share on other sites More sharing options...
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