# does your illness mak you feel lonely?



## Clair (Sep 16, 2000)

I'm just wondering how many people feel that their illness isolates them and makes them feel lonely?I for one, feel that because of my cognitive dysfunction (poor memory, lack of concentration and auditory problems) its difficult to make friends - I mean who wants to be friends with someone who doesnt understand a word you say, cant remember amusing stories/anecdotes or jokes and is generally scatty?On a number of occasions I have found people thuoght i was purposefully ignoring them/snubbing them or being mean because I didn't see them in the street, didnt hear what they said or looked at them blankly.Anyone else have this experience?


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## M&M (Jan 20, 2002)

Excellent topic Clair. I don't think we've ever discussed this before.I am fortunate enough to have a lot of friends, a lot of people that genuinely care about me, and that I genuinely care about. Even some that also have chronic health problems who can sort of understand the world of chronic ills. One thing I have learned though, is that it doesn't matter how many people you have (or don't have) in your life, you can still feel lonely and isolated. I get the lonely isolated feeling when I'm in a really bad flare for a really long time. Where I can't get out of bed, let alone out of the house. I think for me, it's a feeling of having to fight the symptoms on my own, with noone really knowing what it's like inside my body, or having to fight the same symptoms I do. Then, when the flare is over, and I'm back to the land of the living, the feeling of lonely isolation disapates, until the next round. (During flares I picture myself a valiant knight of Camelot, trying to ward off a fire breathing dragon before it enters the city walls and kills all the helpless citizens and peasants - and of course I'm the only knight around, and the dragon is much bigger than me - the dragon of course representing the illness. Then finally when my flare gets a little better, the dragon shrinks, until finally it's gone)I'm looking forward to reading other responses!


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## Stillnaked (Jan 19, 2003)

I really do feel lonely in dealing with this. No one around me understands what it is like to live with pain EVERY minute of the day. They just don't get it. I can't go any where alone anymore, or drive. Now it is not only isolating me, but my two 13 year old, that I Homeschool. We aren't very active any more, and have all put on some wieght. I hear from people all the time that I need to get out more. Wandering around the city, in pain, lost and scaring my kids just doesn't sound good to me. I am sure glad I have this board, and all of you, or I would have snapped by now!Laurie


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## Susan Purry (Nov 6, 2001)

I think for me, I don't get lonely as such, but I do feel isolated by the ME/CFS. Going out to see friends, going to the pub or restaurants or parties are impossible right now. Now I can use the phone I don't feel so isolated; I use the phone and email to get over that. And friends travelling down to visit is great, although a bit tricky because most of them live several hours a way and I can only have them over for an hour or so before I get too shattered. So, isolated rather than lonely, I think for me.


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## Guest (Aug 8, 2003)

I'm too busy to be lonely, and I am definitely not isolated, but in the last year I've noticed that brain fog is getting progessively worse and I have difficulty understanding anything more deep than a 2-dimensional concept...







One thing that I DO notice is that sometimes a couple of the analysts with whom I work appear to become annoyed with me when I ask them to repeat things to me because I didn't understand them the first time.To be honest, I'm getting a little scared about this because in a few years when we change clinical systems at work, I have concerns as to whether or not I'll be able to keep up. I am considering working on a way to work from home doing transcription for the hospital when that time arrives.I also notice that my short-term memory is getting very very bad. I can walk from one room to the other and totally forget what I am doing. My husband jokes about it but it's making me very uncomfortable.There are times when I am just so tired and in so much pain that I don't want to talk. I often leave work without saying goodnight to anyone, and they think I'm a snob but it's just because I am so exhausted and want to get home as quickly as I can so that I can take a nap.Ironically, the brain fog doesn't seem to affect my artistic side, however.Evie


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## celticlady (Aug 6, 2001)

Yes,my illness makes me feel lonely a lot.I am also dealing with the loss of an almost 14 year marriage.....so i am a single mom.....(or will be soon in next few weeks when divorce HOPEFULLY goes thru....husband has been fighting me all the way,this is really affecting my illness,I have been bedridden for days,except up for maybe 30 minutes here and there to surf ,etc))I like Mrs Masons "dragon and knight" idea!!!Having all you wonderful people to "chat" to makes me feel a lot better  Celtic


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## Guest (Aug 10, 2003)

Just wanted to slip in here and say Hi to you, Celtic... I've missed you here, as have many others...... glad you're back... and glad you enjoy the support on this bb as much as I and everyone else does. You're a brave lady who is handling things with total grace. I don't know if I would be as successful.Hugs,  Evie


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## celticlady (Aug 6, 2001)

Awww.......Evie-thats so nice of you!I too have missed all the board members.I am not that brave,really.....I am just plugging away thru a really tough time......but I am alive,and my son is healthy and (relatively) happy,so I feel blessed.The good thing is that I have gotten back to my relationship with God.Without faith,I would have left this planet a long time ago.Update for those who are interested-hopefully divorce will be DONE in 2-3 weeks.(husband keeps draging it out,and his lawyer is a witch with a b instead of a w)Got approved for refinancing of my house,will just barely be able to afford keeping it, but it will be mine "free and clear".I am basically offering my soon-to-be-ex(stbe)a bunch of money to MAKE HIM GO AWAY(that doesnt sound very nice,does it?)Now that he is not living here,I am so much more relaxed,and the pain in my neck is much improved!!!!(kind of interesting,get rid of the "pain in the neck" ie "stbe" and my physical symptoms are improving!)It is still very hard,as I do truly love him,but love is not enough. COMMITMENT AND HARD WORK were the 2 things he would not do......I should have filed years ago.He is a "fair weather" husband-cant handle it and is MEAN(non-caring and verbally and emotionally abusive) to me when I am sick.This is why I had to file for divorce after 13(almost 14) years.I am in deep grief re the loss of our hopes and dreams.There must be SOME nice men out there?But right now I am just working on ME.BTW I just about fell off my chair laughing when we were doing the flipper story,when you mentioned"would you eat crappies in bed?"BWA HA HA HA HA HA HA!take care,Evie,Mrs M, Feisty,and all of you with fibro/CFS.


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## Guest (Aug 10, 2003)

Oh.... so you think it would be ok for Lucia & Flipper to munch on their buddies in bed then huh?







I couldn't help that one, I just pulled it out of the water...







Sounds like you are continuing to do a terrific job of managing all that's been dumped on your plate. Thanks for the update, Celtic.And I continue to applaud you and wish you well,  Evie


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## Feisty (Aug 14, 2000)

Hi CelticLady







I was wondering how you've been doing. Darn it! I was so hoping that divorce was over with already. Here---give this to you stbe







Hang in there, girl.


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## Mountain Gal (Aug 9, 2003)

I went through a long period of isolation because I was too sick and tired to make an effort to go or do anything. I would take one day a week to do something and then it would take the rest of the week to get over it. I am doing so much better now. I am very active. We have moved to a new town since my husband retired and my boys are grown and off to college. We love it here and I have become very active in church and have made lots of new friends. Since it is a rural area and a little town and not lots of traffic, I feel I can drive around here much better. I came from a very large city and I seldom drove because the traffic was so bad. I would get brain fog and could not decide which lane I needed to be in, or where I needed to go. Now I can pretty much take my time and I have actually started enjoying driving again since there is no pressure on me. My husband is very, very understanding of my health issues. He buys all the groceries and he will also run many errands for us so I dont have to do it. Some people do have terrible brain fog with Fibro. My sister actually had to retire from her job because she felt she could no longer do the work. She could not concentrate and would get confused. She was only 54 when she retired. My boys tease me. We will have phone conversations and one of them will say, "Listen up, Mother, let me tell you again...you are Fibro-fogging today." LOL


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