Posted by: Anna Fuzie ®
06/20/2003, 11:59:46
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Hi June,
Thank you for the nice comments from you when I post. I really appreciate it. When this happened to me last year I didn't want to go out of the house... as it grew worse... the more I stayed in and then finally went off work. Before that I worked full time as a Nurse Manager for a busy emergency room (still do) had two part time jobs and had a little side business for consulting and did a lot of teaching for the hospital that I work. The worst and most embarassing experience I had was a day I was at the hospital teaching a 6 hour class and had a room full of physician assistant students and about 20 doctors that I work with on a daily basis... my face began twitching and my eyes shutting about 4 hours into the class and I could not continue to teach so fortunately my assistant was there and able to take over the class. I had to explain (almostlike a testimony) what was going on and that was so hard because it was really the first time that I realized I may not be able to go back to the things I loved doing. Out some 45 people in there...only one doctor knew what it was because she had a child in her practice that had it. After that I stayed home and didn't go anywhere and when I did finally go back to work I hid alot in my office and that was so unlike me. The staff that I work with were all so wonderful and they really pulled me out and wouldn't allow me to hide in my office. They were so used to me being visible on the units they just weren't going to accept me being back in my office. I think knowing that they and my friends and family cared so much was so helpful. I am divorced but have 3 children and it was very difficult for them. Especially my now 15 year old. She was very worried about me and still is. I know when I drive...she watches my eyes to make sure they are wide open even though I don't have any problems anymore...she was with me a few times with close calls and it scared her and me. I finally at one point had to stop driving. (took a fender bender for me to realize that and one day at work my eyes were so bad my boss wouldn't let me drive home...transportation took me home)... I live an hour from where I work.
I found myself last year completely shut in and didn't care. We go to the beach for a week every July and last July my 18 year old drove us down and I stayed inside the whole time except to go to the market and one day when my girlfriend came down and made me go to the mall with her. I do understand how you feel and how tiring this affliction is both emotionally and physically.
Excuse the long rambling letter but thank you for listening.
I hope for you that things improve.
You are in my thoughts.
Anna in southern California desert
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Posted by: Shirley-Arkansas-USA ®
06/20/2003, 22:05:02
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I'm definitely out of the loop. I'm comfortable around my family and at home and not many other places. I do go to dog obedience classes and so far have not had a lot of problem while there for the hour. I do have some problems intermittantly but everybody is watching or working with their dogs so I don't think that it is very noticable. I haven't explained anything to anybody. I just look down and work with Maggie.
My oldest son is renting a condo now with a couple of other guys. He's three hours away. Hubby and I went to see him a couple of weeks ago and spent the afternoon with him and his friends. His friends know about my problem and love me anyway. Heck, they even call me mom. Anyway, they were all talking as we sat in the living room and my eyes were sooooo bad. Could not keep them open. Kept trying to get them to open and would wind up missing the conversation because I was concentrating on opening my eyes. So, I can either just close my eyes and relax and listen or I can miss out on 3/4 to all of the conversation while struggling to get my eyes to open. I tried not to let it bother me but it really was an uncomfortable situation and would have been far worse if it hadn't been my son and his understanding friends. I will do it though because my kids are very important to me.Roy and I have never done much socializing so that hasn't really changed and it isn't missed on his part or mine. There are occasional things that I would have attended with him if I didn't have BEB. He generally asks me if I want to go but understands when I usually don't. I'm just glad that those things are too important to him or I would feel like I'm letting him down. The conferences are a fun outing for us that we both enjoy. I can actually be comfortable and relaxed and have a very good time at them.
Everybody understands as they are dealing with it too. We can even joke about it. But no, I don't visit with old friends and rarely attend things where I will have to be face to face with people and listen to conversations. The bb is very important to me as I feel very safe here and hope that others do to. I don't have to try to explain a problem that doesn't even make sense to me. Yep, I'm out of the Loop but it doesn't bother me too much. It bothers me more when I try to be in it. Shirley in Arkansas
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Posted by: rita ®
06/21/2003, 12:13:28
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Hi June
I am sorry you are feeling so dowm in the dumps...
You are the one I count on for such positives posts to me and other people on the Beb
I have been doing better lately and I don't know why..its still there I can feel it and still sensitive to light,and lots of blinking in the morning
I work with the public everyday and when my beb was so bad..the spasms and blinkng ..it was hard to do ,cause people do notice..I was at the dept of licensensing a while back and one of the officers said to me..do you have a problem with your eyes and I said I had a slight eye condition and she said can you even pass the eye exam and I said yes..anyway I passed it..
June ,I always look forward to your postings and you helped me a lot when I first started posting...I am saying a prayer for you now to have some peace of mind...You sound like such a nice person and very helpful.
Take care Rita
P.S. I have always felt that way in big groups of people, but due to my anxiety disorder...and you can't help the way you feel..
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Posted by: June in Toronto ®
06/21/2003, 15:54:34
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Thanks Ladies for sharing. I must have given the wrong impression Rita - I'm not completely `down in the dumps' - I was that way about 2 months ago but am now coming out of it. I'm just fed up defending myself and constantly explaining when I don't want to go out and socialize, especially among strangers. I have been on some anti-depression med. and felt in a black hole every morning lately (just like a bear with a sore head). I decided to stop taking the nightime med. and felt so much brighter this am. I do react quite strongly to medication. I know we have to accept our limitations with this disease/disorder but I guess I just don't accept it as gracefully as I should! I'll keep trying and say prayers for us all.June in Toronto
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Posted by: Ann Doyle ®
06/21/2003, 16:49:50
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June. Maybe it's not the Bleph but changing your values. I'm into my 70's and have had Bleph/ Meige for 5 years. I've always been an extremely social person, class president and that sort of thing.
I married in the 50's and I don't know how old you are but I was busy raising children and changed my values. Tuppberware was popular then and people would have "parties". Someone from tupperware would tell you how good it was and you'd play a few games and have cake and coffee and then be expected to order some tupperware. I decided the parties were very boring. The next time someone asked me to go I just said 'No, I don't like Tupperware parties." They had no response and I didn't feel guilty about not going. They may have hurt feelings but if so , then they were out of line. I didn't say "I don't like you."
Since then I've learned to say "I've already made other plans " to anything I didn't want to go to. I'm notlying. My plans were to stay home and watch tv. or wash my hair and go to bed early.
If they were bold enough to ask what. I would ask, Why do you want to know? I found it helpful to answer a question with a question.
The point of this whole thing is maybe you are learning to make wiser choices. I know I would rather stay home and go for a walk that go to a party where I didn't know anyone.
I think Bleph helps us use our time more wisely. It tells us we don't have to do a lot of things that are boring or even dreadful or a waste of time.
Three Cheers for You Girl. You're getting smart, and wise and self-confinant and learning most of all not to be a people pleaser. I'm proud of you.
I went to a party this afternoon, A baby shower. Knew most of the people there, had a good time, wore dark glasse indoors with the shades down and didn't explain a thing. There was a woman there completely bald. I presume she had cancer. She didn't explain anything either and no one asked. Ann Doyle
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Posted by: June in Toronto ®
06/22/2003, 10:48:50
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Hi Ann, if you are correct about me "getting smart and wise and self-confident, etc." then its about time as I was 64 2 day's ago! I never was one to go along with the crowd though - hated Tupperware parties as well and makeup parties and all that sort of thing. In later years it became candle parties and, well, you know how most of us with beb HATE candles:-). I was a single parent of 2 children for many, many years, without any family support in Canada at all, and didn't have time or desire for such fripperies having to work 1+ jobs as well. I think its mainly with hubby and family I have the greatest difficulty saying no to a social function - and really they should be the ones to understand the most why I don't want to participate - but then they don't walk in my shoes right? I know they mean well and believe IT WILL DO ME GOOD, and I SHOULD GET OUT MORE - it usually doesn't help me though as I suffer from the extra pain and suffering (they don't suffer unless I'm `crabby' with it the next day:-). Yesterday I decided not to go to listen to hubby's band playing in a smokey pub (smoke gets in my eyes (isn't that a song?)), but went for lunch with an out-of-town friend at a lakefront cafe, then for a lovely long walk all by myself. I came home quite content. Thanks for the pep talk - we all need it once in a while. I'm going to continue my stand when necessary and not feel so guilty. I always enjoy your posts Ann and great sense of humour. I really appreciate you on this bb. June in Toronto
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Posted by: Ann Doyle ®
06/22/2003, 17:05:06
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Jume. I'm glad you mentioned the guilt thing. There is no reason for us to feel guilty. We haven't done anything wrong. Tell me one thing to feel quilty about? Would he feel guilty about not going to a quilting party and sit in a corner while you ladies chatted and quilted?
It's nice to know you understand Tupperware parties. Ann Doyle
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Posted by: June in Toronto ®
06/23/2003, 18:44:35
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Bless his heart, Ann, but my hubby would go to a quilting party and sit in the corner and read his ECONOMIC's book if he felt I needed a ride or something - he'd be as happy as anything! I wouldn't let him go though as I'd feel guilty........he was there and not participating...... Oh boy this guilt thing. We didn't ask for beb and more did we, so you are right - don't feel guilty?June in Toronto
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Posted by: rita ®
06/25/2003, 00:44:59
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Hi June
I hope I did not hurt your feelings when I said you sounded like you were down in the dumps.. I was just concerned about you. Anyway I hope you are feeling better..I can hear your sense of humor and caring in your posts again..See you are on the mend...Take Care and stay well...Rita
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Posted by: June in Toronto ®
06/25/2003, 11:17:26
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Of course you didn't hurt my feelings, Rita. The printed word is difficult in portraying our real feelings sometimes - we really still need person-to-person contact for a `real' conversation don't we? Yes, I am feeling better thanks - the summer weather is here and, although very hot right now, at least we don't have to wear coats and boots and worry about how to keep that cold, cold, wind from hurting our eyes. Now its sun hats and dark glasses. I've been taken out to lunch a number of times in the last week as a birthday treat - one more for Friday and I'm finished. My diet has gone completely, but I've loved meeting up with some good friends. Thanks for caring. You have a great day. June in Toronto
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Posted by: Lyn Down Under ®
06/21/2003, 20:55:52
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Hi JuneI live quite a solitary life but don't feel out of the loop because it is my choice. My nearest town is a good 30mins drive away and I try to only go in once a week which is more than enough. I go the the library and shopping, sometimes drop in on a friend and am always so glad to get back home where my dogs give me such a wonderful welcome. I have my wildflower group meeting once a month and that is enough. My favourite hobbies are all things one can do alone such as gardening, reading, sewing and the computer of course. I find my eyes are more relaxed when I don't have to keep talking to people all the time. I prefer sending emails. I send two a day to a friend in town so she knows I am still OK. If I forget, she rings me to see if anything is wrong. So I don't miss socializing at all and with the dogs, chooks, geese and frogs, don't feel alone. Just being on the BB is wonderful too as we've all been there, done that. Lyn in winter desperate for rain to fill my tank
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Posted by: June in Toronto ®
06/22/2003, 10:54:46
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Glad you have `found your way of life' with beb, Lyn. I've always lived in a city (London, U.K., then Toronto) and its different. I do miss not being able to have a dog in our condo apartment (rules won't let us) but am too lazy or something to think about selling up and moving to a small house. Uusally I'm quite content with my life, except for having beb/meige of course and the other aches and pains that go with age, but others seem to think I'm missing out on some things and I don't agree. I'm glad you are happy with `your lot' and I wish you well.June in Toronto where its a beautiful summer's day.
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Posted by: Ann Doyle ®
06/22/2003, 17:13:34
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I think we start enjoy being alone when we learn to like ourselves. I know my fauts and I like me anyway. Sometimes I get annoyed with myself but that is usually the Bleph thing acting up and there isn't too much I can do about it except get on the bb and say*&*&&$%#$&^(#@.
Wonder if that will get by the censors, I mean Moderators. Hi Guys! Ann Doyle
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Posted by: Barbara Molnar ®
06/22/2003, 18:13:05
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June,I know just how you feel - some days I want to just give up and stay at home forever but I force myself to continue in the world. It is very hard because one day is okay and the next is horrible and you never know which it will be. Don't stop going out because then you are giving up and you don't really want to do that. My prayers are with you,
Barbara in New Jersey
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Posted by: June in Toronto ®
06/23/2003, 18:37:51
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Thanks Barbara, I never give up (its not my style) but I'd much rather `party' (go out) during the daylight hours than face the night lights that `kill' my eyes. I pick and choose the evening activities to see if they are really worth it! Winter is the worst here with such short daylight hours, so I shouldn't complain now as its summer and the days are much longer, so, therefor the partying goes on longer:-)June in Toronto
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Posted by: APhair ®
06/25/2003, 19:41:19
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June, I think we all know how you feel as we have as they say "been there, done that". I have fought shying away from things as I just plain refuse to let this get the best of me. That is not to say that I would prefer being by myself because believe me, there are those times when the eyes are so bad that I just want to stay home. For some reason, I have a horrible time in Church. I don't know whether it is the lights or the fact that I have to listen and am not talking but my eyes stay shut for most of the Mass. As I think you know, I am very active in several Organizations which keep me extremely busy. While I have to rely on my wife and others to drive me places, I find that I need that social contact even though it is tough. I try and visualize that down the road, God forbid that my wife passes away before I do. If I am a hermit now and don't have those contacts, I will be in deep trouble then. I know that true friends will come to the house, but I need more than just that small circle one usually calls their true friends. I don't know if what I said makes any sense as I tended to go full circle on the whole thing as usual but just my thoughts. It doesn't make them right...Alan
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Posted by: June in Toronto ®
06/26/2003, 11:15:50
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Hi Alan, I understand what you mean, I, too wonder what would happen if I were on my own with only a few good friends (and they don't live close to me anymore). I know how active you are with organizations and admire you for that and am glad you keep going the way you do. I have to figure this all out for the ....nth time I guess. Thanks for your thoughts.June in Toronto
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Posted by: Moderator-JB ®
06/27/2003, 15:27:34
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Alan,You do realize that YOU give so much to everyone else by just being there don't you? Having met Alan and his wife in person, at one of the conferences, I know that he reaches out to people in a very special way. Keep talking friend, Judy
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Posted by: Ann Doyle ®
06/27/2003, 17:05:32
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Alan, I have never been to a church that didn't hurt my eyes. Some have fleurescent,lights, some mercury. Both are hard to manage. Also it could be the theater type of seating, I find I hold my head back and look through slits. I get so uncomfortable that I think I am getting nothing out of it except thinking how uncomfortable I am. Then I stay home and listen to preachers on the radio. There are several that I like. In fact my own preacher is on. But like you said , we need the social contact. I go back for awhile and there are so many new people I don't know. I last about six weeks and then I stay home again. I wear my minted glasses in church but they just don't help enough. Ann Doyle
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Posted by: ofudge ®
06/26/2003, 11:27:58
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June, I know what you mean. I do get out for church, Sunday mornings and night and on Wednesday nights, then straight to the car and home. Except for work I don't even want to go to Mother's, right next door to us. I have been called anti-social and worse, but I certianly can relate. Raymond in Alabama
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Posted by: Sally - in - Idaho ®
06/27/2003, 15:29:57
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I am frequently called antisocial, too. To a certain extent, it's true. Much of the time, however, I'm just protecting myself and I feel I have to do that. No one is going to do it for me. I'm learning to pick and choose what I can comfortably do and to just let the negative comments roll over me. Hard to do sometimes as it seems that by now, especially in such a tiny community, people should be getting the message and leaving me alone.Sitting at home pitying myself is not something I do. I rather enjoy my own company and thoughts (maybe that sounds conceited) and don't appreciate having to push myself to be sociable. I rarely pity myself because I have comforts enough in life and this affliction could be worse. I, too, don't want to go even to my mother's ... three blocks away. I much prefer telephone conversations to face-to-face confron- tations. Sally in North Idaho who once had the most wonderful Springer Spaniel dog named Fudge.
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Posted by: June in Toronto ®
06/27/2003, 16:30:18
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Nice to see you back on the bb, Sally. The first paragraph of your post describes what I feel exactly (except perhaps I don't let the `negative comments' roll over me enough!). I enjoy my own company as well - having been a single parent and independent for so many years, I relish some time to myself (on occasion).Hope you aren't suffering too much from the summer's heat - I know you don't enjoy it! June in Toronto
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