Re: Where do we fit?
Judy,I feel the same way you do. I certainly had envisioned our retirement totally different. There were so many things I wanted to do. But I guess we have to play the cards we are dealt. I try to be grateful for what I do have and can still do. Some people aren't even that lucky. Christel in Ca.
Re: Where do we fit?
Hi Judy,
I went shopping this afternoon at the mall with my husband for about 2 hours. Somewhere, I have lost 2 whole friggen years! Drugged to the max with my trio of meds and positive results of the surgery and I was able to walk around (without holding on to hubbies pants pocket) and not run over anybody and actually look at some things and the other people. I did have my darkest FL-41's on. The kids have changed. What they are wearing has changed. The mall has changed. All I could think about was that I had actually lost 2 years and hadn't been able to keep in touch with what was going on out there in the world around me. I can't say that I am happy about the influx of tattoos and rings in the noses and all kinds of things hanging from ears and every other body part. Yes, I know that all this has been out there but we actually didn't have quite as much as we do now. I was shocked at my loss of contact with things.I know that it is selfish of me but I really resent it when I go over to see my parents who are 86 and my father starts complaining about just recently having to stop driving and the fact that he can't go to the bank and go shopping and go visiting relatives. He then tells me that I have my whole life ahead of me and I can look forward to doing all the things that he and my mom did when he retired. He still doesn't get it that I don't drive anymore and that my sons or husband have to take me to see them and take them to their doctor appointments. When my problem does actually affect him in some way, he says that he hates it that I have this problem and wonders what he will do without my help. Retirement, traveling, hopefully seeing my sons marry and have children and being able to take care of grandkids seems a whole lot scarier and almost impossible at times. It did seem impossible before I had the myectomy. Right now, things are holding their own, and not progressing but I'm not naive enough to think that couldn't possibly happen. It is a chronic disorder. I have an on-going battle with frustration and depression and they are always in the background, lurking there. I accept that I have this and it is probably not going away but it does scare me. What was the question, Judy? Oh, yea. What do we do? For me, I had the surgery and hoped for some improvement (which I got) and I will take the medicine that I hate to take and I will do things when I can do them and when I can't, I'll probably cry and get mad and then get over it and go on. I will continue to learn as much as I can and try to help others as that helps me. My life is not and will not be as I had hoped and planned for but I am at a place right now that is better than it was 2 years ago when I was laying in bed crying all the time. I am adapting and things don't look as gloomy as they once did. Shirley
Re: Where do we fit?
Well spoken, Shirley. I have the same sentiments exactly with my own set of problems.
Evelyn
Re: Where do we fit?
Younger looking I'm not giving up on - hide that gray hair, botox for the forehead (only for the beb, but it does take care of the wrinkles). Attractive I have given up on - I can't even stand to look in the mirror with the spasms. But physically fit is the one that bothers me the most. The things I used to do cause spasms and breathing problems. I'm still going to try some things, but this one is a challenge.As for retirement plans - sure, they will be different than I had thought, but I agree with Cristel - I'm going to do what I can, when I can, and know that there are those who can do more and those who can do less. It's just a fact and I might as well get used to it. That doesn't mean that I will stop trying to improve my condition, just that I will try to live the best I can while I do it and adjust my plans accordingly. Virginia in AL, headed for AZ - has anyone looked at the forecast? 106 on Friday!
Re: Where do we fit?
I might as well have registered to go to Scottsdale ... it's been hitting right around 100 degrees here (today, for sure) and supposed to continue all week!! I could have made it to California and then Christel and I could have hung on to each other the rest of the way.Oh well. Maybe in my next life. Sally in Hot, Hot, North Idaho, where it is still 84 at 11:30 p.m.
Re: Where do we fit?
Virginia I agree with you re the exercise roadblock. I have the same
difficulty with the spasms but mostly the breathing when I exercise
so I modified it quite a bit and get just a bit more aggressive when
I am having a better day or better few hours. Yes, retirement will hold something different for me than what I expected which was to be healthy and still married and I sometimes
get rather annoyed about that to say the least. But God has a different plan for me and I will see day by day how it unfolds. We have talked about traveling on earlier posts--I am glad to have done much of that over the years. As most of you have mentioned, we have to deal with this disorder best we know how and it will involve all the emotions that go along with it. Virginia look forward to seeing you Fri. together with the others who
are attending. You will probably be able to recognize me with my
BEBRF visor that I already have!! Unless the rest of you are already
wearing them as well. Will miss you Judy and see the rest of you
soon. :<)Joanne M. San Diego, CA
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We've just got to feel what we feel, vent, write, share, cry and have pity parties every once in a while. Then we've got to pick our selves up, help some body else, put things in perspective, be thankful and try to adjust our attitude to positive and take it one day...moment at a time. Worry, fear and anxiety doesn't do anything positive, they put obstacles that block our faith, our hope, our sense of humor and the flow of love.....the very things that see us through to another day. So here is to another day and I pray a good one or a better one for all.Delaine who will miss seeing all of you at the conference....good luck with that 106 temperature. Be careful and don't over heat. Hugs to everyone for me.
--modified by Delaine Inman at Sun, Aug 12, 2001, 23:33:47
Re: Where do we fit?
All good answers. We really can't change the basics that we have this "condition" to deal with. All we can do is try our best to adapt and make our lives worthwhile, both to ourselves and others. It seems to require a whole new outlook on things, though.Right now I'm concentrating so hard on keeping ahead of the heat and not knuckling under to it, that my eyes have kind of taken second fiddle for a few days. I get very sick in heat and it's a full-time job keeping myself on an even keel and managing to do the things I absolutely have to in order to keep my farming family going. Why don't you shoo some cool ocean breezes over the mountain, Judy! How are you surviving your husband's retirement? That is something that is not easy. I do not like it when my husband is home all the time telling me how to do everything and how I don't know a thing. I'm glad when he is out farming at age 71! Sally in North Idaho where it's too hot to go to bed.
Re: Where do we fit?
Someone on the Dystonia BB posted a little thought to remember that I liked:Just because you have pains doesn't mean you have to be one. I'm going to try to remember that!! Sally
Re: Where do we fit?
Sally, thanks for the message, I'm going to write it on bulletin board in kitchen so I'll see it many times a day and won't forget it. penny in oklahoma city
Re: Where do we fit?
All I can say is hopefully by the time I retire there will be a cure since I seem to be missing out on my younger years. Maybe in some ways having young kids at home is mentally easier because it gives me a focus. I definitely get depressed - I missed my 6 year old's first big water slide and had to let my daughters ride go-karts with my husband and my dad. I went so long not even able to bathe my children and now that I don't work I can atleast give baths, cook meals, play games, and I taught my daughter how to read chapter books by 5 1/2. Saturday was a really bad eye day for me - had a baby shower that morning (hubby had to drive me) and we took the kids to see Princess Diaries that afternoon. I drank tea at the shower and I don't know if the caffeine is what did it or if it was just one of those days but Aron had to put the girls to bed and I laid down with a cold cloth and a book on tape for over an hour. I felt sick but knew I needed to eat but I was spasming so bad I bit the inside of my cheek trying to chew. It is very frightening with a 3 and 6 year old not knowing what the future holds but I always have the hope of tomorrow. I have to for their sake!!Kelly in Dallas
Re: Where do we fit?
I retired 5 years ago & have my children raised. I am enjoying your comments & agree with all of you. It is frustrating & I do get rather teary at times & am so thankful for the BB. My brother suggested searching internet for family tree, history, etc. So I might work on that. It does help to keep busy & think positive. A problem I have is having to hold an eye open with my left hand & my arm gets to aching. Looking forward to meeting many of you this weekend. Joann
Re: Where do we fit?
Oh! how many of my working years did I long for my retirement day. I had such plans. At the top of my list was doing genealogy. I even hoped to take a trip or two with my friend who goes to Salt Lake City every year with the genealogy group. Maybe I set myself up for disappointment, or maybe it's an A-type personality thing, but I plaster my nose to the screen for as long as I can handle it, call the library and order microfilm, and when it comes, it might as well be a blank reel. Frustration sets in as my husband finds what I so much wanted to do myself.
Genealogy isn't the only part of retirement I looked forward to. I looked forward to continuing landscaping, doing a project from start to finish. I wanted to take art lessons again, but oops! that isn't a brush; it's charcoal. I wanted to write and let the words flow onto my computer. But now I write bits and pieces and hope I can finish it before I die.
These are some of my gone-by-the-wayside (or is it temporary detour) retirement plans. But it's not all hopeless. Instead of jumping in my truck to go to the store, I relax and listen to one of the best talking books I've gotten so far. I can still use the treadmill (that is, if the heat drops some). To shorten this (or I'll go on all day), thank God most of us are "don't give up" people. I actually enjoy and feel great about accomplishing another lesson in braille, a meal that is eatable, seeds that I planted yielding something beautiful, time to find a new me. Yep! retirement is not what I envisioned all those years. Now it's something more; a new challenge; a search for the other me - the vision loss me. But I will survive and enjoy my retirement in other ways. It's not what I envisioned, so I'll envision something new. And I do find time to cry sometimes. graceanne in port orchard where it's cooler this morning and I hope for you too, Judy
Re: Where do we fit?
Judy, I haven't been handling it so well lately! I've had beb/meige for over 6 years now and thought I was doing pretty good with it all - true I can't read much which was something I longed to do more of when I retired - the hot summers cause breathing problems - the cold, windy winters cause my eyes to close, but still overall I thought I was doing ok. BUT then came this spring and summer and nothing seemed to work, not the botox nor a booster set of injections, not the clonazapan (made me like a zombie), I've fallen quite a bit and I got feeling very sorry for myself. I did all the usual things - count my blessings, listen to music and talking books, be good to myself, etc. but it hasn't completely gone away after many months and I'm still struggling on the edge of it all. I'm one of those people that hides away with problems, rather than asking for help so I even stopped talking to many of my friends and felt even more isolated. What a shame I'm learning the hard way!I find it so strange that it took me 6 years of having beb to get to this stage. Had it occurred the first year I would have understood it - and perhaps others would have as well. I had planned so much for my retirement - but realise I now have to plan for a different kind - I'm working on it! June in Toronto
Re: Where do we fit?
Several years ago, (as my husband would say, several, several, years ago) when I was approaching 40, I was very upset on "being old" I didn't even like anyone talking about it. One day I read something in a booklet for inserts for the church bulletin. It said if you are upset about getting older, think of all of those who never will have the chance. After thinking on that for awhile, I decided to get a grip and accept it gracefully. Sometimes that is the way I feel about blepharospasms & meige. I certainly don't like it, but try very hard to accept it. The Lord has promised He will never leave me nor forsake me. He's always been there for me. Billie in Kansas where it is cooler but pretty dry so I'm watering my grass so it won't die. I've worked really hard planting & taking care of it I can't let it die now.
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I think alot about those who will never have the chance to get older and I cherish every second with my kids because of it - limitations and all. I have a friend whose sister (my age - 32) just died of cancer. Her daughter is 3. My babysitter's mom died of cancer 4 years ago ( she is now 17). My best friends dad (retired in Jan) was just diagnosed with a terminal illness. Life is one day at a time and every night I thank God for giving me the priviledge of living another one (and of course pray for a CURE!)Kelly in Dallas where my grass is almost dead in this dry Texas heat.
Re: Where do we fit?
Hello Billie! Where in Ks do you live? I live in Lawrence, Ks. Just curious.
Re: Where do we fit?
June, thanks for the post and your honesty. I want to encourage you--you are an important part of this bb and I appreciate that. All this sharing is just wonderful--dreams, hopes, frustrations, etc, etc.
Take good care....Joanne M. San Diego, CA
Re:I chose not to "go public" with this theme
The features department of "The Spokesman Review" newspaper in Spokane asked the members of my senior writing group to write essays on the theme of "I never thought it would be like this" ... pertaining to reaching our "Golden Years."I debated writing about the perils, problems and frustrations of BEB, as I felt that would be something different from what the others had; however, my husband would not have approved of my "going public" with my so-called aches and pains. So I went with another thread of life and ended up not satisfied at all with what I submitted. The editors will select some essays to be published in the Sunday, August 26 edition of the newspaper. All of them will be on the Internet for some time after that. It will be interesting to see what 80+ seniors come up with. I am sure there will be those with health problems, but I had thought this might be a way to publicize "our" ailment. Maybe another time. It seems that we are all experiencing frustrations over not being able to do the things we'd planned on in our retirement, but from reading all the posts, I do believe that most of us are making a real effort to adapt and get on with as much in life as we can. There will be a surplus of lemonade if we all do that! Sally in North Idaho where it is oh, so HOT ... and I need lemonade!
Re: Re:I chose not to "go public" with this theme
I know you will all have a good time this weekend. Wish i could
go would really like to meet all of you.
Like the rest of you i was looking forward to retirement,but things dont always work thhe way we would like.After myhusband retired he had heart surgery 3 months after that beb hit me full force.We are thankful now for what we are still able to do.I will be glad when school starts
after my husband retired he needed something to do so he startad driving a school bus i will be glad to have some time for myself guess i should not fell that way but i dont.
All of you have a good time
Colleen in IL a cool wave coming in tonight
Re: Where do we fit?
i don't think there is any retirement from a chronic disease or disorder unless they find a cure. am i being too negative?
Re: Where do we fit?
Kathy, I don't think you are being negative. I think you are just stating a fact and facing reality.
Re: Where do we fit?
I used to feel sorry for youger people with this condition. How difficult it must be to raise children or have to go to work.
I am retired and do a lot of volunteer work--a lot less lately. Now I see that one of the hardest things is not to give up. It would be so easy to just stay home and vegetate in a chair. That is something that I have to do sometimes but it is sometimes a struggle to "get out there" in the public . I go through the "what if's" and think how much easier it would be just to go take a nap instead of going through the struggle. You can't give up when you have children. But yes you people raising children do have my compassion. I can't imagine how difficult it would be at times. I won't give you any sympathy. Who needs it.
I do know how difficult it can be with children. I raised 7. Had the first 5 in 4 years--4,3,2,1 new..10 months apart, 13 months apart etc. That was BP--Before Pill.
Re: Where do we fit?
Whenever I start feeling sorry for myself, I think of Christopher Reeves - how drastically HIS life has changed, and I feel a LOT less sorry for myself. It works for me!
Re: Where do we fit?
I too always think of Christopher Reeves.
I think of him when he tells all the world that
he believes he will walk again.
I don't feel he's being unrealistic nor is he not
facing the truth.
I'm sure he knows the facts.
I feel this hope and determination keeps him going each day.
This is what works for me.
Mindy
Re: Where do we fit?
I'm not to retirement age yet but when I feel down about my condition I realize that I have survived cancer and that I am still here. Having two chronic conditions (Bleph & Fibromyalgia) puts a damper on things but I am so fortunate that God has granted me this time. Just last week I was planning to have two kids getting married in the near future and as of this weekend both decided the relationships may not be what they want in a long term relationship. Both are still in school for degrees so I am glad they have decided to wait. I find not getting out of the house as much that I feel like I am sitting here watching others lives. Sometimes I wish I could go out and live a fuller live. So I know there are others out there experiencing the same feelings as I have. Thanks for being there to listen. You're a great bunch..... Coleen in central PA when my eyes are starting to close more with the sunshine today.
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My girls are 6 and 3 1/2 and they keep me hopping. Seven would wear me out-especially now. We had one more baby after my beb diagnosis but decided my body couldn't take any more so we fixed that problem permenantly! It is very hard raising a family with a chronic illness (any illness) but I don't have alot of time to think about myself - at least not until 8 pm. I have an awesome husband, that's for sure. I keep thinking surely there will be a cure long before I reach retirement age. If there isn't I will spend a good 60 years of my life with beb which is a really scary thought. What type of volunteer work do you do? I had to quit work as a cpa but do try to help out in my daughters class at school a couple of times a month.Kelly in Dallas
Re: Where do we fit?
Kelly, I volunteer at the hospital. I work the information desk. I used to be an assistant chaplain but I can't take the flourescent lights in the halls. I also tape recorded math and computer books for the blind but they moved that operation to another ciy. I also worked at a Help office to interivew people that needed financial help and if they did tried to find it. That was very challanging and rewarding but too stressful. Too, I got an "attitude" after 5 years and knew it was in their best interest if I quit. I have way too much time on my hands since all this started.
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My husband is a nurse and a firefighter. He worked in the ER for years but between the two jobs was on an adrenaline rush all the time. Now he works at an imaging center doing cat scans and mri. Reading is one of the areas I have the most trouble with. When my 6 year old reads to me she asks me if I am asleep. I have just started listening to books on tape and love it. I was an avid reader prior beb and finally gave it up a couple of years ago. It's great that you are still trying to help others.Kelly
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