Re: support
I'm so pleased to hear that Kelly's very first support group meeting was such a success. It makes such a difference to people to be able to compare notes like this in person and to support each other. I'm also glad, Rhonda, that your friends are beginning to understand the disease you are dealing with - its hard for them as we don't always understand what's going on ourselves! Good luck with figuring out about continuing your job. I went through this for a couple of years before I decided I couldn't cope with it anymore - the commuting was as much of a problem as was the job (I worked for a university) - but I know we are all different, and I am older I'm sure.June in Toronto (beb/meige)
trying to work
beb has ruined work for me. i have a ride in to work
but to get home i have to walk 4 or 5 blocks to the bus
stop, get to the first transfer point, and then catch
a bus that will get me in my neighborhood. this last
bus does get me extremely close to home, but i do have
to walk a couple of blocks to my house when it lets me
out.i am 42, and i am a cpa. i work with a lot of numbers
and spreadsheets on the computer. last week was hell.
i worked so deliberatly, and it took forever. i just
wanted to scream. my eyes felt aweful. my deal is - do i try for disability or assume my eyes
could get better with subsequent botox injections?
this one didn't work well. rhonda coutant in dallas
Re: trying to work
No one can make that decision for you Rhonda. I also live in Canada and the rules are different I'm sure for applying for disability. As others had said you might see if you can apply for short-term, to give you some time to figure it all out without the stress of commuting and working full time. Terms of most long-term disabilities are, I believe, that you are unable to do any job not just the one you are currently working at. I know its a BIG decision for you - good luck with it all.June in Toronto
Re: support
I'm so glad your friends are beginning to understand and be supportive. I had a couple of friends at work who understood in the beginning but it took several years for my other friends to clue in. Part of that, however, was my own fault. I have always been an overachiever and a perfectionist and admitting that I could not do something was not in my vocabulary so I "hid" my condition for a long time. I have one friend who has loaded up both our little ones (still in car seats), driven me to the doctor, and entertained the girls while waiting for me. That's friendship! I would encourage you to continue to be honest with your friends and accept help when you need it. You are on the right track!
Kelly
Re: support
Yes it is hard for friends to understand, especially in the beginning when we try to hide it and it isn't easy to ask for help. Also I've found that if I'm really hyped, excited or passionate about something, my symptoms may seem less noticeable. Examples like when my family or friends are with me for short periods of time or when I am having a support group meeting. This past Sunday there was a new person who came and his eyes had been essentially closed since Aug. He had to quit his job as a printer, and his only income is coming from some rental property. He got up on the roof with someone else to repair it and his eyes stayed open the whole time he was up there, then closed again when he came down. He was puzzled, but I told him of other similar weird stories where our eyes seem to rise to the occasion. Then someone said to me. "Your eyes look normal to me. You don't look like you have BEB." I had been doing a lot of talking and my eyes open when I talk. Suddenly I realized, doing the meeting was "a roof top experience for me and my eyes rise to the occasion every time". Unfortunately as soon as I leave they usually shut down.Hip hip hurray to Kelly for doing the support group!
Re: normal eyes
Delaine, my first thought when I looked at the picture you just sent to me was that your eyes look so "normal." Maybe that was a roof-top day when the picture was taken.Sally in North Idaho whose eyes don't like to try to be normal.
Re: normal eyes
I am always on the roof top on Support Group Day! I feel HIGH! If you could see me now with my eyes barely open and my nose crunched up! I took a deep breath just before the picture was snapped too! That helps.
Re: support/delaine
delaine , i have had many such experiences as you describe. when you are thru with something, your eyes just shut down and it is an unbelievable extreme. hard to figure out . it's important then to rest and then change activities i find. for example my eyes are not doing well on the computer this morning at all.
Re: support
Thanks, Delaine, for all of your encouragement! Our group is on its way and I'm excited! Loved getting the picture (I totally forgot to take one at my meeting but will next time.) I have "rooftop experiences" all the time. I really noticed it when I painted Morgan's room. Her room still had ABCs on the walls so I recently turned it into a "big girl room". My eyes were open all day while I painted. I have been many places where people say they can't even tell anything is wrong and then 10 min later I'm completely shut down. I bump into at least 3 walls every time I put away laundry.Kelly in Dallas
you may be a blepharo if you have roof top experiences
You go girl! It was over a year before I remembered to get someone to bring a camera and it turned out to be the least group we have ever had. So I made excuses for not sending in the picture...the conference was coming up and they didn't need filler for the newsletter, then they had the conference and they didn't need filler, then Mattie Lou died....I just kept putting it off, hoping I'd remember to make a picture at a meeting where I had better attendance to show off! In truth even if only one person shows up, it will be the person who really needs your support, so how many shows up is irrelevant. That is why I listed all those not pictured and included the names of everyone who has attended in the past. They were there in spirit.Yeah you may be a blepharo if your eyes have been shut for months, but stay open the entire time you are up on top of the roof to help with repairs and then close again as soon as you come down from the roof. Yeah you may be a blepharo if you can paint a room and your eyes stay open, but you get black and blue from putting up the laundry. You may be a blepharo if you can stay outside for hours digging in the dirt, but stumble with your eyes clamped shut when walking down the driveway to get to the mailbox. You may be a blepharo if you are told your eyes look normal when you do your support group, but slam shut as soon as everyone leaves. You may be a blepharo if you can see to clean the toilets, but have to hold on to the wall to get to the bathroom. Anybody else jump in at anytime.
--modified by Delaine Inman at Thu, Jan 24, 2002, 15:38:10 --modified by Delaine Inman at Thu, Jan 24, 2002, 15:47:10
Re: you may be a blepharo if you have roof top experiences
Wow! All those things you said are me. Why is this condition so on and off? There are times when my eyes will act perfectly normal for a short span of time. Other times when I get up from a chair to walk to the other room and my eyes will clamp shut and I'll stand there frozen for a minute then through slits make my way another three feet and SLAM again. One more for your list. You may be a blephero if your eyes do all of the above most of the time.Except when you have an appointment with a doctor to talk about it. You get into the doctor's office, your eyes decide to behave and you look so normal they probably think you're a hypochondriac. Aaaaaaarrrrrrggggghhhhh!
Re: you may be a blepharo if you have roof top experiences
>Why is this condition so on and off? <In every one of the situations you have described, if you look carefully you will find that something is turning on your production of Adreniline. It's very helpful -- keeps blephros from running their cars into trees, most of the time. Now if we could just figure out how to turn it on at will ... --- Lynn
Re: you may be a blepharo if you have roof top experiences
Maybe injections of adrenalin, or those time-release capsules that would shoot it into our systems regularly all day long??Sally in North Idaho
Re: you may be a blepharo if you have roof top experiences
adrenalin is from what gland? the adrenal? which works in conjunction with maybe the thyroid?
Re: you may be a blepharo if you have roof top experiences
i don't know, bit i took my parakeet who was very sick to the vet one time and he perked up. the vet explained that he was extra alert so a predator wouldn't get him. an adrenalin response, perhaps?
Re: you may be a blepharo if you have roof top experiences
My roof top experiences come when I am reading the computer- different story when I type. I have a hard time reading a book or the newspaper but I can read the "sales paper" which does me no good because I don't have the money to shop the "sales", or a means to get there unless someone drives me.Also I can watch TV, I can do my "Tole" painting. Most of the time my eyes stay open while talking to people but close as soon as I finish. But my eyes close while riding in a car, (can't take chances with driving) When I get out of the car and start walking I have to grab my husband or whoever drove me by the arm because they shut while walking. My eyes close when cleaning the house. Anything that involves movement I think is my trigger point. I have so many bruises on my legs, shines, arms from bumbing into furniture as I move about the house. Sunlight and light cause my eyes to close, I love cloudy days - well mostly anyway.
Some mornings I have to put on my sunglasses before I start turning lights on - because the sudden change from darkness to light makes them shut down. I have had to get up in the middle of the night to go to the bathroom or kitchen and I can find my way through the house with my eyes open and I do not bump into anything but if the lights were on, I would shut down immediately. When I first awake in the morning I can lay in the bed with my eyes open and even with a little light coming through the windows but let me get up and they shut down. Weird!! Joyce in NC
Re: support
These are some insightful posts--I find the inconsistencies of this
disorder one of the most frustrating aspects of it. I have friends
whom I don't see very often and I am usually not too symptomatic
as far as my eyes and breathing (the breathing irregularities and broken speech are more obvious with me). So it follows, they don't
understand the disorder because they don't really see it full blown.
One of them called me recently and my breathing was really kicking in
and she finally heard it. And it was as if, yes, you do have a problem!! Of course my coworkers and everyone who sees much of me is
familiar with the symptoms but I am sure even they wonder why it comes
and goes as it does!! I just keep being thankful for the good times!!
Joanne M. San Diego, CA
Re: support
Hi Delaine,I wonder if this would have anything to do with one part of the brain taking over another. I mean like if we get our mind on something else entirely, if it helps our symptoms. I'm probably not making any sense, so hope you understand what I mean. It's like during a nice summer day when I'm out working in my garden, I don't seem to notice any problems. Even my husband tells me I seem better. I read the post about weather changes making a difference in beb/meige symptons. I notice a difference in myself also, but maybe some of this is related to how we basically feel mentally. It would be wonderful if we could all just wish this condition away, wouldn't it? I wish I could wish it away for everyone who has it. Carol in Naselle, WA where it is RAINING!!!!!! p.s. I am the one who was bragging about cancelling my 3 month botox injections because I felt I didn't need them. Well, I'm going past 4 months now and my eyes are beginning to "shut down". This is the longest I've gone though without botox.
Re: support
>... cancelling my 3 month botox injections because I felt I didn't need them. Well, I'm going past 4 months now ...<Let me encourage you to continue to stretch your endurance each time you get the Botox, as it seems to work well with the drug to lower the need for it. My duration is beyond 7 months now and still slowly increasing. Remember to keep control of your life and your eyes -- YOU are your best judge of when you need the shots, YOU do the scheduling! Cheers, --- Lynn
Re: support
Thanks Lynn - I'll keep that in mind. My eyes are better today, so I'm thinking maybe I'm on the computer too much so I'm going to cut down a bit and see if it doesn't make a difference.Thanks again! Carol in Naselle, WA where I think it's going to snow!!
Re: support/lynn
i am doing that right now , lynn. i call it " living dangerously with beb".
Re: support
Rhonda, I'm glad that your friends are able to understand things a little better. It is hard for others to "get it".
I can only imagine your difficulty with working with numbers all day. I had a lot of documentation to do with my job and barely made it through the school year (I was a school nurse at the time). I only had minor problems for a couple of months which I thought was due to my contact lens (which I stopped wearing) and then a worsening for about a month and then within 2-3 weeks was totally shut down. The shutdown occured within a week or two after the school year finished. So much for my husband's theory of it being stress related to work. I knew that it wasn't as I loved the job. He felt as soon as I was out for summer vacation that I would "get well". I was stressed because I was having difficulty seeing to drive and doing what the job required of me.I'm really glad that you got to go to Kelly's support meeting in her home. I'm sure that really helped. Write a "novel" anytime you feel like it. There is usually someone hear to listen. Remember that you are probably helping others that don't post that may feel exactly like you do. Shirley in Arkansas with BEB/Apraxia
|