Blepharospasm Bulletin Board

Venting!
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Posted by: Kathleen
03/05/2004, 14:46:54


I re-read the post by Karen and can so identify with what she is saying. I am still in the anger phase of my adjustment to this disorder. I'm finding it very hard, partly because they think that mine may be related to a head injury I had over 20 years ago. My sister was killed and I was critically injured by a driver under the influence. I'm finding that it is bringing all that anger and pain back. In addition to that, I have always been a very driven person with goals and life planned out well in advance - now something that I can't control is governing my life. After the accident, I was able to fight my way back to a normal life after a time - this I'm told is not likely to ever go away (very small percentage of spontaneous remission.) I appreciate having found this bulletin board group. I've spent quite a bit of the last couple years wondering if I was losing my mind and its nice to hear that I am experiencing the same things that many of you are. Thanks for letting me vent. Kathleen



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Re: Venting!
Re: Venting! -- Kathleen Top of thread Archive
Posted by: Debbie
03/05/2004, 17:46:48


Dear Kathleen,

I liked reading your post. Venting is good for the health! I hope it made you feel better to write it and to know that others with the same disorder are reading what you write and thinking about you.

Reading your message made me wonder about blepharospasm and personality. I'm not quite as driven and goal-oriented as you are, but I am somewhat of a perfectionist, and often expect others to meet my high expectations.

My eyes are worse today and I am under a lot of stress for a variety of reasons. They had been steadily improving. This makes me wonder if anxiety/anger/stress are affecting my eyes.

Does this make any sense to you, Kathleen? I am also curious about how BEB could be related to the head injury you underwent so many years ago. That's the first time I've heard anything like that! Why do the doctors think it might be related?

Hope this post makes sense--I'm feeling pretty exhausted and terribly incoherent today!

Debbie




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Re: Venting!
Re: Re: Venting! -- Debbie Top of thread Archive
Posted by: Lynn Yarbrough
03/05/2004, 20:57:22


Stress is widely recognized as being a contributor to the difficulties of BEB, although not a cause of BEB. So stress management is high on our list of priorities.

Several - perhaps one might say many - people with BEB have noted head injuries as a part of their much earlier, even childhood, experience. Me, for example: fell off a porch onto a curb, getting a moderately serious head trauma. I'm not sure it's a real factor, but taken with the reports of many othere BEB'ers, it's adding up as something to build a hypothesis around. Like many others, there was a long period between the trauma and the BEB. In my case about 25 years.

Don't be ashamed to feel exhausted and incoherent: it comes with the territory.

--- Lynn




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Re: Venting!
Re: Re: Venting! -- Lynn Yarbrough Top of thread Archive
Posted by: Linda Sue
03/05/2004, 21:46:31


I know how bad things can get with the BEB when there is added stress but I must admit that it was more of a problem for the first year and a half when I first started dealing with the spasms. Most of the time now I try to take deep breaths and try to relax. It doesn't always work but it makes me feel better. All of the people who matter in my life, my family and my friends, all understand what is going on and so it helps not to have to try to hide the problem and have that wonderful support. The rest of the people can just think what they wish. I have also learned that some things just don't get done on bad days. I am still bowling even though I said I was goint to quit. My team mates wouldn't let me. Sometimes I run into my team mates and sometimes I run into the ball return when I go up to bowl because movement causes most of the problems. I used to get very angry and now we laugh about it. I have learned that I can control my eyes by staring at one spot. I wasn't aware of the connection with head trauma. I had a mild concussion as a child and then had another head injury in my 30s. I will discuss it with my neurologist at my next visit and see what he knows of the correlation. Linda



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Re: Venting!
Re: Venting! -- Kathleen Top of thread Archive
Posted by: June in Toronto
03/06/2004, 06:39:41


You can vent to us anytime Kathleen - its good for the soul and we all understand and do it ourselves when necessary. There's been discussions in the past on this bb about what might have caused beb - head traumas, being only one of many suggestions, but only a small percentage of blepharos can identify with that. I believe many of us are pre-disposed to various diseases (I call beb a disease) and traumas and/or stress, among other things, can bring it on. I believe I had a pre-disposition to beb in early childhood (blinked a lot according to my Grandfather) and life and all the stresses (most of us have) it eventually surface when I was 50. Definitely stress can make worse ANY disease and we all need to learn to control it to the very best of our ability. The trauma you went through 20 years ago was terrible and its very hard for me to image how it must have affected you losing a dear sister as well. You know you have to let go of that pain as best you can. I considered myself an A-type personality and learning not to be is very hard indeed. Being close to 65 year's young now and not working any more has definitely improved things for me. It must be so much more difficult for younger folk to deal with working and their life. Yoga (started over 2 years ago) has definitely been a great source in helping with me learning to relax. For instance I have been getting up irratically (2 am to 5am) for a few weeks now and I definitely need more than 4 hour's sleep! So instead of worrying and fretting about it I've been doing an hour or so of yoga when I'm forced out of bed - most of this I can do with my eyes closed so I'm getting the necessary eye rest at the same time as well. One of these days I will sleep 8 hours and that will be payback time! Keep on trucking my dear - I pray for us all.

June in Toronto (Canada) who saw the sun come up with the birds this morning.




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Re: Venting!
Re: Re: Venting! -- June in Toronto Top of thread Archive
Posted by: Debbie
03/06/2004, 16:32:07


I didn't really express myself very well yesterday. However, after sleeping eleven hours last night (June, I feel guilty--I've been reading about your sleep deprivation....trust me, I rarely sleep this much, but it sure felt good!), I think I can do a better job.

I know we've already discussed stress and BEB many times on this BB. What I'm trying to get at is this--is there a "blepharospastic personality"? It would be interesting to take a poll of the BB readers and writers.

Perhaps many of us are perfectionists/goal-oriented/"driven", as Kathleen so aptly put it, and BEB is how our bodies try to slow us down? Has anybody else ever considered this? I have noticed that this seems like a fairly highbrow bunch (no pun intended!)

Debbie




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Re: Perfectionists, Etc.
Re: Re: Venting! -- Debbie Top of thread Archive
Posted by: June in Toronto
03/06/2004, 17:33:10


Yes Debbie, this has been discussed on this bb in the past. Some of us are goal-oriented (or at leat were prior to our dystonia onset) A-type personalities. Once again though nothing came of the survey we did - some are, some aren't. Some had head traumas, some didn't. Some had a huge amount of stress in their lives, others didn't. We really haven't found any common thread in the past few years except we are all human and have beb (which in most cases took a couple of years to be diagnosed) and experience stress in our lives. Go ahead with a survey though if you want to try it out. Best wishes

June in Toronto, Canada




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Re: Venting!
Re: Re: Venting! -- Debbie Top of thread Archive
Posted by: Cynthia
03/06/2004, 18:18:07


I believe that every person I've met who has BEB is a highly intelligent person. It would be interesting to know the average IQ :-). The head injury discussion is interesting. I had forgotton that I had a minor head injury when, as a child, my brother put a wooden chair under my mother's clothesline and I climbed up to sit on the line as a "swing". I fell off backwards, hitting the back of my head on the chair. It required stitches. (That wasn't a highly intelligent thing to do so that leaves me out of the intelligent group.) Debbie, if you slept for 11 hours you needed it ... no need to apologize!

Cynthia in IL




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Re: Venting!
Re: Re: Venting! -- Cynthia Top of thread Archive
Posted by: Ann Doyle
03/07/2004, 11:27:53


As a toodler I tried to ride my tryke down the basement stairs. We could have made a good circus act Cynthia.
And as for High Brow, that was a good pun!. Ann Doyle



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Re: Venting!
Re: Re: Venting! -- Ann Doyle Top of thread Archive
Posted by: Cynthia
03/07/2004, 17:03:18


Well, so much for our intelligence ... except for the pun of course. That was brilliant :-)
Ann, we're lucky to be alive!
Cynthia in IL up the road from KY



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Re: Venting!
Re: Venting! -- Kathleen Top of thread Archive
Posted by: Beth
03/07/2004, 18:17:35


At its worst, I tend to withdraw which is not like me. Was diagnosed about a year ago and ran the gamut of beating this thing and frustration. SLOWLY moving into the acceptance phase. I have worked long hard hours to accomplish the things I have, but I am learning that my health is more important and work is a major stressor. My goal now is getting "things" in order so if I need to quit I can. BEB has changed me, but the positive side of me is looking at this as a wake up call to pay more attention to self care. Be patient with yourself. BEB is a disorder and does not define who you are.



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Re: Venting!
Re: Venting! -- Kathleen Top of thread Archive
Posted by: Kathleen
03/08/2004, 13:49:11


Thanks, everyone. I truly needed some moral support and understanding. One of the reasons they are questioning the head injury as a possible cause (which I understand would then make it secondary bleparospasm, rather than BEB, although no difference in symptoms or treatment)is because I can not unearth any prior family history of a movement disorder. I am doing better this week - the botox seems to be helping finally. I am still working full time and when the eyes are bad, that is a real challenge. I had my own human resource consulting business until last year about this time and then gave it up because the traveling became too difficult. It's really hard to negotiate airports with your eyes closed! I'd had surgery on my eye muscles (for the wrong diagnosis) in December and was doing better. In June, I started working for an organization, then boom in August, eyes got the worst they've ever been. My new employer has been very understanding, but my husband and I have been talking about the "what if's" if I can no longer work. Drastic change in lifestyle, especially since our kids are going to be starting college within the next couple years.



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Re: Venting/ Airports
Re: Re: Venting! -- Kathleen Top of thread Archive
Posted by: Ann Doyle
03/10/2004, 14:51:56


Kathleen, I ask for a wheel chair to meet me if I have to change flights just in case my eyes are closed. They are very good. They will first take me to the rest room and then pick up something to eat or drink if there is time before taking me to the next place to get my plane. Ann



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Re: Venting!
Re: Re: Venting! -- Kathleen Top of thread Archive
Posted by: Claire from Canada
03/18/2004, 20:08:29


Kathleen,

I really feel for you!! I am also in HR and my employer has been very understanding, too. As a HR professional, it is my job to make sure that the necessary accommodation is provided to employees who have health issues (in Ontario, Canada, the laws with regards to this are very clear), and I am the first one to profit from this, with my doctors' visits, my impending surgery and subsequent time off. I hope that the surgery will help me extend my career; right now, after almost 3 yrs since my diagnosis, sometimes I think I am at my limit!! I'm 39 and have a five year-old daughter; my husband is there, too, but 2 incomes will ensure an easier future for my little one. My parents put me through college and I would like the same for my daughter. Besides, what would I do at home all day?? Bad question!!! Of course, I can think of lots of stuff!!! (but no money!!)

Claire from Canada




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Re: Venting!
Re: Re: Venting! -- Claire from Canada Top of thread Archive
Posted by: Kathleen
03/19/2004, 10:00:07


Hi, Claire. I included my email - maybe we can connect that way some time. I live in North Dakota, so have actually traveled to Canada often, however, never to Ontario. It is on my list of things to do. My employer has also been wonderful. I just started this job in June 2003 after traveling for my consulting business became more than I wanted to deal with. Right after I started my eyes got to the worst they've ever been and my boss has never questioned any time I need to take off or why sometimes I just can't handle lights in my office, etc. We have a great disability program through work, so I am really lucky. My kids are a little older (17 and 14) but we still have college years ahead and I really want to keep working till they are done.



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