Re: Bumping into others at work
Hi Coleen,
You are in a difficult situation. Try to let as many co-workers know about your disorder as you can and that you are getting treatment for it but that it is not perfect and there will be times when your eyes will still close and may not open again for a few seconds (plenty of time to crash into someone). You might get some of the little business size cards from the BEBRF that explain in very simple terms what the disorder is and does and hand them out to everyone. They are free for the asking. Meanwhile, try to stay to the right of "traffic" and close to a wall or desks or cubicles that you can run your hand along the side of. It is very difficult to learn to stop when your eyes close but it really is the best thing to do. I'm better at it after 2 years but still haven't totally mastered it. Of course, when you stop suddenly, you also run the risk of being rear-ended. Preferable though, than a "head on collision". And besides that rear-end collisions are not your fault, the person behind you must have been following too closely or speeding or not paying attention. It can be blamed on numerous things. They may even have been talking on their cell phone.
I'm not trying to make light of your situation but hopefully you can see the humor in this and believe me, we all need a sense of humor to get through the rough times.
Your co-workers should figure things out pretty quickly and probably will watch out for you, especially if they are aware of the situation.
The blinking or eye closure is probably going to happen at times even with the Botox. You will probably notice this more under times of stress or people talking to you or you meeting someone head on.What kind of questions do you want to ask your Neuro-ophthalmologists?
Did the botox take care of most of your spasms? It is always good to keep a daily journal of your symptoms and or problems that you may have and how long you think that the botox is lasting. Are you going in again for botox or just a check-up? You should know what dosage of botox you are getting (number of units) and have him draw you a diagram of where he is giving you the injections each time. Shirley in AR.
Re: Bumping into others at work
Coleen - I have the same problem. I fit right in with 1st graders who also bump into each other all day long! I also bought a new Volvo wagon for my own safety. My route to work is in the country through farm machinery, construction trucks, and a couple of railroad tracks! I want to be prepared!
Shelley in California
Re: Bumping into others at work
Shelley,Where in California are you? I'm from L.A. and relocated to Pennsylvania about 9 years ago. I can relate to going through the farm country here, only we get behind Amish buggies. They are so cool to see. I love their colorful outfits. Gee if I were Amish, the horse could do the driving for me. His eyes I'm sure would stay open a lot better than mine. Coleen in Pennsylvania where it is going to be cold and windy tomorrow. I saw the comments about wind and air conditioning. I can't take either of them. Family is home....gotta go.
Re: Bumping into others at work
I'm in Bakersfield, Coleen. I have seen a lot of Amish, though, because my in-laws are in Bloomington, IN and I've spent a lot of vacations in the mid-west. How peaceful for you. Driving is definitely the worst part. I have to steer with one hand, and hold one eye open with the other. If it gets TOO bad, my husband drives me. I just refuse to give up my job.
Shelley
Re: Bumping into others at work/educating others
Call, email or write to BEBRF and ask for business size cards with BEB info. They are free and great to give to friends, family, even strangers who stare or look like they might have BEB, too. Also Shirley gave you some really good advice and one of the best tips is to learn to have a sense of humor when you feel so sensitive about the situation. Laugh and the whole world laughs with you....withdraw and you are just isolated and feel more vulunerable. You can get a cane of some other color other than white if that would make you feel more secure and remind others that, "Hey folks I'm coming through." My heart goes out to anyone who has this disorder and still works. I've said it before, You deserve a medal. I am blessed that I had circumstances that allowed me to do what was best for me. I've learned to live despite the fact I have this disorder, but I could not work outside the home and I certainly couldn't do my job as a nurse. Good luck.
Re: Bumping into others at work
This has happened to me a lot. Shirley and Delaine have offered very good suggestions. I just usually say something like, "Sorry, I'm walking around with my eyes closed." (true) If they are in a hurry as you say, they will just continue on their way. Maybe you could wear one of the new BEB Tshirts if you have a casual day :-)) My worst collision was at home with my husband! His shoulder collided with my eye badly enough to make it black and blue for several days!
I agree, a sense of humor is the best defense.
Cynthia
Re: Bumping into others at work
I had the same problem when I was working. I was a cpa and worked with beb for 4 years before calling it quits. I worked on the computer alot and my eyes would open while I focused but as soon as I would leave my office the spasms would intensify. I almost ran into someone carrying a cup of coffee once. Most of the people I worked with did not know about my condition until I quit 1 1/2 years ago so I would just act like I was not paying attention. I remember bumping into walls at home while carrying around my baby-no wonder she has such a hard head at the age of 6(as of tomorrow!). I'm sure a sense of humor is the right medicine but I will admit that I did not have one at the time. I was in my 20's and embarrassed at my disorder and the fewer people who knew the better. I no longer feel that way which is why I agreed to Ladies Home Journal article and news story. Even when botox is working my eyes still close alot and I'm not sure there is any way around it.
Re: Bumping into others at work
A sense of humor ... absolutely essential!!! All the advice you have been given above is great.Keeping notes is a good idea, and one thing I quite often do now is to write a brief letter to my neurologist in between visits. In this, I let him know what has been going on since my last injections ... this time, for example, my left eye continues to be half closed and prefers to completely close after one month, and the feeling of being very tired lasted several more days than usual after the injections. By sending a letter, the doctor can read it ahead of time and be thinking of possible changes or questions to ask me. Also, I have a habit of forgetting to take the notes with me, so this way they are in my file. Keep smiling and asking questions. We'll try to be helpful. Sally in North Idaho
Re: keeping doctor informed
Sally,
I do the same thing and even enclose a photo or two. Especially since I have been having the injections 350 miles away and can't just run into the office if I have a problem, I do try to keep him up to date on how the latest set of injections is working. He usually sends me back a note giving me his opinion of my situation.
Virginia in AL, sporting a lovely bruise on my knee from walking into a transformer at the Garden.
Re: keeping doctor informed
I really like the letter writing idea before a visit, Sally and Virginia. That's great. Dummy here, never thought of that. That is an excellent way to let them know ahead of time and it will be right there in your chart (or should be) and something for both of you to go by. Your doctor will, indeed, know what needs to be addressed at the visit and may actually have thought about it ahead of time.Shirley in AR. sporting bruise to Right upper thigh area. Remember hitting something but don't remember what anymore-CRS-drug induced, I'm sure.
Re: Bumping into others at work
coleen, sorry about your dilemma, but let me tell you my story.
I do not work out of the home; trying to do things around the home is a chore in itself sometimes. However, I do have a white cane that has a red tip at the bottom. I am not legally blind; I'm functionally blind, just like you. From what I was told, (and what do I know) the all white cane is obtained when you have training for using it and you have to qualify for that. Possibly the qualification is legal blindness. However, I received my cane from Independent Living Group and it's purpose is to alert others to the fact that you do have a visual problem. It also is to help you with stability when you almost fall over cause you can't see good. it also helps you navigate without running into everything while at the same time alerts others, in essence, "get out of my way, I'm coming through".
Try to get in touch with the Independent Living Group. Maybe type that in on the internet to find how to reach them. I can't imagine them not being in every state. If you don't have any luck, email me at gea2341@home.com and I will ask the people who helped me. But let me know what state you are in.good luck, and if I can help you find any better luck, let me know.
graceanne in port orchard who uses the mostly white cane and it helps
Re: Bumping into others at work
Coleen, bumping into people at work sure does bring back memories. Prior to my getting disability, it used to be a big joke around the office. It even got to the point that the HR department would warn new employees to be on the alert when they were around my office area. What made it worse was that I was a class "A" type individual and moved pretty quickly. There were not too many people who didn't have an accident with me involved. It probably helped me in the long run getting disability as I guess that I could have been considered dangerous to myself and others. My only advice is to warn people in advance and hope for the best...Alan
Re: Bumping into others at work
Maybe we should equip ourselves with one of those back-up horns like they use on fork lifts and heavy equipment! We could reverse it to sound off when we are moving forward to alert anyone in our pathway.Sally in North Idaho where it is sunny and I'm thankful that I do not have to drive anywhere today.
Re: Bumping into others at work
Good solution Sally...beeping sound with flashing lights. You know what we have is not a curse or something to be ashamed of....it is just one of many things people can have...like heart disease, diabetes, MS or any kind of disability...we have twitches and spasms and we run into things. We're not doing this on purpose and we have nothing to hide. My coworkers all knew as soon as I got a brochure, I took it to work and passed it around all the way up to my supervisor. They were all very supportive and compassionate. It was my supervisor who suggested I take the family medical leave for 30 days if I needed it. She sent me to Human Resources to have them explain the steps for medical leave and short and long term disability and she filled out all the paperwork promptly when it was sent to her. Everyone was great. I stay black and blue and can't even remember when I did it and my dog still gets stepped on from time to time, but she just moves and forgives me. Oh well.
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