Re: sleep while eyes are down
I WANT TO ADD SOMETHING.I'M 42 AND HAVE A HUSBAND & 2 SONS.
OF COURSE I HAVE HOUSEWORK, BUT WHEN MY
EYES ARE DOWN I CAN'T SEEM TO ENJOY ANYTHING,
EVEN ATTEMPTING TO WANT MY KIDS SPORTS' GAMES. I KNOW I SHOULD BE THANKFUL THAT I'M NOT BLIND
BUT I'M HAVING A HARD TIME COPING INBETWEEN
BOTOX INJECTIONS. MY HUSBAND ALWAYS REMINDS
ME HOW LUCKLY I AM TO HAVE "UP" TIMES WITH THE
BOTOX. I SLEEP TO COPE WHILE MY HUSBAND IS
AT WORK AND THE KIDS ARE AT SCHOOL. HOW IS ANYONE PRODUCTIVE WHEN THEIR EYES ARE
DOWN. MY HUSBAND SAYS I WILL ADJUST SOMEDAY.
I'VE ONLY HAD IT BAD 7 MONTHS. RHONDA COUTANT IN DALLAS
Re: sleep while eyes are down
Rhonda,
I've had this disorder over 3 years now and some days sleeping is still the best way for me to handle it.Is there any chance that you could have your injections sooner, so you don't have as much down time? Or maybe the doctor could increase the dosage some to keep you functioning a little longer. Are you taking any meds? Sometimes they will help you through the rough times. Talk to your doctor and see if he can't help you work out some way to minimize the bad times. Virginia in AL
Re: sleep while eyes are down
Hi Rhoda,
I'm sorry you are feeling so down. I'm a Type-A kinda person, and I first developed BEB at 50, during a particularly stressful time when I was only getting a few hours sleep each night. I was extremely lethargic, not to mention depressed. I slept a lot. I was diagnosed with Chronic Fatigue Syndrome and treated with a bunch of oriental herbs and supplements, along with acupuncture. By the time I got the BEB diagnosis, I had actually gotten a little better in the fatigue department, but I still find I need more rest than I used to. Meanwhile, when my eyes are driving me nuts, I listen to books on tape, or sit by the fire and drift, or soak in the hot tub, or talk on the phone, or do stretching or a stairmaster, all with eyes closed. I had to decide that "good enough" would do when it came to housework -- sometimes I do a load of wash one day, put it in the dryer the next, and leave the clean laundry in the basket for another day or two before i get it put away. I pay a cleaning crew to come once a month, and in between, I do a minimal amount of housework. I only have so much energy, and to me, cleaning house is not as high a priority as some other things. I'm fortunate not to have little kids anymore. I think if I did, I might have to arrange for someone to take them more often, just so I could rest. Do you have high expectations for yourself, or is someone else expecting you to be more energetic? Hope you are feeling better. And now I relly must go to bed -- it's now about 4AM - back to my old ways!
jj
Re: sleep while eyes are down
I guess the good thing about having a 3 year old at home is I don't have down time to sleep, although I sure want to! I have begun to listen to books on tape and I really LOVE it! As a "used to be avid reader" I refused to try listening until this summer and I really like it. I receive everything free of charge from the Library for the Blind. I just requested "Icy Sparks" from the Oprah Book Club about a young girl with Tourettes. It talks about how she coped with being different in a world that didn't understand her illness. I think it will help me because I can identify. I take klonopin 1/4 tablet 4 times a day. It seems to help some. I think I am going to try Parsitan (available only in Canada) when I see my neuro again mid January. Are you on any meds? I also do yoga from videos at home. After my hearing yesterday and the thoughts of having no license I had a horrendous headache and was extremely depressed. After laying on my bed in the dark for 2 hours I decided to do yoga. It helped ease my headache and made me think a little clearer about my situation and I knew that God would provide no matter what. I also had this thought that if my license is revoked then maybe it would be God's way of protecting myself and my kids from a serious accident. Please email me any time you need to. Kelly
Re: sleep while eyes are down
Hi Rhonda, I'm new to this condition but I'm learning fast. I know the Botox works a little different on each of us. On my bad days I try and stay busy with exercise, home projects anything to keep me in motion. My eyes are almost normal during this time frame. TV is out so I picked up a guitar and I'm attempting to learn how to play it.It's all good eye time for me. Some things I can do and some things I can't????????go figure Mike
Re: sleep while eyes are down
In one of the current issues of People Magazine with Jennifer Lopez on the cover, there is an article in the back about a woman who has lost her sight due to a different but also rare disease. Her husband bought her some water color paints and she tried painting to "shut him up." It turns out that even though she is clinically blind, she can paint some amazingly realistic works. They are truly beautiful and the article is inspiring.
I hope this helps a bit.
:) Kerry in CT
Re: sleep while eyes are down
Hi Rhonda...sounds like you're having some rough days...I'm so sorry. It must be very difficult for you. I have BEB and Meige, and my problem began in my mid-40's although I never found out what it was I had until little over a year ago. I think it's much harder on younger people who expect so much of themselves. Are you maybe using sleep as an escape? That used to be what I did when things got rough for me, and let me tell you from personal experience, it doesn't help much. It's better to find some way to get enjoyment, if for no other reason than to get your mind off of the problem temporarily, and on something else that might even make you smile. I've had just about a year's experience on Botox, and I'm finding that coping is getting easier for me as time goes on. The problem isn't going away, but I am getting less upset about it. During my "good" times, I function quite well. Never 100%, but enough for me to assume quite a normal lifestyle. I can drive, shop--do most anything I want to. I'm 62, but strong and healthy otherwise, and you might even find me climbing up on the roof, or building something in my backyard. But on "bad" days, I'm bumping into walls, tripping over my feet, can't drive, unable to do housework, avoiding social contact, etc, etc, etc. But I keep reminding myself that before Botox, I was feeling that way ALL the time, and I didn't even know why. I'm scheduled for injections every 3 months, and I'm finding that the effects are lasting usually only about 2 to 2-1/2 months. So, out of 90 days, 60 to 75 are good ones, and the rest are difficult. I had one occasion over the past year when the shots failed completely (due to stress, I think) and I was ready to jump out of a window. I hate the unpredictable effects, but I know that the doctor is still experimenting to find the very best locations and dosage, so I'm remaining patient...and, I'm going to keep hanging onto the notion that SOMEBODY out there is going to find a good cure for this real soon. In the meantime, I intend to keep on top of it as much as possible to try and control it so that it doesn't start to control me. Here's some of my own strategy that seems to be working for me: 1} Without wimping out, and in graphic terms, I've made it quite clear to my family and friends exactly what BEB and Meige is...that I am still the same person, (even though I'm acting strangely at times)... but that I am limited in what I'm able to do during my "bad" times. Also, that I might have to say "no" to some things that they want or expect me to do. It's beginning to amaze me how helpful and understanding and caring they've become. Sometimes they even try to pamper me, and I have to let them know that I'm aware of what I can and can't do, and that they can be sure I won't over-extend myself. 2) During my "good" days, I stay as active as I can. I catch up with my housework and try hard to plan ahead to get things done and in good order for when I have my "bad" days. That way, when the bad days come (and they always do), I tend to have less stress, and that helps. 3) I have many "work alone" projects. I love to create things. I re-finish furniture, restore statues, sketch and paint, do woodworking, and so I have many outlets. Of course when my eyes are acting up, I know enough to put the power tools and the paintbrushes away. I do consider myself lucky for the "good" times I have, but I'm learning to appreciate even the "bad" times because they afford me an excuse to slow down and pamper myself a bit. 4) During my "bad" times, I will listen more often to my relaxation tapes, and music, give myself extra time in the shower and try to keep myself looking good. I've learned to enjoy being chauffeured around by my husband during these times. I do avoid social events, and I do get to bed earlier than usual, and will take an occasional afternoon nap, but most important, I try very hard to AVOID THINKING or dwelling on the problem. In my mind I'll plan projects to do when my "good time" comes around, and I like to talk to friends on the phone, so I use this time to touch bases with people I don't see every day. On nice days I'll go for a s-l-o-w walk, or I'll spend some time in the backyard if the weather is comfortable. Not the most exciting life...but it is kind of relaxing, and I deserve it! All that sounds great, doesn't it? Well, believe me, it would be nice if it worked all of the time, but of course it doesn't. I continue to HATE this problem, and wonder why I've been blessed with it, and I'm still struggling a lot. I'm caregiver for my 94-year-old dad, and that can cause a lot of stress. I do have negative thoughts creeping in all the time, but I don't intend to give up, because this is the only life I'm going to get, and I intend to try and enjoy every minute of it. Hope you're feeling better soon, Rhonda. In the meantime,
hugs...... Rita
Re: sleep while eyes are down
it is ironic that after we finally get our eyes open, we are too exhausted to do much. i clean up household messes, ( large motor movements !), attend to my pets' needs, try to kick myself and make myself get some exercise, in otherwords, STRUGGLE to get things done. IF i'm lucky to have time and my eyes are reasonably good, i paint. i rest alot also , even when my eyes are good. i can't do it any other way. sometimes i can't even sleep, tho i am extremely tired because my mind won't let me.
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