Folks:I'm signing in now, not as the Moderator for this Bulletin Board but as a regular person that has this disorder.
It is so important that we not let a bad day get us down. When you've fallen ... Get up!
Yesterday, I had one of those days that brings you to your knees. While shopping in a large store with my wrap around sunglasses on, my eyes did a complete shutdown. Luckily my husband and I use handheld radios for communication and just this type of scenario. My eyes had been warning me that I'd shopped under bright lights too long but I continued anyway.
Coming out of a corridor I simply could not see. After contacting my husband and being led out the door, I spent the trip home with eyes tightly clenched. The rest of the evening all shades were drawn and a feeling as if my eyes had been scalded prevailed.
Eyes are doing much better today but still are sore.
Never give up folks, do what you can when you can .... and when you can't ... do something else! My watchwords for dealing with BEB/Dystonia.
Take care and know that I DO understand.
Judy
Re: When you've fallen ... Get Up!
You don't know how much I appriaciate this site. And I reallly mean it. I don't know where I would be if I hadn't found you, ALL OF YOU!. Thank The Lord we have other people we can communicate with. And now I know I will fall and all I can do is GET UP , CUS THE LORD PUT ME HERE AND I'M HERE TILL HE TAKES ME OUT. I love all of you and I pray for all of us.
becca
Re: When you've fallen ... Get Up!
Hi Judy, You have a good attitude toward life. Hope you are feeling better. Cliff
Re: When you've fallen ... Get Up!
Thanks for sharing your "downfalls," Judy. I've often thought that the radios you and your husband use would be very handy, but I am usually alone when shopping. Situtations such as you just had can be very frightening and not easily understood by others.I like your words to live by. We either get up and get going again, or we stay down. It's up to us to make the choice. I hope you're feeling lots better now. Sally in North Idaho where it's raining ... much easier on the eyes than sunlight (or fluorescent!).
Re: When you've fallen ... Get Up!
i've had my eyes shut down and clench shut several times for over an hour. It IS a completely helpless feeling!
Re: When you've fallen ... Get Up!
Hope you are having a better day. Yes it is important to listen to our body telling us it is time to rest. Thank God you had your husband there and your radios and got home safely. Thanks for sharing.
Re: When you've fallen ... Get Up!
Judy, glad you managed ok and got home safe and sound. Better days ahead for you I pray.June in Toronto
Re:Wonderful words of advice
Judy, Thanks for sharing with us. Your words of advice are well taken. We all have those days. I've had a few recently. I can usually manage to dig my way out or just give in to it and close my eyes and listen to some good music. Things do get better. I'm glad that my family deals with it as well as they do. My kids do it with a sense of humor. My husband deals with it in a variety of ways on any given day. And sometimes, just doesn't deal with it. I think that it is much harder on my husband than on my sons. Which actually, makes a lot of sense.
I'm glad that you are here.Shirley in AR.
Re: When you've fallen ... Get Up!
What a story, Judy. I commend you for your courage and positive
attitude. Getting all upset inside probably would have aggravated
the situation even more although sounds like it was pretty serious.
I have not yet experienced such a shut-down and am hoping I never
will. Everything in life is about risk, our perceptions of the circumstances. Thanks for the sharing and giving of yourself that you
always do for us. You are an open book--wonderful one at that!!!
Joanne M. San Diego, CA
Re: When you've fallen ... Get Up!
Those episodes can be sooo frightening. Now that I don't work and don't venture out much I am better but I remember when I was working and had to drive home in rush hour traffic. My kids were 4 and 1 and I was trying to get home after 45 minutes on the road. My husband was at the fire station. I would have several minutes that my eyes were clenched shut and I couldn't open them while I was on the road. That made the spasm in my throat worse so I was also dry heaving in my car as well with 2 kids in the back seat. I prayed like I had never prayed before. We obviously made it home safe and sound and then I cried. I just took the kids to the mall on Friday evening to shop for father's day. I made the 5 mile drive great (botox in full swing after 3 weeks and doing unusually well) so I was pumped. After 2 hours at the mall I was feeling the fatigue and we went home. My spasms were alot worse trying to drive home. I don't know if I just over did it or if the lights in the stores affect me more than I realized. I don't wear glasses in the store but maybe I should begin. Thanks for always being there to share your experiences and to listen to ours.
|