Re: Scared
Hi Barbara,I'm glad to came here with your fear. I hadn't driven for 3 years and then I started getting botox shots last November and I was terrified to drive again. But now, the more I do it, the more confident I am, although I am realizing that I have to be extra cautious because I don't always see what's coming from the sides. I did have an accident in June but no one got hurt except my pride. Good luck and keep us posted. Dee in OR
Re: Scared
Re : Scared --- barbara hanratty
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| Posted by June in Toronto ® (June Floyd,June in Toronto), Sep 08,2001,13:47 |
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Been there, done that, Barbara - not much fun is it? Is there anyway you can go by public transportation or with a friend? I'm glad you posted your thoughts as we can all understand where you are coming from.
Take careJune in Toronto
Re: Scared
Well, yes, you have reason to be scared when you can't see long enough or often enough and pose a threat to others and yourself. But really, you have to make some changes in your life to compensate for your condition, and while there may be grief over the loss of your freedom, you are still in control of your life and with proper medical treatment should be able to resume most of your activities. You should be proud that you didn't give in to the temptation to drive!Go ahead and grieve. There is no fear in grief, only anger and frustration. And eventually, acceptance. Take what you can get and move forward. --- Lynn
Re: Scared
A good place to come with our fears and questions. I'm glad you didn't force yourself out the door and into your car; it doesn't sound like you were ready for that today. I can understand the feeling very well. There is no public transportation here whatsoever, so I have to force myself to drive much more often than I'm comfortable doing. There is a limit to how many favors one can ask of friends.Try e-Bay for shopping ... it's fun! Sally in North Idaho
Re: Scared
Hi Barbara,
I, too, enjoyed shopping by myself. It was always kind of relaxing and just a fun thing to do. It's been a very long time since I have done that. Sometimes I think that I could get there, but then I think, how long should I stay. Thirty minutes, an hour, then I have to drive home. What happens if I start having problems after I get into the store or the mall? Do I risk driving myself home or do I call somebody? That's why I haven't even attempted it in over 2 years. The independence has been taken away in that respect. I don't want to hurt anyone either. It is sad and I still get sad about it but it doesn't bother me as much as it used to.The things that still really bother me and that I still grieve over are things that I would like to do for my family or plan to do and then can't. Those things still slap me in the face at times and really make me feel sorry for myself. I'm glad that you felt like you could come here and write it down. We really do understand and there will always be someone here for you. You are allowed to have pity parties. I've really had a hard time the past two Christmases as I used to love to go buy things for my family-little surprises-just by shopping and seeing something that reminded me of them or something funny or crazy. That was my Christmas present to myself. I have grieved over that the past two years. Things do change but for what ever reason it does seem to get easier-or at least it has for me. Hang in there and talk to us. We all love to share our feelings about things. Shirley in AR.
Re: Scared
Hi Shirley,
You described my feelings so accurately. Did you sneak a peak at my journal? I guess once you've "been there", you don't forget.
I've managed to reach age 57 without developing any major hobbies.
Always kept pretty busy with four kids, and a full time job as
manager in our family business. However,shopping has always been a way to relax.
I'll just have to find a new way. I'm usually a perennial Beginner at Yoga - maybe this year I'll make it to Intermediate.
Thanks for your kind words!
Barb in NY--modified by barbara hanratty at Sun, Sep 09, 2001, 20:05:08
Re: Scared/ I'm so sorry
Barbara,
I am so very sorry if I said anything to mislead you.
It has taken me 8yrs. to get to this point.
The first 2 yrs. of BEB I was in bed and became a
basket case. I never thought I would have any type
of life again.
My recovery didn't start until I hit rock bottom.
I had to slowly climb my way back.
I just try my best to try and help others from giving
up hope by passing on things that have helped me.
I was gripped and paralyzed with every imaginable fear.
I wish I knew there were others out there at that time, just to reassure me that I wasn't crazy. And with coping skills, I would be able to manage.
This is why I feel this BB is such a blessing.
I thought I was never going to drive again. I thought my dog would have to be my seeing eye dog.
Up until last year there were many times I had to stop driving.
I had to make lifestyle changes. It has taken me a lot of work to get
to where I am today. I know it can all turn around in a snap, especially
if I allowed myself, body or mind to get stressed out.
You have every right to grieve and cry. Let it all out. Just don't stay stuck in that place. There will be many times of crying.
Don't ever stop hoping, don't ever stop praying.
I'm glad to hear the tapes did help you.
Use whatever helps you as tools to see that BEB is
not controlling you.
Please keep posting, you have the support of the most
wonderful bunch of caring friends, who will cry when you cry and laugh when you laugh. Because we really do care.
Big Hugs,
Mindy in NY
Re: Scared/ I'm so sorry
Hi Mindy,
Please don't be sorry! You are an inspiration to me, and I know to many others. I always look for your posts. I have a long way to go, I know, to gain your strength, and to accept this "new me". A supportive husband and family help me tremendously, but I want all of you on the Bulletin Board to know how much I appreciate what you and the BEBRF have done for me. Without you all I don't know where I'd be. Probably wouldn't even be diagnosed yet. Surely wouldn't have an appointment with Dr.Bressman. Although I don't post that often, I check in almost every day. I've learned so much! Many, many thanks to you all!Barb in NY, where I've just spent a beautiful day on my son's boat. And I'm complaining????!!!!!!
Re: Scared
Hi Barb,
Whew :-) You sound so much better today, I'm really
glad. And I'm very happy to see you have gained support here.
When are you going to see Dr.Bressman?
Where in NY do you live?
Mindy in NY
Re: Scared
Hi Mindy,
You're right. I am better. After a really bad eye day on Sat (one eye closed all the time), I dreaded going out on my son's boat yesterday (the sun!). But I put on my visor and Sunshades, and had a relaxing day enjoying the beautiful weather and my granddaughters (ages 6 yrs and 8 mos)I will see Dr Bressman on 10/30. Made the appointment in March,after I got first package from BEBRF. Didn't think I'd need her at that time, but made the appointment anyway. So glad I did! Have had some bad
experiences with local doctors here on Long Island. In June, when I was really desparate, I got nervy, and e-mailed Dr. Bressman to ask if it would be OK to get Botox from Dr. Bosniak (another BEBRF recommendation), or if she thought I should wait to meet with her. Never thought see would reply. Well she did! She e-mailed my office address, and her reply brought me and two other grown women to tears. Just to find out that a doctor really cared! She was so kind! and OK'd the Botox. Dr Bosniak is a nice guy, and he didn't hurt me. I was a little gun shy, after having just had an EMG (nerve conduction test)by a ghoulish neurologist. Unfortunately, the Botox has given me only two days of relief so far, but I know it takes time. Speaking of time, I've taken enough of yours. I'm off to work now.
Thanks for all!
Barb
join the club of "Feel the fear and do it anyway"
Glad you posted and got such good support from people here....they are like that you know. You will find that each day is a new day and symptoms are up and down. Surprisingly many of us notice we are better when our kids and grandkids are around. Now later we may collapse with exhaustion, but while we are with them our symptoms are often better or we are more determined to hide them or we get lost in them and symptoms are pushed back or as some have said "we rise to the occasion". Which might sound like all this stuff is in our head and we can control it, which is absolutely wrong from the standpoint that it is not real and we make this crazy thing up in the first place. It just means we are tough as nails and we can focus on certain things and trick the part of the brain that causes our symptoms....we can keep this up only so long. When I work in my yard I can get really lost in what I'm doing and feel almost normal for periods of time. I pay for it dearly if I don't limit my time and find a balance between doing and resting. Not being able to drive as I use to really burns me up sometimes because it represents so much of my independence/dependence. But I'm getting better at going with the flow and enjoying the days that are better and getting through the days that are harder. Hope today is a good day.
--modified by Delaine Inman at Mon, Sep 10, 2001, 21:18:23
Re: join the club of "Feel the fear and do it anyway"
Delaine, I printed your post on how the grandchildren make us feel better which might sound like this is all in our head and we can control it etc. etc. A really good explanation to give to unbelievers. Ann D.
Re: join the club of "Feel the fear and do it anyway"
I don't think there was anything as frustrating as
unbelievers diagnosing me as far as control vs. in our head. It made me so depressed.
I was relieved to hear so many others can keep their
eyes opened at the doctor's office.
I was able to play video games for hours, that was about the only thing I could do at that time.
Mindy in NY
Re: join the club of "Feel the fear and do it anyway"
Hi Delaine,
Just tonight I was talking to my sister, trying to explain for the umpteenth time about having no symptoms at the doctor's office, or while talking or concentrating on something new. She listens very QUIETLY, if you know what I mean. I know that although she loves me, and wants to support me, she has her doubts. I really don't blame her, but for some reason I seem to need to justify this condition. What do
you all say in a situation like this?Barb, who is sick of defending herself
Re: join the club of "Feel the fear and do it anyway"
Most people are probably not going to understand unless they live with you and then they may not really get it. I think that my immediate family has a real good understanding of it but no one else really does and I'm always a bit paranoid around other people because of this. That is why I enjoy myself so much at the yearly conferences. All those people "get it" or they are trying to.
I have a brother that calls me routinely and he always asks how my eyes are doing and if they are better, yet. He is a real sweetheart and I love him too death but I really don't know how to answer him. Whatever I say doesn't seem to be right or what he wants to hear.
I generally don't try to go into much detail about my eyes to anyone unless they question me. Just real basic stuff. I also let people know that the symptoms can be so weird and unpredictable that it is a good thing that I have this bulletin board and can share my experiences and hear of others as otherwise I probably would think that I was truly crazy. I don't know if that makes them feel better or not but it does me and it is really very true. I feel that this bb is the reason that I cope as well as I do with this disorder.Shirley in AR. Thankful for all of you
Re: join the club of "Feel the fear and do it anyway"
My family and friends are very supportive, and I try to make light of the fact that I am special - I have this wierd, rare condition. "Watch out, I may run you over!" I also keep on hand a stack of the yellow pamphlets from BEBRF that I give to people who seem to be really interested (and some doctors who never heard of it). Sometimes I surreptitiously (are you looking up that spelling?) drop a pamphlet on the reading table in a doctor's office, too. Spread the word !! Mary
Re: join the club of "Feel the fear and do it anyway"
I worked with a therapist once who called irrational thoughts, stinking thinking. That we feel the need to justify why we have good moments or good days is really an old need that many of us have to be people pleasers. I have it ...but I'm getting better at realizing that there is no way people who don't have this....not even the best doctors...can understand this weird disorder we live with on a day to day basis. Only other people who have it understand or other people with chronic disorders and disabilities. I still let it push my buttons or hurt my feelings sometimes, then I realize....I control the door to the buttons and try to remember there is no way anyone can know what is like who doesn't have it and I forgive them for their insensitivity or that they really don't want to know how I am doing even when they ask. Their eyes glaze over and I can tell. So when people ask I usually say...Oh I'm about the same...up and down. Most of my family and true friends who are around me long enough see me have the bad moments and bad days. Give your family and friends brochures. We have nothing to be ashamed of or guilty about, we are who we are, and we have what we have and we make the best of it and keep looking for what works for us. It is a brain disorder and we didn't ask for it so we have no reason to justify it.
Re: Scared
It had been over 4 months since I had been shopping and a friend said she'd like to take me and I knew she meant it but I had always shopped alone and I didn't know how to shop for clothes with someone else. How long do you stay at one section? Do you stay close together? Do you try things on and how many? This probably changes from person to person. I enjoyed my friends company and got an idea of what is out there but didn't buy anything but knew what to look for the next time I could see and drive.
I did all my Christmas shopping by internet. Not as much fun but OK. Ann D.
Re: Shopping Alone
Hey Ann, I always thought that I was the strange one as I never really liked to shop with someone else. I always thought that girls and women loved to shop together. I, too, was concerned about what does the other person want to look at, how long do they want to stay, etc. just like you. I really couldn't enjoy my shopping experience if someone else was along. I kept worrying about the other person. I do enjoy visiting with others but not while I'm shopping.Shirley in AR.
Re: Shopping Alone
Hi Ann & Shirley,
For me there are three different types of shopping: WITH FRIENDS- when you just sort of mosy along and enjoy looking and touching, and then have lunch; ALONE,on a MISSION, to find that special gift, or clothes that look and fit just right; WITH DAUGHTER OR BEST FRIEND on an emergency run, where they feed clothes of varying sizes into the dressing room relentlessly, until the needed outfit is found!To look on the bright side, not shopping saves me a lot of money! Barb in NY where I'll keep trying to spend my money.
Re: Shopping Olympics
Wouldn't it be fun if there were Shopping Olympics? I'd put money on my Mom (Barbara) for a gold in any of the above 3 catagories. That sure would beat Monday night football.
Kerry in CT who misses shopping with her Mom way too much!!!
Re: Shopping and daughters
Kerry, it is really nice to see a daughter being so supportive of their mom. You're a good kid even though I'm sure that you are all grown up, now. I love my sons too death but I would have liked to have had a daughter, also. Someone that I could do "girl" things with.
Like your mom, I am saving lots of money this way. And since my hubby is also my best friend and he loathes shopping, it doesn't make for a fun shopping experience. He is trying to enjoy it more but trying to have fun shopping also puts a damper on things.Shirley in AR. whose husband was going to take her shopping this morning but my eyes never cooperated enough for me to want to try it.
--modified by Shirley-Arkansas-USA at Mon, Sep 10, 2001, 19:33:51
Re: Precious presents
Oh well, Shirley - Sorry your eyes are acting up today - hope they "behave" better tomorrow - and you are able to hit some good sales.
I realize that one of the hardest parts of BEB is not being able to plan - Today - tomorrow - the future. What a huge challenge! Or maybe it is a gift that makes us appreciate the "precious present". I hope so.
Kerry in CT :)
Re: Shopping Alone
I guess there are a several of us "strange ones." I like shopping alone best, but shopping with my daughter is okay, too. I think it is something we've done since she was little and we're comfortable with each other's shopping habits. It is harder on the pocketbook when I shop with her, though. ;-) I'm not a social shopper. If I don't have an agenda, I'd rather do something else.Virginia in AL, who still shops alone. It's one thing I won't ask Carl to do until I am desperate.
Re: Shopping Alone
Me, too. I can never get anything done if I am doodling along shopping with someone else who is looking at this and that. I want to do it myself and get on with life.Sally
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