Blepharospasm Bulletin Board

Dealing with a Chronic Disorder ...
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Posted by: Moderator-JB
04/04/2004, 11:21:57


Friends,

Many times people want to curl up and hide after trying to deal with Blepharospasm/Dystonia.

You are not alone, we each fight this feeling.
It is reasonable for us to go through what is called Situational Depression (meaning it is caused by a specific incident). Then again, since BEB/Dystonia is a Central nervous system problem, your whole set of feelings, day to day ups and downs, etc. are affected.

We go through many stages such as denial, anger, acceptance to name a few. These are often repeated in no special order.

I'd like to have some comments from others on their coping strategies.

Take care,

Judy
Moderator (who's computer has been down and out for a few, just married a daughter off last night, fostering puppies, etc.......)




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Re: Dealing with a Chronic Disorder ...
Re: Dealing with a Chronic Disorder ... -- Moderator-JB Top of thread Archive
Posted by: Kathleen
04/05/2004, 12:37:56


I don't really have much to share in the line of coping strategies, as I'm still trying to adjust to the fact that this is not likely to go away. I will appreciate any advice that others are able to post here. I spent the last few months since being diagnosed alternating between extreme anger that I have this and then despair about the way it has and will continue to change my life. I have found it helpful to walk away from the things (at least temporarily) I can't do well any longer and get myself occupied doing something I can. For example, photography has long been a passion of mine and now I find it very difficult to get pictures composed the way my mind sees them because my eyes can no longer help. So, I've been concentrating more on another hobby - gardening, both indoors and out. I have also noticed that I have more difficulty concentrating and my nearly photographic memory is significantly "underexposed" some days. I'm not sure if this is because of the difficulty seeing, the not so well established adjustment to the disorder, or if it is a symptom of the disorder itself. I find myself writing a lot of notes and making extensive "to-do" lists to keep myself on track.



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Re: Dealing with a Chronic Disorder .../kathleen
Re: Re: Dealing with a Chronic Disorder ... -- Kathleen Top of thread Archive
Posted by: Kathy in Atlanta
04/08/2004, 16:08:50


That is strange; i have always had a photographic memory also. I wonder if there is any correlation? I don't tell this to many people; it is just that so many people comment on how good my memory is that it almost scares me.



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Re: Dealing with a Chronic Disorder .../kathleen
Re: Re: Dealing with a Chronic Disorder .../kathleen -- Kathy in Atlanta Top of thread Archive
Posted by: Kathleen
04/12/2004, 08:12:55


Someday they may find a link. I have always gone at life and work with great gusto and took on many projects and responsibilities. In my 20's and 30's I lived on 3 to 4 hours of sleep a night and did quite well with that, however, my Mom told me if I didn't take time to relax and rest, I would wear myself out at a very early age. I think she may be right. I do know, though, that she worked very very hard all her life and is still going strong at 85, so I'm not sure. I also didn't share how amazingly good my memory was because it made people think I was a real geek. At the 10 year reunion of my college nursing class, though, I received an "award" for being the only member of my class who graduated without ever opening a textbook. If I attended class and listened well, I didn't have to read the books because I remembered things well enough. (Although, on occasion I really did open a book!)


Modified by Kathleen at Mon, Apr 12, 2004, 08:15:16

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Re: Dealing with a Chronic Disorder .../kathleen
Re: Re: Dealing with a Chronic Disorder .../kathleen -- Kathleen Top of thread Archive
Posted by: Kathy in Atlanta
04/14/2004, 06:41:28


I used to just read or look at things and then just visualize them and there would be a picture in my mind I could rely on. It Is sort of weird. I always wonderd if anyone else did this.



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Re: Dealing with a Chronic Disorder .../kathleen
Re: Re: Dealing with a Chronic Disorder .../kathleen -- Kathy in Atlanta Top of thread Archive
Posted by: Lynn Yarbrough
04/18/2004, 18:43:12


I and one of my nieces share a common ability to spell words: when we think about spelling it, we see the entire word in our minds and simply read off the letters. It's called spatial visualization, and it's not a common enough trait. I have a woodworker friend who invents mechanical puzzles; he sees spatial relationships more vividly than anyone else I know. He also has the reputation for being able to recognize 50 different kinds of wood simply by their smell alone. It's amazing what some of these people can do.

--- Lynn




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Re: Dealing with a Chronic Disorder ...
Re: Dealing with a Chronic Disorder ... -- Moderator-JB Top of thread Archive
Posted by: Lyn Down Under
04/07/2004, 20:56:29


Hi Judy and everyone

I have had BEB for about 15 years now.My philosophy is to just get on with life. It is not going to go away, Botox gives me a good result so I live as though there is nothing wrong. I have so many interests and things I like to do that I don't spend a lot of time worrying about something I can do nothing about. I read the BB daily and chat when I can. This way I can keep abreast of what is happening re BEB without obsessing over it.

Only a very few people know I have it and no-one has ever noticed or commented on it - perhaps they have just been polite. I try to have the shots before the previous lot have completely worn off so there is not a great deal of time when I am actually spasming.




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Re: Dealing with a Chronic Disorder ...
Re: Re: Dealing with a Chronic Disorder ... -- Lyn Down Under Top of thread Archive
Posted by: Sally in Idaho
04/10/2004, 00:04:25


Hi Lyn down under,

You are apparently one of the fortunat ones for whom Botox is successful in alleviating all symptoms. Good for you. It is of moderate help to me and has completely worn off by the end of the eight weeks.

I just had my latest injections today and have been really stumbling around for the past couple of weeks. My neurologist is trying different sites, with the theory that changing sites will help stave off immunity of the same nerves being bombarded over and over with the serum. Today and last time (which was fairly effective) he put three of them clear at the edge of my face, almost at the hairline near my ear. Those really stung!!

As far as coping, once I got through the anger stage (which still erupts now and then) I just decided to pare down my activites to ones I could handle comfortably and keep life as normal as possible. I do manage much better if I rest during the day and keep stress down as much as possible.

You must be coming into winter now. Lucky you. It's an early spring here this year.

Sally in Idaho




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Re: Dealing with a Chronic Disorder/Sally ...
Re: Re: Dealing with a Chronic Disorder ... -- Sally in Idaho Top of thread Archive
Posted by: June in Toronto
04/10/2004, 05:41:43


Hi Sally, long time no hear on this bb - but always enjoy your forwards (they keep me laughing). I hope the injection theory your doctor has works for you - even some relief every 8 weeks is worth aiming for. I know how some injections can sting - ouch! I had my injections just over 2 weeks ago and, as usual, now the side effects are very bad. I don't feel a thing for about a week after the inejctions them whammo it starts - luckily this time I don't have as many side effects (no sinus, no double vision, nary a bruise or bleeding or flu-like symptoms - thank The Lord). I only have blurred vision in my right eye - but the multitude of creams/gels and drops I have to use make sure both eyes are blurred constantly:-) I also have gobs of liquid running down my face all the time (I've had that side effect before) - it doesn't help with moisture for the eyes at all, just makes my face painful and red with the constant dabbing - although under-the-eye gel does help. Like you Sally, I need eye rests to cope - but I can look forward to better days when the Botox really helps me. I know am one of the lucky ones and I do count my blessings. I finished my 4th large-print book just before I had the last set of injections - you know how excited I am to be able to read anything again - its such a luxury to be able to do this after 9 years of not reading at all. Things to do change and I pray for all of us that they change for the better. Take care Sally and everybody

June in Toronto




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Re: Dealing with a Chronic Disorder ...
Re: Dealing with a Chronic Disorder ... -- Moderator-JB Top of thread Archive
Posted by: Anna
04/08/2004, 00:17:12


Hi Judy (and all),
Thank you for the opportunity to talk about coping. I have been away from this board for a while but chatted a few times on here and attended the conference in Houston year before last. I was diagnosed June of 2002 (thanks to an article my teenage daughter happened to come across in one of her magazines about rare disorders). I received botox from June until about February of 2003 and have not received any for over a year now nor needed it. I also have been medication free before Christmas of 2002. The symptoms came on fairly quickly though I realize now that I had some symptoms for almost a year but very mild and didn't realize they were symptoms until I had read more on the disorder. At the time I was diagnosed, I was in school full time finishing my degree, working full time with two other part time jobs (as an RN) and raising 2 daughters still at home. My life came to a complete stop (felt like it) after I arrived to work one day and could not open my eyes and had to be driven home... under protest of course!
I wasn't coping well and was feeling devestated, confused, and terrified to say the least. I did take a little over a month off, stopped school temporarily and then went back to work after a month but to only my full time job for a while and amazingly that seemed to help. I would never have believed that I was under stress but I was. Reducing my work and other activities in my life was the hardest thing to do but I realize now how vital it was for my health both physically and mentally. A year later I feel like a different person and things that I thought were important just aren't and I am OK with not being able to do "everything". I've always had a good relationship with my children, family, friends and they were so supportive and understanding and I know that was key to my health as well.
I am at this point 99% back to what I was though I still have mild symptoms (rapid eye blinking and dry eyes) but only noticeable to me on occasion. No one else would even know unless I tell them and those that saw me at my worst (I had Meige and apraxia as well) are amazed.
I don't know that I have any words of wisdom other than to say that this board was immensely helpful in information and support when there is so little information or exposure. Rarely do I even meet a doctor who knows of this disorder in my work environment as an RN. Attending the conference (except for the breakout session the first evening on that Friday which was quite depressing) was also very helpful. I have always been a fairly happy, upbeat person and grateful for the blessings in my life and I am grateful that I have had some respite from this disorder that has tried to invade my life. I just wasn't willing to allow that. To quote Delaine, I always had "hope" that this would be controllable and at this point for me it has been. (thank you for a good article Delaine).
Thank you.
Anna in California.



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Re: Dealing with a Chronic Disorder ...
Re: Dealing with a Chronic Disorder ... -- Moderator-JB Top of thread Archive
Posted by: Kathy in Atlanta
04/08/2004, 16:20:36


well i am in the same lowered botox dosage, same long initial side effects, but it seems to last longer , and i still have the horribly frustrating problem of having my eyes close when i walk, helped somehat by the solar sheilds!! I was getting depressed naturally because of no exercise( no walking and it also much aggravated my arthritis) sooo I am now swimming and i love it!! i have to force myself to do it because it is so much easier doing nothing but i am hoping it will prevent or control my arthritis and my mood is much improved after i do it.
Absolutely pace yourself on what you can do both emotionally and physically! if you are having repeated spasms than try and get extra sleep and eat well. I take B-vitamins frequently and after reading claire's post have upped the magnesium to twice a week, I also found that taking the celebrex every day or close to it is better than the dosage i cut back to. We are having an extended dry spell in atlanta and i also cannot help but feel that this is a factor. However it is not good for the drought!
i also stay off the computer if it hurts my eyes as this time i had increased light sensitivity and it hurt more than usual.


Modified by Kathy in Atlanta at Thu, Apr 08, 2004, 16:22:27

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