Your Feelings about Dystonia Part 1...
What are your thoughts about living with dystonia ? Do you hate it ? Do the symptoms make you feel angry ? Sad ? Upset ? Has it ruined your hopes , dreams and goals ? What were they ? How has dystonia made you feel on a daily basis ? How have you coped with dystonia ? Share your experiences and feelings in this post.
beka
infoc4d@aol.com
beka
infoc4d@aol.com
Tags: care, chronic, coping, counseling, disease, dystonia, emotions, help, illness, mental
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Permalink Reply by beka on -
As one of the moderators , I thought I would begin this post hoping others will join in on this discussion. Today, although sunny with vivid blue skies, my mood does not reflect the reality of things with dystonia. I ran out to the local bodega and people stared at me. First my neck is back to being twisted to the left, so gazing to the left side of the street is about all I can do today. Climbing in and out of my fire escape ( yes, illegal in NYC ) has been downright unpleasant. My SCMs seem to be bulging today and I'm wondering what happened to the efffectiveness of DBS ??? Ice packs have been inuse almost everyday at nite 20 min on, 20 min off to the back of the head. Now, how in the world , am I going to finish up my 2 12-hour work nite shifts ??
( Shifts never end on time for nurses...they go on to 13, 14, 15, 16 hours...with all the paperwork...)
beka
To be continued...
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Permalink Reply by beka on
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Forgot to add these two Link items :
About Beka : http://www.medscape.com/viewarticle/541495
Beka's Blogs about Nursing, dystonia, medicine, politics and more at :
http://medscapenursing.blogs.com/medscape_nursing/2008/06/to-picket...
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Permalink Reply by Andy on -
Beka,
I believe you a pushing yourself way too hard. Nurses shifts or any long hours will send your dystonia haywire. Even that extra bit of exertion hits the body hard I find. I pushed at work to get to a 35 hour week with 2.5 hrs commuting a day and got a terrible backlash - I now work 32 hours, one day at home and have a taxi into work - fought for by me and my Occupational Therapists firm advice. I have to live frugally but I can eat and type properly again!
Andrew
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Permalink Reply by Andy on
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Beka,
I think I was a bit strong on my comments about you overdoing your work hours - if you love what you are doing then psychologically it helps. It's a crucial part of your life. You do a great job nursing and being a moderator on this website which is so helpful to all dystonia sufferers.
Best wishes
Andy
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Permalink Reply by beka on
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Ok, today is hot and humid. In the morning after a 12 hour shift I climb onto a plane to head Upstate to see my mother. To rant and rave about dystonia. Just one of those visits. As well as to be fed by her and add on a few pounds.
I am dreading the airport mess that lies ahead in the morning- the long security lines, the anti-theft detector, the masses of people, the sweat dripping off people...What a picture, wouldn't you say ??
I picked a seat at the end of the plane. Hopefully no one will sit next to me. If sitting becomes impossible, I can lie down and ask for more pretzels !!
The Masses of People just seems to overload me and make symptoms worse...
Oh Gosh - HELP !!
beka
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Permalink Reply by Ellen S on -
Oh Beka, I am so sorry to hear that you are feeling so badly. I'm glad you made it thru your shift and that you are headed home. A little R and R will do you good I hope.
I will write more later about my feelings and my own life with Dystonia, but I'm going to celebrate my 25th wedding anniversary tonight (only a few days late) and have to run. I couldn't read your post and let it go without showing you some support and understanding.
Beka, we think you're terrific.
People look because they are curious. They don't know you. You can't blame them for natural curiosity unless they're making WA comments. I see this as a great opportunity to educate. You are so good at this educating stuff!
I think we all need T-shirts printed up with something catchy and cute on them to remind people that we are just like them. LOL!!
Remember that most everyone knows someone with a movement disorder, if they don't have movement disorders in their family to boot. It's likely they know this, but don't know the connection.
You could actually make a difference in somebody's life!
I know... a jacket embroidered with the Care4Dystonia logo and a one sentence explanation what it is. Maybe even the phrase,
"Ask me..."
You have a good weekend. We'll be thinking of you. You too Toots. It's good to meet you. :)
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Permalink Reply by monty007 on -
Beka, it seems that when I am out in a crowd that my dystonia seems to react to all the noise and confusion around me, it that normal?
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Permalink Reply by beka on
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It has always been my thought that dystonia has a sensory overload component to it. I have mentioned this to many doctors. They just all laugh. But, I too do not do well in crowds. I feel as if my mind becomes jumbled, and misfiring intensifies and this then leads to worsening of dystonia symptoms. Do best in QUIET settings.
Geez- I do live in the wrong city of all places - Manhattan !
beka
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Permalink Reply by Jimmie on -
Hi Beka, to start with, as I have said before, you are my hero. Please keep up the good work and be assured my prayers are with you!!
When I was being diagnosed with ST the neurologist purposely asked me confusing and irritating questions to judge the reaction and the severity of my spasms and it was definitely worse the more confused and irritated I became. when he explained what he was doing the spasms lessened.
Hope things get better for you.
Jimmie
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Permalink Reply by beka on
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Aren't neurologists clever , sometimes deceiving in a way when trying to identify dystonia ? Like you're making it up ??
No, ALL OF YOU ARE HEROS. Not me .
beka
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