Ups and downs with BFS, wheelchairs

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Ups and downs with BFS, wheelchairs

Postby Xina535 on May 10th, 2014, 4:05 pm

Hi Everyone,

I had stayed away for awhile. Even thought I receive much reasurrance on here, it does give me some anxiety.

I had been doing really well until recently. Lately, I have been way stressed, and my symptoms seemed to have come back (more twitching, in more places, cramping feelings). So naturally, as many of you can relate, there goes the spiral of 'what if a**'?'

*sigh* :cry:

Also, I feel like such an *-hole by saying this, but I am going to be honest: any time I see a person in a wheel chair which seems to be MS or A** to me, I almost panic right there. I get hot flashes, dizzy, heart palipitations, etc etc, and part of me wants to go over to them and give them the biggest hugs and/or roll up in a ball and cry for them, and part of me freezes and panics. This also sparks a spiral for me (what if...). I am wondering if I am alone here or if other BFSers feel similar.

Anyway, my one year of twitching will be in July and I am just baby stepping. I have not had an EMG yet, I am still terrified to get one. I do have an appt with a new neuro as a second opinion at the end of the month and I will see if he/she will want to do an EMG or if they dont think it's necessary.

Wishing everyone well!
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Re: Ups and downs with BFS, wheelchairs

Postby ShawnW on May 11th, 2014, 9:27 am

Finding fear and compassion when seeing visual images of suffering isn't abnormal.
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Re: Ups and downs with BFS, wheelchairs

Postby Yuliasir on May 11th, 2014, 10:49 am

For me it always helps to say "it is not infectous" and "he/she is not me, I am not he/she"

I found I really keep childish belief that diseases and elderly age are infectous... after I discovered this mantra, it appeared I can speak to SD people (to found they could be really charming) and speak to a colleague writer severely crooked with child paresis, and I have a blind friend for over 10 years, suffering many other syndromes altering his face, speech and mocement and he is a great man. I also have a kind of friend (not close but very friendly) with a chondrodysplasty (she belongs to 'little people', like Mr. Dinklage) - and I am really happy to be her customer and friend.
maybe this mantra may help you too :) but if not, you need to find your own. Whellchair is just a mean to keep mobility.
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Re: Ups and downs with BFS, wheelchairs

Postby Xina535 on May 12th, 2014, 2:19 pm

Thanks for the responses and tips! The 'I am not he/she' I think will help me the most.

I didn't have the thought that they are contagious or that they are bad people, I just manifest my fear in a wheelchair. Actually, my psychologist asked me to think of anything that comes to mind when I think of this disease and I said, Wheelchair, and she said ok, now stand up. And then she compared how much bigger I am than a wheelchair, and therefore, my fear. I still can't get past it though. Actually I have a deep wish to help fight for cures and help or volunteer for people with this disease (I wrote about it before), but I am struggling with my own mind ....still! :x :shock: :? :( :cry:
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