upps alomost forgot 1 year update

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upps alomost forgot 1 year update

Postby chrissi on July 4th, 2012, 3:40 am

...it is already 3 weeks ago that I had my first EMG anniversary. Of course I was convinced I was dying, imagined my kids growing up without me and the usual stuff. A crying mess, my mum and sis had to come and take care for my kids.
My Symptoms were enormous, of course I was twitching but I was also tremoring all over and my fingers going crazy, and the pain and stiffness were so bad I could hardly walk. They got me a wheelchair in hospital because it was so bad :shock: I had places in my body so numb I could stick needles in there (which I did to self-test :oops: ).
For me it was IMPOSSIBLE to believe that this could be benign.
Then I found this forum and started to feel better, especially because I found a person that had been going through all that weird stuff I mentioned in my 126 sx post......she was close to her 2 year mark then and doing much better, so I thought...OK, maybe those 5 neuros at hospital and my home-neuro are right and I am NOT going to die of ALS.
As noone really knew what it is I "decided" to treat it like Fibro and saw a Fibro specialist I also make physio therapy, well, today I am much much better than a year ago. Many many days I am symptom free, although I still have relapses whenever I have an infection or a hormonal change. There are many different opinions about the reasons of BFS, even many many names it is given. I found pieces my personal "truth" about MY BFS, but I think there are different reasons for most people on here. So at some point I just let it go. Noone will make it definate...noone will give me the exact reason, an exact diagnosis or the wonder-pill that will cure me. So I just give a *beep* about that part. The part I focused on is how to find relief in symptoms and I found mine. Some days I still feel like crap, especially the first days of a little cold that always make my BFS go crazy. My hands still have an almost constantly swollen feeling, a reminder of the fibro parts in BFS.
I hated my BFS a year ago. Today I am not so sure. I think today I am stronger , live healthier and have less anxiety than before BFS. I enjoy my life more, I am a much more relaxed person and I am happier. Somewhere on that path I also lost my IBS for most part which had been constalntly there for the last 18 years.I have met a bunch of really really nice people and I have learned a LOT about anxiety, not only my own but also that of others. BFS forced me to confront myself with parts of me and my past I did not want to see or think about, but it was necessary.
Saying I am thankful for it would be wrong as well, because BFS is a beast that took away a whole summer from me and-much worse-my kids who had taken their mum mentally away for months. It feels terrible if you look at your kids and you are so srewed up that you don't feel anything..how bad must it be for those little guys to look into their mommies eyes and see nothing but emptyness?? Someone recenly said that anxiety is a selfish disease..that is right. It puts yourself and your symptoms in the center of your attention and leaves out the ones that need U. I still feel guilty for being a really bad mum then. But I try to be a good one now and to NEVER go back into that dark place I was then. Oh, and I learned to stay away from Dr. google :roll:
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: upps alomost forgot 1 year update

Postby Yuliasir on July 4th, 2012, 4:09 am

Great message as usual, Chrissi!
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Re: upps alomost forgot 1 year update

Postby KatieMG on July 4th, 2012, 7:07 pm

Great post Chrissi! glad you are in such a good place now!
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Re: upps alomost forgot 1 year update

Postby chicagobfs on July 4th, 2012, 11:54 pm

I was following your story crissi with a curiosity and I'm super happy that your doing so great right now. Remember, Im still waiting for your video:)
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Re: upps alomost forgot 1 year update

Postby Ghayes420 on July 6th, 2012, 2:09 am

Thanks for the update Chrissi. Your symptoms started out hard and fast. Whereas mine seem to be slow and growing faster as each day passes. :)

I cannot tell you how valuable you are as a member of this forum. I greatly appreciate your feedback, no matter how honest, and I really apprecaite your patience with me and others as well as your vast knowledge on neurology. Everytime I think i know everything, I learn something new, and it is often from you.

Thanks again and glad you, like others, are still kicking strong after a year.

:D :D
A very proud fasciculator since 8/14/2011. :)
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Re: upps alomost forgot 1 year update

Postby chrissi on July 6th, 2012, 12:21 pm

Thanx guys. Hey Greg.....get that halo off my head, it does not suit my devil horns :wink:
"Our anxiety does not come from thinking about the future, but from wanting to control it" Kahlil Gibran
Anxiety is a thin stream of fear trickling through the mind. If encouraged, it cuts a channel into which all other thoughts are drained
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Re: upps alomost forgot 1 year update

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