A note of reassurance

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A note of reassurance

Postby traveler234 on October 17th, 2011, 10:32 am

Just dropping by on my 2nd anniversary of this long BFS road. I started this chapter in my life with a small twitch. After that I explored the world of google and the journey began. I will say that this message board was both a blessing and a curse to me. It blessed me as I met many wonderful people, that, shockingly, had the same or similar sypmtoms/problems as myself. This forum and a few of the great folks that inhabit it (you know who you are) literally saved my sanity. However, this forum also served as my achilles to ever getting better.

I have found that awareness is a state of mind. I DO NOT believe that our problems are mental or emotional. I believe that they are real, physical and manifested by who knows what. I DO think that our problems are multiplied and feed off of the anxiety created by our minds. My story, your story, is as old as time and will be repeated again and again. Your body does something that is not "normal", you self diagnose through some means of information, your body and mind go berserk. Wash, rinse, repeat.

I was lucky. After a while a gentleman on this sight, (not to mention names mario) was very candid with me. His advice, GET OFF OF THIS FORUM. For most, every minute that they spend on here, is another minute that they spend isolating their symptoms, micromanaging their health and creating an awareness of their bodies that is totally foreign to the human mind. For me the split was an instant, spontanious decision. I divorced this forum. It was painful. I lost a new found dear friend because of it (I hope that she and I can talk soon) However, the result was amazing. Out of sight out of mind as the old saying goes.

I am not going to lie to you and say that my symptoms are gone or that I don't still have a very deep seated fear. But what I will tell you is that moving on and getting your life back trumps the self induced hell that we are, or have been in. Some time ago there was a thread titled something like where are the old timers? I'll tell you where they are. They have moved on. They have made peace with their bodies. I also feel obliged to say that another one of the reasons that it was easy for me to move on from this board was the participation of a few arrogant %%#%@!#* Sometimes people need to be told the firm truth, but the personal slams and attacks by some (one in particular) are not appropriate for most at this fragile chapter in their life.

In any case, sorry to have gotten long, but I promised myself to come back at two years if I was still alive! For everyone that is worried out there, read BFS in a nutshell. Embrace what it says, listen to your doctors and move on with life. You too, will be amazed at the results. To those that I hurt, I am truly sorry. I did what I had to do, for me, my family and my life. I have it back now and hope and pray for each and everyone of you.

My deepest respect,
Kevin
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Re: A note of reassurance

Postby MarioMangler on October 17th, 2011, 11:07 am

Hey Kevin, thanks for the update. Glad the advice helped. :D

I am happy to hear you have moved on with your life. Hopefully this post will inspire others to move along with their lives too. Thank you for coming back and posting this, you are one of the good ones.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: A note of reassurance

Postby Wells05 on October 17th, 2011, 11:44 am

Beautifully said!!! I need to divorce this websight also, I'm going on 2 1/2 years and why am I on here, looking for new symptoms. NOT OK! I'm realizing this more and more. My twitching is nearly pretty much gone, though lately I have had a flare of concern that my left facial cheek is slimmer than my right and has put me in panic mode that my face is atrophying. I need to stop this, I'm going to loose my family and friends for that matter. I need to leave this forum, the hard part is everyone is so fun and nice. I enjoy talking to everyone. I have made friends, people I can count on to be there for me. The separation is going to be hard but I need to do it. Thanks for coming back and opening my eyes that its time to leave this forum. Ashley
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Re: A note of reassurance

Postby MarioMangler on October 17th, 2011, 11:58 am

This forum is great and yes, there are lots of fun and smart and neat and nice people. But the last thing you want to do is make this your peer group. And yes that same advice applies to everyone. Once you start hanging around with "sick" people, you will start to think of yourself as a "sick" person. And none of us by medical standards are actually sick. This is where the problem comes in. The last thing on earth you want to do is make BFS your 24/7 reality.
BFS FAQ:
1. No, that's not bulbar
2. No, the location doesn't matter
3. Yes, we have all had that symptom
4. No, you're not the exception
5. No, that's not ominous
6. No, you don't need an EMG
7. Yes, you will be fine
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Re: A note of reassurance

Postby Wells05 on October 17th, 2011, 12:01 pm

Mario, I think its been a comfort zone for me. I hate telling my friends and family about my worry's, they dont' want to hear it. I have grown to really enjoy so many people on this site. I will alway's check back thats for sure. There are so many new people here and I can see people over 2 Years with BFS are fadeing out.
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Re: A note of reassurance

Postby bobajojo on October 17th, 2011, 12:32 pm

Kevin,
Thank you for taking the time to come back and post. Every now and then I read old posts here and check to see when the last time someone logged in. Anytime I see that a person hasn't logged on in a while, I try to think that its because they are doing better and have gotten passed this madness. For me, I am not ready to leave just yet because as Ashley said, I've met some really great people on this site and its nice to talk to people who can truly relate to what we're going through. But I have stopped using this site as a means to fuel my worry. I only try to read posts like yours. Thank you for your post. -Matt
Over 10 billion twitches since May 2011.
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Re: A note of reassurance

Postby mommylondon on October 17th, 2011, 12:33 pm

Made me so happy to see you post that you are ok and doing well :D Thank you for what you said, meant more to me then you know.

Take care friend, I'm rite behind you

Robynn :D
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http://www.youtube.com/watch?v=Rd6BlNKCkRs
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Re: A note of reassurance

Postby johnnythejet on October 17th, 2011, 12:36 pm

Great post and great advice. Leaving this community indefinitely was the only way I defeated my irrational fears.
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Re: A note of reassurance

Postby traveler234 on October 17th, 2011, 2:52 pm

As a note, please know that I am not discouraging people from coming here and seeking help. That is, in and of itself, the single thing that helped me on my way. We all know the danged neuros don't know what they are talking about let alone our lowly little family practitioner! But seriously, we all find help where we can. I know for a fact that I have truly helped some, and for that I am happy. I also know that for some, the only thing that will heal is time. I guess the soundest piece of advice I could give a person would be to listen to the voice of reason and believe it. Oh how I wish that I had done that from the first visit to my GP
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Re: A note of reassurance

Postby wanderer on October 17th, 2011, 4:05 pm

great post thanks for sharing with us
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Re: A note of reassurance

Postby Wells05 on October 17th, 2011, 4:37 pm

Batman love ur new pic :D
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Re: A note of reassurance

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