Left alone..aka how BFS ruined my life

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Left alone..aka how BFS ruined my life

Postby TwitchyDoc on May 18th, 2015, 2:53 am

First of all, I do know I caused this to myself...this is a warning for everyone struggling with BFS and letting it rule their life.

I have had BFS for nearly 8 years, mostly in my upper body, including the tongue. Being a neuropathologist, I knew too much and could not simply let it go, I started researching, posting on numerous forums and asking my colleagues. Every non-standard ALS case brought me down, every case of twitching-first made me convinced this is going to be my fate, too. This has not changed.

Fast forward. I noted some swallowing discomfort about 8 months ago. I underwent the videofluoroscopy (modified barium swallow) which was not entirely normal but also cannot be considered abnormal. Since then, I have read about 3 books about swallowing disorders and neurogennic dysphagia and I have slowly isolated myselft from the world. I have lived from day to day, with no future and with constant fear.

And the worst was yet to come. I lost all of my remaining family members (I only had 3 relatives), they died within 3 months, including the one who was like a mother to me. I left alone with my wife, whom I have know for 12 years and always stood by me, during the worst, during the best...She sacrified everything to be with me and I dedicated 12 years to helping her with her personality/anxiety disorder so that she could live a normal life. In the last 10 years, I was never without her for more than 12 hours, we did everything together to the extent some people could not understand how strong a bond we had. I considered her a part of my being, something so important to me, so crucial that I did not even think I could lose it. In the last months, we discussed holidays - I was like "I do not care, who knows where I will be in two months" (assuming my swallowing will worsen)..and I replied like that to anything she suggested. I was so focused on my problems I told her I did not want to talk about work...I did not plan future with her, did not talk to her much about other things than ALS/BFS...all she heard from me was "there is no point for me to plan anything".... so she felt like I am cutting her off. I cannot blame her but it hurts so much, it has been 12 years and she meant all, really all to me.

So in the end, I do not know if my swallowing issues will worsen but my constant fear and obsession ruined my life, it took away all I had. So if what I have is benign, it still has devastated me.

I am leaving this forum, thank you all for your support, it meant so much to me. Live your life, do not borrow troubles..if I was listening to people here, I would have my love and life...

Bye guys!

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Re: Left alone..aka how BFS ruined my life

Postby Yuliasir on May 18th, 2015, 5:13 am

holy God...

so sad
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Re: Left alone..aka how BFS ruined my life

Postby German2 on May 18th, 2015, 7:59 am

Dear Docen,

I am so sad about your post...really sad. And there is a lesson learned for me, too...

I hope so much you will recover from all the things and you can find your peace of mind despite of what you undergo now!
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Re: Left alone..aka how BFS ruined my life

Postby garym on May 18th, 2015, 9:48 am

Docen, sorry to hear about your struggles...it was due to those very fears, several years back, that I decided to get treatment for my anxiety. I was hurting my family. Again, so sorry to hear about how things are going for you, but my friend, BFS didn't ruin your life, anxiety did. Please use this as a stepping stone to get some help dealing with it.

take care,
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Re: Left alone..aka how BFS ruined my life

Postby Scboy on May 18th, 2015, 5:26 pm

Sorry for your hardships. I do not know your situation so I won't even pretend to understand. The cycle of negative thoughts is so hard to break. Perhap you should seek some coaching on how to break the cycle. I don't know if you are a religious person or not, but prayer and meditation can help tremendously. Don't speak in past tense. Don't think of your life as ruined. You DO have a future that YOU do have the power to control your own thoughts.
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Re: Left alone..aka how BFS ruined my life

Postby Kev74 on May 18th, 2015, 7:13 pm

I think all of us here know just how devastating anxiety can be. When I went through my lowest points I didn't think things would ever change, but it did. It didn't happen over night but things did gradually get better. There's two sayings I really like, "when your going through hell keep going" and "this too shall pass". You can fight this and win. But if you can't do it on your own then look into getting professional help.
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Re: Left alone..aka how BFS ruined my life

Postby SecretAgentMan on May 18th, 2015, 7:39 pm

They say that fear does not prevent death, it prevents life. I am very sad to hear that you have been unable to cope, but you are not alone. Many struggle as you have struggled. Life has a way of beating us over the head with lessons until we learn what they are teaching us and change our ways. If we don't change, the lessons just keep getting harder and harder. I have had far too many experiences that have shown me that this life is not all that there is to our existence. That knowing has helped me immensely in overcoming my own fears. I pray that you find the peace you are looking for so that you can finally let go and move on. A word to the wise though. The peace you seek is not anywhere 'out there' to be found. It is within and always has been. I realize that probably sounds cheesy, but when you find it you will understand. BFS doesn't ruin our lives. We do that through the attitudes we adopt and the choices we make. Challenges are a given in life. It is how we handle them that makes or breaks us. We do a good job at mucking things up from time to time, but I don't believe anything stays broken forever though. Hang in there and good luck to you...
If your mind is your own worst enemy, why not make friends with it and turn it into your greatest ally? Mental discipline is achievable and there is help available. Learn what works for you, practice, and change your life for the better.
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Re: Left alone..aka how BFS ruined my life

Postby Buzznerd123 on May 27th, 2015, 4:15 am

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Last edited by Buzznerd123 on May 1st, 2016, 12:05 pm, edited 1 time in total.
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Re: Left alone..aka how BFS ruined my life

Postby js1 on May 27th, 2015, 1:21 pm

So sorry to hear this, Doc. Just know that you are really not alone, and do everything you can to get control of your anxiety. That is the real problem, and as you note, it has "devastated" you. I see a lot of parallels between our stories. I have hyper anxiety and I feel like I'm too smart to fool myself (wrong). I've been seeing a therapist, and have been practicing exposure. It was hard at first (and still not always effective), but it's made a huge difference in the way I live my life. I'm happy to talk to you more about it, but essentially, you need to confront your fear over and over without attempting to explain the bad away. I also was in danger of losing my wife to this -- but she forced me to get therapy and, even though I have all the same symptoms (swallowing, twitching, etc.), I am living my life again. I truly hope you can do the same.
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Re: Left alone..aka how BFS ruined my life

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