EyeoftheWild
Well-known member
What has become very apparent to me after a very short time of perusing the postings is that the anxiety that we all feel is part of the pathology of BFS, and not a separate entity. This recognition is, I believe, an important distinction and one that could help with the successful management of the syndrome. The taking of various drugs to control, what is at times, an almost debilitating fear serves only to mask the crux of the problem and suppress one element of BFS. I believe that BFS must be thought of, and treated holistically: one body, one mind. Herein lies a conundrum. How are we to reconcile our twitching, perceived weakness, sore muscles, numbness, cramping and anxiety so that our life is not a constant merry-go-round of trepidation for our future. Many of you have posted excellent suggestions on the management of this syndrome such as: yoga, pilates, massage, love-making, avoidance of various things and the taking of others. There is also the camaraderie of this website, the positive effect of which cannot be overstated. However, despite this plethora of sage advice and incredible moral support, the fact remains that, a simple twitch in a new location can send us into a tailspin. What to do?
At the beginning of our experience we found ourselves in an unimaginable place. A truly dark pit of hopelessness and despair. Perhaps called out to God or railed at Him, we made promises to be better people, to content ourselves with what we had, to revel in our ordinariness. Just please, please, please don’t let me be afflicted with……..! Then we found aboutBFS.com, and with it we found that we shared a startlingly similar experience. We found a place of succour, of comfort, a place we could go to without fear of, “oh come on, it’s all in your head.” We know that nothing could be further from the truth, we know that BFS is a recognizable and diagnosable condition. Or do we?
I am a rank beginner BFS’r, I have only one visit to an over-worked doctor in the ER and a diagnosis of, “I’m not sure what’s going on but I don’t think it is nasty.” Certainly this pales in comparison to the many of you who have lived quite a while with this syndrome, and have had one or more visits to the neuro. In every case that I have read about, none of you has been diagnosed with anything nasty, certainly not the one we all dread. This leads me to a second conclusion that, perhaps, part of this syndrome is also a sense of the surreal in the face of facts. Please understand that I am in no way pointing fingers, twitching or otherwise, at anyone. Indeed, many of you have moved comfortably beyond the fear and anxiety. In fact, it is because of you and your valuable information that I feel I am able to add my two cents worth.
We have a sense of fear that is palpable: it feels real. However it is not the fear of actually having a gun to our head but rather a perceived fear of what might be. We have perceived weakness and yet are strong, so our perceived fear must also be based on what is not. In other words, if we can accept that we are strong even though we feel weak then we can equally believe that this fear is born out of a shadow, not a reality.
I have noticed, almost without exception, that the people that post on this website are caring, considerate, intelligent and thoughtful. Many of us are surrounded by family and friends who care a great deal for us, this is real, this is tangible. We owe it to them to give our best.
So what can we do? We can cast our mind back to when the crisis was at its peak. Show kindness to the co-worker who has wronged you in the past. Smile at your kids and tell you love them, yes even when they are being unreasonable. Do the unexpected for your spouse. Laugh more. Go to the extended care facility and hold the hand of a really sick patient. One who has the disease that you are so terrified of contracting. Take a break from heel-heel, toe-toe. Accept who you are and where you have arrived in life. Namely we must be less centered around self. Having BFS is an opportunity to be the person that you are: caring, capable and loving. Perhaps this is really what being born again means, that we really understand the preciousness of life. It means that we have decided to drink from the chalice of affirmation instead of the one of anxiety and fear.
In conclusion: A dx of BFS, is simply that, with all it’s concomitant symptoms. Believe in it as you would a diagnosis for any other malady.
Assess your values: a dx of BFS is an excellent time to make changes because they undoubtedly will come from within.
Perceived weakness and fear is not real, don’t believe in it.
Lastly, Is there going to be days when we are fatigued, have perceived weakness and are twitching, that lead us to despair? You bet. And for those days when nothing else helps then you have aboutBFS.com.
Cheers,
Basso
At the beginning of our experience we found ourselves in an unimaginable place. A truly dark pit of hopelessness and despair. Perhaps called out to God or railed at Him, we made promises to be better people, to content ourselves with what we had, to revel in our ordinariness. Just please, please, please don’t let me be afflicted with……..! Then we found aboutBFS.com, and with it we found that we shared a startlingly similar experience. We found a place of succour, of comfort, a place we could go to without fear of, “oh come on, it’s all in your head.” We know that nothing could be further from the truth, we know that BFS is a recognizable and diagnosable condition. Or do we?
I am a rank beginner BFS’r, I have only one visit to an over-worked doctor in the ER and a diagnosis of, “I’m not sure what’s going on but I don’t think it is nasty.” Certainly this pales in comparison to the many of you who have lived quite a while with this syndrome, and have had one or more visits to the neuro. In every case that I have read about, none of you has been diagnosed with anything nasty, certainly not the one we all dread. This leads me to a second conclusion that, perhaps, part of this syndrome is also a sense of the surreal in the face of facts. Please understand that I am in no way pointing fingers, twitching or otherwise, at anyone. Indeed, many of you have moved comfortably beyond the fear and anxiety. In fact, it is because of you and your valuable information that I feel I am able to add my two cents worth.
We have a sense of fear that is palpable: it feels real. However it is not the fear of actually having a gun to our head but rather a perceived fear of what might be. We have perceived weakness and yet are strong, so our perceived fear must also be based on what is not. In other words, if we can accept that we are strong even though we feel weak then we can equally believe that this fear is born out of a shadow, not a reality.
I have noticed, almost without exception, that the people that post on this website are caring, considerate, intelligent and thoughtful. Many of us are surrounded by family and friends who care a great deal for us, this is real, this is tangible. We owe it to them to give our best.
So what can we do? We can cast our mind back to when the crisis was at its peak. Show kindness to the co-worker who has wronged you in the past. Smile at your kids and tell you love them, yes even when they are being unreasonable. Do the unexpected for your spouse. Laugh more. Go to the extended care facility and hold the hand of a really sick patient. One who has the disease that you are so terrified of contracting. Take a break from heel-heel, toe-toe. Accept who you are and where you have arrived in life. Namely we must be less centered around self. Having BFS is an opportunity to be the person that you are: caring, capable and loving. Perhaps this is really what being born again means, that we really understand the preciousness of life. It means that we have decided to drink from the chalice of affirmation instead of the one of anxiety and fear.
In conclusion: A dx of BFS, is simply that, with all it’s concomitant symptoms. Believe in it as you would a diagnosis for any other malady.
Assess your values: a dx of BFS is an excellent time to make changes because they undoubtedly will come from within.
Perceived weakness and fear is not real, don’t believe in it.
Lastly, Is there going to be days when we are fatigued, have perceived weakness and are twitching, that lead us to despair? You bet. And for those days when nothing else helps then you have aboutBFS.com.
Cheers,
Basso