Trying to keep the chin up...

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Re: Trying to keep the chin up...

Postby volfan on June 26th, 2012, 10:22 pm

Bill, if you are coming out this way with your Vulcan self, stop over to see me too. I'm just a hop, skip and a jump from Greg and what the heck...I'll take a dose of that stuff. I'm game for anything once - BFS or not.
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Re: Trying to keep the chin up...

Postby Ghayes420 on June 26th, 2012, 10:34 pm

...plus she is light years better looking than me Bill. That goes without saying.
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Re: Trying to keep the chin up...

Postby volfan on June 26th, 2012, 11:09 pm

AND I am the one person here that is older than you. So, I have that going for me. ;)
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Re: Trying to keep the chin up...

Postby chrissi on June 27th, 2012, 1:25 am

Greg this is FAR away from being TIRED of your phobia. Although I often sound like a broken record, this is not the case. It is more that I do not WANT to give you more reassurance because I think that ( besides the fact that it doesn't work anyway)this is holding U in some kind of dependency of us and that board. I have been there with another member, and I do not want U to get in that state with ANYONE on the board.
The fact that I think U are a nice guy I would like to have a BBQ and a beer one day does not rule out on the other hand that I refuse to feed your anxiety any further by trying to discuss facts, myths and figures about ALS with U or give U constant comfort regarding your ALS obsession. Of yourse there are therapies that work for health anxiety or being a control freak. But that means that for a first step U have to TRY it, then you have to be PATIENT and then U must be prepared that maybe the first therapy doesn't work and you will have to try another.
There's no instant health phobia cure. My sis and my dad have both had psycho therapy for health anxiety (going over 2 years or so) and they both said in the beginnings, there's NOTHING made against your fears. They will try to find out where they come from, which will probably force U to be confronted with things you do not want to hear. It is a hard hard way and I do not hink that BFS per se is a reason to treat any member with psycho therapy but I think that especially for U and a few more members this would be a good idea. U are not in a good mental shape buddy, only a few steps away from turning into something you definately do not want to be. It is time to react to that for U.
"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: Trying to keep the chin up...

Postby mwagner on June 27th, 2012, 9:59 am

Greg,

I'm sure you're tired of advice at this point, but what about trying to do something like Qigong (which I have heard mentioned on this board from Bill, I think, as very helpful). I had a friend who tried it and said it was incredibly calming. Also - tai chi, meditation, yoga, etc. could all be helpful. I'm mentioning Qigong, because my friend recently raved about it and made me think that I really ought to get on the bandwagon and try it. Meditation is hard for me, I usually fall asleep, or find myself obsessing over my negative thoughts even more.

Link on Qigong, if you're interested:
http://en.wikipedia.org/wiki/Qigong

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Re: Trying to keep the chin up...

Postby Ghayes420 on June 27th, 2012, 10:02 am

Chrissi, I always appreciate you taking the time to respond to my posts. Just to be clear, this post want not meant for veterans to line up and offer me reassurance. I have received way more than my fair share of reassurance from the very kind members of this forum, which has helped. I have also obviously received my fair share of reassuarnce from the doctors I have seen, this has helped me even more. The only things standing in the way of full recovery is this body and its increasing symptoms.

This thread was meant as more of a "what works/worked for you?" and a "Hey do you feel the same way?" type of thread. I apprecaite all the thoughts and advice from veteran members such as yourself, mike, matt and mitra. And I also apprecaite knowing that others battle this too, like shanny, Tim, Ash, Vicki, etc.

I am saying that this cycle of reassurrance has been identified and acknowledged. Breaking the cycle is at the top of my "to do" list. The problem I am having is the way to attack it. The psychotherapy you suggested has been helpful in the past. After a few months, we did identify the main 'root problem' of my health anxiety. But neither of us had a good solution on how to fix the problem, because (without airing my junk on an internet forum) the therapist identified that the main problem is external. And he wasnt the first to do so. So after four months, we usually end up in a stalemate. But I do agree with Mitra, maybe there are just some therapists better than others. And dont forget that therapy here in the US, even with my excellent insurance is still ~$300/month minimum. And good therapists are really hard to come by here in California where most of us are crazy to begin with. :)

Just to recap...not looking for reassuarnce, need to break that cycle.... rather what it is that works for you, because nothing is working here and symptoms are progressing, which makes it that much harder. I love how my neck and trapezius muscles are popping today rather constantly, that is always a nice start to morning. :) :x Thanks again for listening.
Last edited by Ghayes420 on June 27th, 2012, 10:07 am, edited 3 times in total.
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Re: Trying to keep the chin up...

Postby Ghayes420 on June 27th, 2012, 10:05 am

mwagner wrote:Greg,

I'm sure you're tired of advice at this point, but what about trying to do something like Qigong (which I have heard mentioned on this board from Bill, I think, as very helpful). I had a friend who tried it and said it was incredibly calming. Also - tai chi, meditation, yoga, etc. could all be helpful. I'm mentioning Qigong, because my friend recently raved about it and made me think that I really ought to get on the bandwagon and try it. Meditation is hard for me, I usually fall asleep, or find myself obsessing over my negative thoughts even more.

Link on Qigong, if you're interested:
http://en.wikipedia.org/wiki/Qigong

Mitra



And Mitra, great to hear from you and thank you for this link. I am going to give Qigong a try next. I fail at meditation in similar fashion to the way you describe. Yoga has been tough because when i pose, if a twitch hits me, the concentration leaves and negative thoughts enter. I wonder if Qigong has a better way of calming the mind. Thank you for that link. I need to hit up Bill with some other links to this. Thanks again!
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Re: Trying to keep the chin up...

Postby mwagner on June 27th, 2012, 10:10 am

No problem, Greg - I'm going to try it too, I think. It sounds like the only real possibility with alternative stress reduction methods for me too. Yoga drives me nuts when I'm in a certain position and I just twitch and twitch. Plus it makes my twitching worse afterwards, so while it's supposed to be stress reducing, it raises stress for me :) Really stinks because I used to love doing yoga and did it all the time back in those non-twitching days that I hardly remember now.

Anyway, whichever one of us tries it first will have to tell the other how it went! Denver doesn't seem to have lots of places that teach it, but I'm going to keep searching. My very stressed out friend from college said she had a fantastic experience with it, and she isn't big into things like yoga/meditation/etc.

Take care, Greg!

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Re: Trying to keep the chin up...

Postby mwagner on June 27th, 2012, 10:22 am

PS: With regards to your comments about therapy - I still stand by the fact that it is really hard to find a good therapist who can truly work with our unique problem. I studied psychology and there's nothing that teaches you how to deal with a phobia/anxiety issue as specific as ours.

We are a unique group. We have more than just health anxiety. We have health anxiety coupled with very strange, uncontrollable symptoms that occur in our bodies every day. And unfortunately, some of those symptoms mirror those of the worst disease ever, which perpetuates our anxiety even more. Sometimes I feel that all we really have to support us, is each other. That sounds a little sappy, but it's true, at least in my case. Our families don't get it, our friends don't get it, our doctors don't get it, and most therapists don't get it. Many reprimand us for our anxiety, because we have a benign condition. No one seems to understand our <unjustified> fear that things may develop into something worse, which is fueled when our twitching changes, or gets worse, or moves to the tongue or some other strange place, etc.

So, Greg, I want you to know that we are here to support you, and you are always welcome to post your fears. That's what we're here for. You'll get some tough love from some folks, and others can simply relate to the psychological hell you may be going through that day.
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Re: Trying to keep the chin up...

Postby Wells05 on June 27th, 2012, 11:20 am

I would like to see Greg in YOGA, JUST SAYING! That would be a great sight to see! LOL, Love ya greg :)
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Re: Trying to keep the chin up...

Postby volfan on June 27th, 2012, 2:06 pm

Greg - at the very top of my "to do" list is *beep* slap myself as a reminder that I can go to the dark side if I let myself. There are days I slap myself multiple times. I look forward to the one day when there is nary (my mother loves that word) a slapping. But hey - maybe a slap a day is good for whatever ails you. The other thing that keeps me sane is I am so flippin' busy I don't have time to fret much. I am taking the next three days off and spending time with my kids. That keeps me busy cause there are so many xbox games to try and learn. When I am not absorbed in my kids, I am at work managing a group of about 13 super sharp business analysts. While that is stressful (cause I am almost the dumbest one and yet somehow I am the boss), it keeps me busy. I think busy is the key. That, and again, the daily *beep* slap. Still, I have my moments. I don't want to pretend I am something I'm not. Cause "to thine own self be true".
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Re: Trying to keep the chin up...

Postby volfan on June 27th, 2012, 2:11 pm

how come this board changed one of my words to *beep*. Technically, it means female dog. Doesn't it? Or is the internet too young to know that? Oh, dear. Bill....as a person who is 50ish (do I have that right?), you know that a b....i....t....c...h is just a female dog, don't you? I think the internet needs to read "Where the Red Fern Grows". that is wonderful book.
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Re: Trying to keep the chin up...

Postby plainslady on June 27th, 2012, 2:39 pm

Greg, I was going to PM you but then I thought maybe it would be best if I just shared what I was going to say with everyone, especially for the sake of anyone who is going through this fear like you are. From a neurological standpoint Greg, we know you are fine. You may not fully believe it, but the best all have said you are not afflicted with a life ending disease. You are not the exception to the rule, you do not get to defy the odds.

This is not even what I am concerned with though. You will never believe any of those specialists, any of us, not even God Himself until you find a way to aggressively attack your anxiety. I know this because I have been there Greg. It has nearly been a year ago that I stayed up all night staring at the handgun on my dresser, imagining what it would be like to put it to my head and pull the trigger. I just wanted my brain to shut up. I was tired of being scared, tired of not being able to have a single rational thought for all the anxiety ridden ones SCREAMING at me in my head. I hated waking up, I hated going to bed, and I hated every moment in between the two. I got so low that I didn’t even care so much about how my suicide would impact my kids, my husband, my family, and all my friends. I just didn’t care anymore. I was out of hope, totally empty, and ready to sleep forever.

I didn’t eat, I didn’t bathe, I didn’t bother to leave my bedroom much unless I had to. I would cry for so long and so hard I would vomit. When anyone tried to talk to me, I yelled at them. I told my husband and my mother I hated them, and I told my kids to just leave me alone and let me have some peace. I hated the sound of all their voices. When I looked into their eyes, I felt nothing. Nothing appealed to me. I had lost all desire to live.

I cannot tell you why Greg, but one day, I decided to give it one last try. I don’t know if it was some primal will to live, some calling from God, I don’t know. I reached out to my mom. I reached out to the people on this board, some of whom played a vital role in saving my life with their encouragement and friendship. (Remember, you and I share our BFSiversary Greg. Reading your posts is one of the things that kept me going on my worst days. Knowing you and I were in the same boat and had been in this the same amount of time was a real comfort to me.) I told myself I was going to give it one last go, one last chance to live. I had to FIGHT MY ASS OFF to get my life back. Bit by bit. It is the hardest thing I’ve ever done. Having BFS, having my back problems and all this chronic pain PALES in comparison to the fight it was to crawl out of the pit I was in. Having fought back from the brink of killing myself has made me a strong person Greg. It has been worth all the effort, all the tears and swallowing of my pride I had to do.

I am confident now that whatever life throws my way, I can handle it. I still get scared Greg, it is human nature. And having anxiety disorder, like so many of us here I am prone to freak out when most others wouldn’t bat an eyelash. But this stuff isn’t ruling me anymore Greg. I rule it. I’m the boss nowadays, not my emotions, not what is going on around me, and certainly not some pain in my a** benign disorder called BFS. It is time to step up. It is time to stop saying “I won’t do this, I won’t do that” and say “I WILL DO WHATEVER IT TAKES TO GET BETTER”. There is no magic pill, there is no therapist out there with the right words that will fix you overnight. This is like athletic training Greg. You have to discipline yourself and through trial and error you find the right treatments that strengthen you and build your confidence. You are going to have some awful, gut wrenching sh*tty a** days where you will think you’ve lost but you get out of bed and you live your life anyways. In the beginning, you will want to give up more than you will want to keep trying. That is normal and it doesn’t mean you’ve failed. It means you’ve dug yourself a big f%*&ing hole and it is going to take a while to crawl out and fill it back in so you don’t fall down there again.

You are a great guy. Good looking, smart, funny, kind…..and I for one think you have so much to offer. You are eaten up with anxiety right now, but this is temporary Greg. If you can step up and make the decision to do WHATEVER IT TAKES to get better, we will look back on this one day and laugh and cry over how far we’ve come. It’s worth it Greg. Come on, fight this.

Frances
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Re: Trying to keep the chin up...

Postby raindog on June 27th, 2012, 3:03 pm

Greg, sorry about the downer you are going thru. My advice would be to take a rest from here and let your kids have their dad back. Spend time with them watch them smile, have fun, take them fishing or do things they want to do. I will guarantee the BFS will slip into the background. Time is the greatest healer and i'm sure you have a heck of a lot left. Don't waste another minute and remember we are all behind you.

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Re: Trying to keep the chin up...

Postby wjjw on June 27th, 2012, 3:23 pm

volfan wrote:Bill....as a person who is 50ish (do I have that right?), you know that a b....i....t....c...h is just a female dog, don't you? I think the internet needs to read "Where the Red Fern Grows". that is wonderful book.

A good looking, smart, older woman has the right to do whatever the f$%ck she wants, in my book :wink:

Still haven't figured out how to respond to this whole Greg thread though .... the angel on one shoulder seems to be making sense, but in my old age the guy on the other side is really tempting me........

Cheers,
Bill
A knowledge of the existence of something we cannot penetrate, of the manifestations of the profoundest reason and the most radiant beauty, which are only accessible to our reason in their most elementary forms--Albert Einstein
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Re: Trying to keep the chin up...

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