exhausted frustrated

[chrissi]

I am on this forum now for almost one and a half year. I have fought my beast and hoped to help others. But today I found out....it does not help. It does not help anyone to be told over and over they are OK. All the information needed is on this board in the basic articles, and the rest won't help. Every single person I tried to intensely help is now in a worse state than before. Not one person that REALLY took a long term benefit from anything said and done. It seems that the fear of this damned disease is just overwhelmingly powerful. Seeing how this fear is like a worm eating through the lifes of the wonderful, intelligent and warm hearted people I met here, is one the most shattering things I ever faced in my life. So I kind of retire , at least for a while, maybe I will have an idea how to help. If not, I just leave this note: ALL you have to know about BFS is in the old posts, like BFS in a nutshell. And for everything else: if this information and your neuros words are not enough for you, then you need to work on your anxiety. Make a therapy , whatever. Constantly seeking for reassurance is hurting you. And even worse: i feel that with every sentence I tried to reassure a scared person, I have done more harm than help. Because it hindered this person to take care for him or herself. And it took away time from my family and marriage without doing any good. This is my bottom line for the last months. Think twice about what you ask for and what you give, if it will be beneficial for any side or not..

[stephane28]

No chrissy you can't say that. You've been such a great help to me !
sorry i don't reply very often. This is because of my english level!
take care

[mommylondon]

I am on this forum now for almost one and a half year. I have fought my beast and hoped to help others. But today I found out....it does not help. It does not help anyone to be told over and over they are OK. All the information needed is on this board in the basic articles, and the rest won't help. Every single person I tried to intensely help is now in a worse state than before. Not one person that REALLY took a long term benefit from anything said and done. It seems that the fear of this damned disease is just overwhelmingly powerful. Seeing how this fear is like a worm eating through the lifes of the wonderful, intelligent and warm hearted people I met here, is one the most shattering things I ever faced in my life. So I kind of retire , at least for a while, maybe I will have an idea how to help. If not, I just leave this note: ALL you have to know about BFS is in the old posts, like BFS in a nutshell. And for everything else: if this information and your neuros words are not enough for you, then you need to work on your anxiety. Make a therapy , whatever. Constantly seeking for reassurance is hurting you. And even worse: i feel that with every sentence I tried to reassure a scared person, I have done more harm than help. Because it hindered this person to take care for him or herself. And it took away time from my family and marriage without doing any good. This is my bottom line for the last months. Think twice about what you ask for and what you give, if it will be beneficial for any side or not..

Wiser words have never ever been spoken on here Chrissi...You were a wonderful asset to this board....and I am so happy we met here and were able to help each other with getting over this...and also I want to say ...that I'm rite behind you friend..rite behind you..

Take care Chrissi

[plainslady]

Chrissi, you have been a tremendous asset to this community and I for one am thankful for the time and effort you put into your posts. Thank you for sharing so much of your experience with us. I learned much from the things you shared and will always be grateful for you along with so many others who helped me through my anxiety associated with BFS.

Having said that, I think it is time for me to say goodbye as well. I hope I have helped somewhere along the way. This place helped me get through the worst time in my life, and I want to say thank you to everyone who posted and helped. Hell, I'm even thankful for those of you I have argued and disagreed with. Chrissi is right though, at some point it gets hard to tell when you are helping or if you are even hurting someone in their recovery. The best thing that ever happened to me was letting go of my anxiety. Not just my fear of MND, but my fear of living in general. To those of you who helped along the way, I owe you a debt I can't repay. And to all the newcomers, believe what you read in the stickies here. That doesn't mean you have to give up on getting better, but the first thing you have to firmly implant in your brain is that it is indeed benign. Only then can you have the clear head needed to find ways to help treat your symptoms. Best of luck to all of you.

Frances

[Yuliasir]

But Chrissi!!!!
Me, I am the person you helped ALOT!!!!
Oh my dear, I am almost crying reading that. Yes many of our fellows have long and sad way to relief, but it is so individual... We n\almost did not talk personally but your story was a real shot of life for me!
I would like you know about that.

[volfan]

I, too, am sad that you ladies want to leave. I would just say it does not have to be all or nothing. Any contributions are welcome ones (I sound like the United Way, don't I, or the Red Cross). But it is true - I wouldn't want you to be emotionally exhausted by trying to help, but I would not want you to think you have to give up entirely on posting words of wisdom. On any given day some of us (me) really just enjoy hearing about your journey and more importantly we have come to view you as family. At least I have...... just something to think about. Vicki

[johnnythejet]

Chrissi-
You know I understand where you're coming from, but you need to realize a couple of things. Yes, there are people that ultimately will not benefit from constant reassurance yet think they need it. These are generally the people that post concerns about every little symptom even after they have all the evidence explaining BFS. Unfortunately, these are typically the people you spend the most time trying to help so it seems you aren't really helping. But for every person that fits that description, there are 10 others that have read your concise, insightful posts and MOVED ON. They aren't around for you to help anymore because they got the clarifications they need and got over it. Don't forget that.

[mwagner]

Chrissi, You were so helpful to me when my twitching first started, and I was so frightened. You were so reassuring and put so much sense into everything for me, and helped me move along. I'm so sorry that you are going to be leaving, and I hope it's not for long.

Frances, I also think you have been instrumental in helping people on here, and losing you will be a double-whammy because we're losing two people that help so many others get through their fears. Your very sweet compassion has been second to none.

I can understand your frustration at times, but there are many different personalities on this board. Some people truly struggle accepting their diagnosis and are more fearful than the rest. And, I reiterate what Johnny said - for every one person that you feel that you have talked to and can't reassure, there are 10 that you have changed their lives for the better. Just keep that in mind, that all your work and time spent here has not been a waste, it has helped so many.

Big hugs to both of you wonderful women. I'll miss you, and really hope you both return at some point, at least to check in on occasion.

Mitra

[SuziQ]

I am on this forum now for almost one and a half year. I have fought my beast and hoped to help others. But today I found out....it does not help. It does not help anyone to be told over and over they are OK. All the information needed is on this board in the basic articles, and the rest won't help. Every single person I tried to intensely help is now in a worse state than before. Not one person that REALLY took a long term benefit from anything said and done. It seems that the fear of this damned disease is just overwhelmingly powerful. Seeing how this fear is like a worm eating through the lifes of the wonderful, intelligent and warm hearted people I met here, is one the most shattering things I ever faced in my life. So I kind of retire , at least for a while, maybe I will have an idea how to help. If not, I just leave this note: ALL you have to know about BFS is in the old posts, like BFS in a nutshell. And for everything else: if this information and your neuros words are not enough for you, then you need to work on your anxiety. Make a therapy , whatever. Constantly seeking for reassurance is hurting you. And even worse: i feel that with every sentence I tried to reassure a scared person, I have done more harm than help. Because it hindered this person to take care for him or herself. And it took away time from my family and marriage without doing any good. This is my bottom line for the last months. Think twice about what you ask for and what you give, if it will be beneficial for any side or not..

Interestingly, I was just explaining to someone about how frustrating it is when a person we've tried to help "unravels" right before our very eyes. Ultimately, there is nothing we can do, and we just have to rely on the serenity prayer until folks finally grasp that they are ok!

Chrissi, I don't interact with too many people here because I try not to spend too much time on the computer, myself, but I can tell that you are a deeply compassionate and kind person. You need to take care of yourself and avoid getting burnt out, so do what is right for you.

No one ever mentions this, but there was one soul, years ago, who actually did take her life. It was devastating at the time and lots of folks here felt just...unspeakably awful. I don't even remember her name, but her family or friend came to the forum to thank us all, and oh, what a collective failure we felt! Could we have said more, done more, been more diligent? Would we now have to carry that burden of her hopeless choice, the rest of our lives? It still brings tears to my eyes, just remembering it.

As a nurse, I've learned (the hard way) that we can only do the best we can, at any given moment. When we are on the floors and have too many patients, and all of them have too many needs, we sadly have to prioritize unspeakable things, like, "I haven't gone pee since 5 am and it's now 6 PM and that weeping woman is just going to have to wait five more minutes before I give her that pain medication."

OY! Some days, we rock it, many days we flounder, but ANY day we serve our fellow humans with a pure, humble, and guileless heart is a day well lived, indeed. Whether we've helped, or whether we've hindered, it really only matters that we've been a caring vessel in someone's life. We just don't get to be everyone's superhero, much as we'd love to.

Take care of yourself, Chrissi.

Blessings,
Sue

[volfan]

Sue - that was a wonderful post. It really makes me (and hopefully others) want to try all the harder not to doubt the words of the senior (in terms of length of time...not age) folks on the board. Yes, we should come here to see if there are things others have found to manage symptoms; yes, we should come to vent because who understands us better than each other; yes, we should come just to laugh, cry, and share life experiences. NO...after the initial scare and getting the reassurance we need from folks like yourself, should we come back again and again and again and again (OK - maybe a few agains, but no more), begging for reassurance when we have been given that already. A little comfort maybe, a hug or two yes, but NOT the pleading for someone to absolutely tell us we are going to be OK IF(!) we have heard that a kabillion times. Present company excepted - when I need reassurance out of the blue, please provide. BECAUSE I am the exception. NOT!

[jorge]

Chrissi, you are doing a great job here and I really enjoy your contributions to the forum. The more I interact with people here the more I am in peace with BFS and trying to move on. Don’t be frustrated because you helped a lot of people. However, do not turn this contribution into an obligation that can stress you out.
Take care.

[Rtw]

Chrissi, plainslady et al. This board has helped me a lot over the past year. Last spring, it helped keep my sanity, and I recovered (not BFS wise, but mentally), until a recent neuro-induced flareup (talk about UMN without explanation). Also, please keep in mind that for all the posters, there are likely many many more fellow sufferers that take comfort in reading, even though they don't go through the registration process - indeed, I suspect that after reading the posts here, they recognize themselves and don't feel the need to post. If only the worriers post, the board will soon disintegrate - the calming and knowledgeable voices are truly needed. Thanks for all you've done in the past!

[leaflea]

Does anyone here have contact info for plainslady? I had a specific question for her and cannot seem to PM her. Thanks