Just a short musing. I thank goodness for this site as it has made my life infinitely better and bearable simply be sharing, but more i

Can and do benefit hugely from the knowledge and patient explanations and help given by the wonderful volunteers, who are continually there to support in understanding this frankly sometimes terrifying condition. So it irks me hugely to read the sometimes almost impolite posts that are very unnecessary, unhelpful and dismissive towards these brilliant volunteers. My advice to those who seek help, is that unless you are prepared to listen to the advice by those who know better, stay away, and let the volunteers carry on supporting those of us who truly appreciate and need them.

Peace and love!!

15 Replies

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  • I wholeheartedly agree - this site has helped me so much and the information is invaluable. Often all we need is some reassurance and encouragement from others who understand what we are experiencing.

    Take care

    Marion

  • Being listened to with a sympathetic non judgmental ear is comforting and healing for the heart and the soul.C

  • There is a lot of support on this site for which I am extremely grateful. Unfortunately not everyone thinks before they post. Everyone's experiences are very helpful as AF rears its ugly head in so many different ways. If various foods or situations trigger your AF please share, every little piece of information helps. Some replies I have read, and I will not go into details here, are absolutely uncalled for and upsetting I know on one on my posts I had a reply that I objected to as it was something I was personally having a battle with, of course the person who posted it was not to know that but none the less I found it upsetting. So please think before you post your opinions as opposed to what you have actually experienced. Don't want to upset anyone, these are just my observations.

  • I understand the need for a shoulder to cry on or just an ear to listen but sometimes people do loose sight of the reality of this cruel world.. When you start your AF journey it becomes the whole of your life to the exclusion of everything else and this is very bad. We all need to be supported in some way or another but this may include a reality check. occasionally. When I started my journey ten years ago there was nothing so every little helps.

    Bob

  • I think this site is fantastic too, and I don't know where I would be without it and the volunteers who, as you say, are wonderful. I think the thing they bear in mind always is that some of the people who visit this site are anxious beyond belief, wound up like a spring by having this condition, and that occasionally something may be taken amiss for reasons nobody but the sender may understand. I am glad that they manage to take it on the chin, for all our sakes, because I depend on their wisdom some days, just to keep me keeping it real.

    Being a writer, I'm also very aware that sometimes, something you write can be taken very differently to the way you intended it. That's the trouble with words, you can't always sense the caring intention behind them - if the same thing was said to you, you'd see it straight away. It's the reason my posts are infested with a plague of smileys! :)

  • Well said Eatsalottie, I would hate to think anything that I had posted has or would cause offence, not that I am a volunteer.

    That doesn't mean that I will always agree with the opinions of others and I enjoy an argument, in the literal sense of the word! But hey we are all different and I respect difference.

    (Sorry but smileys irritate me but I do agree with how something can be read as the written word fails to convey tone and therefore understand your reasoning for using them).

    I also think we shouldn't become overly sensitive to some posts which may arise from an indirect way of expressing frustration. My experience on this site is that it is very well administered and I believe the volunteers are robust enough to be able to cope with a wee bit of critical feedback and certainly honest, caring and open enough to hold their hands up and apologise for any un-intended offence caused.

    My personal thanks and appreciation to a all the volunteers for all their dedicated work and input, they have helped me a lot.

  • Dear Annaelizabeth without knowing the specifics I don't really know what you are talking about, but I can make a wild guess.

    May I offer you a very gentle challenge? How do you know that the volunteers know 'better'?

    They may and they may not. But whether or not I agree with their offerings, I am grateful for them. You are right that this is a worrying condition which induces great anxiety and people do need reassurance, kindness and support, challenge and information. And I always promote autonomy, I truly believe that you are the best expert on you, others may just have a little bit more knowledge, training and experience but your innate inner knowing is what is really important.

    Said with loving feeling in my heart.

  • CDreamer ... Well said ..I agree with your post.

  • Well CDreamer, I certainly know that the volunteers know better than I at this stage of my journey, I certainly know that when I wobble and get frightened that I loose the ability to judge my 'innate inner knowing', which is when their detached calm support is what I need and why I turn to them. We are all, praise jah as they say in the WI, thankfully different. My musing was simply that, a musing, seems to have provoked quite a discussion - good fun!!

  • It is fascinating to read everyone's perspective. Eatsalottie has made an excellent point. Just like in an email it is easy to read these posts and take them in a way other than what the writer intended. As my kids would say, "Everyone needs to chill" :-) Having said that, I appreciate that we all come here, eager to hear a story that eases our fears, calms our hearts (literally), and gives us hope. We have different backgrounds and levels of expertise; maybe we have a medical background or we don't; and we agree or disagree with someone's approach or the type of treatment they want for themselves. It is good to remember that every story is a little different and we are not walking in that person's shoes. Who knows how many other stressors are complicating (or causing) the AF? I try to to meet people where they are in their journey . I try to assume that everyone is doing the very best they can on any given day and we are all just here to help each other. I am most appreciative of the conversation and as always wish for all of us to BE WELL!

  • Thank you Annaelizabeth

    I would just like to tell me short story, when I was diagnosed in Nov 12 and then the whole flurry of doctors and hospitals appointments, I literally thought my life was about to end, I re-wrote my will even wrote letters to my children, and starting putting my limited affairs in order. There is no doubt that from then until around the end of Jan 13 was a very difficult 3 months, I was very depressed, angry, upset and really really scared.

    Then I found the Yahoo Group, and slowly with BobD and others they managed to convince me that maybe this was not the end, and that there was life with AF. I didn't always listen to the good advice, I still have the heart rate monitor Bob told me not to buy, and he was right I used it for maybe one month and then found it was of no use at all. But above all they gave me back hope, when honestly I had lost sight of that completely.

    When this group started around the same time, I always said, no matter what happens to me even if I am "cured" I will offer anyone else who felt the way I did some support and comfort in my limited way, and that's why I became a volunteer. I am not medically trained, I have no more knowledge than anyone else, but I have been there, felt it, and know exactly just how scary that diagnosis is. I simply try and offer my limited communication skills in supporting people at a very fragile time in their lifes and I would like to continue to do that as long as I am useful.

    So thank you for this post, I like to think that occasionally I make a difference, even if occasionally I also manage to annoy someone, "occasionally making a difference" sounds like a pretty good way to carry out one's life if I am honest.

    Ian

    PS sorry about the smileys CDreamer, it's my lack of written skills that makes me use them.

  • Believe me you all do make such a difference and although you may not be medically trained, I've noticed that you always try to be armed with recent information . Sometimes when I am in the middle of a crises it's good to have an informed voice of reason. Also I have noticed that you all seem to compliment each other in your style and personalities whilst all singing from the same sheet! Thank you and keep up your good work please.x

  • Chuckled when I read your heart rate monitor story! I have just gone through exactly the same process. Well,we tried, we wondered and now we know lol!

  • Hi Beancounter, the only smiley you need is the one on your face, which we see on your photo. Thanks for sharing your own journey which is truly inspirational. Regards and thanks for all your input.

  • Well said Annarlizabeth! I too find the site helpful and supportive. Each of us is different and AF is with us in all sorts of different ways. We may read some stuff which we cannot identify with then someone will make a comment which rings true for us, or sets off a 'lightbulb moment". Invaluable support and grateful thanks to all involved x

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