Scared

[atrialfib]

I understand we get worried and support is good,but I read someone's post on here,who went into great detail giving results, just made me think , not healthy to get so consumed,we need to get meds or whatever we decided to do and get on with it,not keep it constantly alive,feeding the worried.

[Jo-hannah]

We all cope in different ways and we can choose to take out of this Forum what we like and to leave the rest. I like to get on with it and not dwell too much on my condition but I tell you I am very grateful to pop back when I am anxious,alone and fearful. I can't thank y'all enough for all the help and support I've received from the posts and from my faithful friend on messages...I am back today in a big way as I had an episode which landed me in A&E this week....but first I had to message my faithful friend....Fond wishes to you and to all on the Forum.

[BobD Volunteer]

We all deal with things in different ways. Yes I often think that it would be good if people were able to not obsess which is why I worry about things like Kardia in some cases as it is all too easy to become hooked on checking all the time. I know only too well having been there. For others it may just be sounding off./ having a rant etc. Others still are terrified and need out support. Few GPs have sufficient time to address these worries although there are some wonderfully caring ones out there.

If you use this forum it is easy enough to not answer or bother reading posts which may offend you.

Yes it is important to move on and live your life as best you can since it is the one you have now! Most member eventually learn to do that I think. Having been here since Noah and I were at school together I see a trend of terrified people arriving and constantly asking questions and worrying . Eventually having learned all there is they move on and often end up supporting others. One early member was so scared that they wrote a new will., put their affairs in order and was convinced that death was just round the corner. That person is now an occasional volunteer.

We all have options.

[rosyG]

I don't think people who give a lot of details are trying to keep things in their mind- I think they are worried and want to get advice and you can only get advice from people if you let them know the details. I agree with most of what Bob has said- except about Kardia- I don't use it until I have an episode of AF and then make a recording to show if I am bad enough for a and E.- so I find it useful- however, I did work in the NHS in a former life so don't think I worry about devices etc.

Just do as Bob suggests and ignore posts that you don't find helpful- but don't deter others who so need to set their details out so they can get help from the people, like Bob, who have many years of experience and who are kind enough to give their time and knowledge to others- tis what makes the world go round!!

[Hidden]

I can understand that people worry, and as for obsessiveness, my running, cardio sessions and body metrics were recorded in meticulous detail. The stroke taught me that statistics and good or bad metrics may not count for anything. I've had poor diagnostics and care from the NHS and literally life-saving and wonderful care too. I'm grateful to the Health Unlocked AF and Different Strokes communities. I've learnt much here, warmed by the empathy and time taken by you all to reassure others. Hopefully I can give something back at the risk of trotting out stuff that I've mentioned in the past. You guys are filling a much needed information gap.

[Bagrat]

I have often suggested that if something is occupying your mind and excluding all else a good way to shift it is to write it down. Options include putting it in a drawer for a few days or setting fire to it!! This forum is a way of getting concerns out of one's head and onto virtual paper with the added plus that people will respond and offer support. Off topic but this works particularly well if an issue with another hooman is winding you up. Write to them. DO NOT SEND. In a couple of days read it through and bin it

[Pam296]

I think Bob sums is up perfectly. I was totally obsessed with all things AF when diagnosed in March. I must have virtually worn my blood pressure monitor out. A few months down the line, I am still learning but have moved on from being so scared I was investigating funeral plans. I think it is a natural reaction to want to know as much as possible about a newly diagnosed condition. We all deal with things differently.

[Globe-J]

All well and good. However, please do not speak on the behalf of others or try to dictate

J

[rothwell]

For a couple of months now I have had terrible knee pain which painkillers don't seem to shift...osteoarthritis doctor says...so have now almost forgotten that I have AF! That's life!

[irene75359]

Interesting. My daughters thought as I check the forum daily I was getting obsessed. Actually, nothing could be further from the truth. In the early days after my diagnosis I could think and talk about nothing else for about six months. The forum was an absolute lifeline for me in reassurance and comfort. Then gradually life got back to normal. But I still get a daily update, absorb new and interesting information for future reference and occasionally contribute. But crucially, the choice to get these updates is mine.

[bushy2016]

like most of you say..people deal with there AF in different ways...I too when first diagnosed with AF....asked questions and was constantly thinking the worse...

when I read a magazine...newspaper and start to read an article, that doesnt interest me...I STOP reading and move on...i prefer pictures...im too lazy to read ❤❤❤

[Terjo]

This forum has been a real help to so many people. It's here to inform but also to comfort and cry to when there is no one else to listen. I've found it to be such a wonderful place to receive support and help. Thank you to all the supporters and contributors over the years. Terjo

[WendyWu20]

AS an ex nurse I can do all the medical researching about AF I care to do - but what I've really gained from this site is shared experience. This shared experience cannot be gleaned from medical sites, doctors, or research articles, and it is a great support to know that other people feel as lousy as I do, and as frequently, even though we're medically labelled as having a chronic, 'benign' non-emergency condition. Its also a great help to hear about other people's experiences of a wide variety of medications and treatments - especially ablation, which I'll be having in the near future.

I agree that it can become an obsession when you have disabling symptoms on an almost daily basis. However, I don't feel that reading and responding on this site feeds into that - the positives outlined above, far outweigh the negatives. I allow myself a quick 'indulge' in this site, then have got into the habit of catching myself every time, if I begin to think about the AF at any other moment of the day. I have a quick word with myself, then make a conscious effort to channel positive thoughts and energy :o)

[souljacs4]

This site is so varied from meds to exercise our emotions our diets trips to the dentist, and our travel experiences and so much more. But the thing that means the most is the support I would be lost without it.

[Buffafly]

I think you are referring to Juggsy's report on his experimental procedure, which interested many of us. We know that he had a very difficult emotional journey but was brave enough to sign up for a new type of ablation, thus adding to scientific knowledge about AF treatment which may help us in future. I'm happy to be obsessed by such an inspiring story!

[cassie46]

I agree with Wendywu - it is the shared experiences that are most helpful, from drugs to procedures. When I first knew I had AF I looked on the internet - found loads of medical information and facts about it - but not until I found this forum did I really understand what AF really is and all that goes with it. I have a very nice GP but they do not have a great deal of knowledge of AF, espcially the side effects of some of the drugs, often I have been told they are not aware that said drug has that side effect so must be something else. Come on hear and you find it is quite a common side effect, so puts your mind at rest. Same for some of those odd feelings that some of us get like doom and gloom or something awful is going to happen, again found on here that it is quite normal so when I feel like that I just ignore and get on with it.

Also the treatment for patients with AF can be very varied. Some seem to be lucky and have exellent treatment from day one, referred to EP quickly ect. Others seen to be left with their medication and no decent follow ups are made. My treatment has had a lot of ups and downs no one would refer me to an EP. From this forum you can get so much help and information on how to go about getting the best treatment for you.

Three cheers for the forum and its volunteers (espcially BobD)

Cassie X