Going through my email IN box, I came across a link to a post where we all talked quite openly about the effect that AF has had on us and the views/reactions of friends and family. I became absorbed with reading it all again and am putting the link to it here for others to read or re-read should they so wish.
So many posts in the link below from members who spoke so deeply and honestly regarding AF. We don't seem to have such in depth chats like this now.
healthunlocked.com/afassoci...
Jean
No Jean, you are right, we don’t have those in depth chats now. That is a shame. I have only quickly scrolled through and will read fully later. It was nice seeing some old familiar names and made me wonder what had happened to them. I hope they are well and Afib free.
Thanks for posting and will be good to read. x
Hi Frances
Yes, I quickly read some of them and thought how lovely it was that people had been so honest and open in their replies. A few that replied that didn't have their names were from Hoski, do you remember her? Yes, it was lovely to see all the old names there.
Jean
Hi Jean, I remember Hoski, she was lovely & I always wondered why she left the forum.
I always wondered that too, she was such a popular person on here and I can only guess that she suddenly died.
😔
What a great thread - thanks for sharing Jean. It takes courage to open up such a discussion and you did so with great tact and honesty. It’s obvious from the responses that exploring the emotional and psychological impact of AF together can be hugely helpful .
Yes, BobD said in a post said how he'd always been aware of mental health and it's effect on people with AF. Then lo and behold I happened across this old post.
Jean
Having any type of illness is depressing & I've suffered with my share over the years but being diagnosed with persistent afib & heart failure last year has knocked me sideways to such an extent that I can only talk about how I really feel with my husband. I still cry every day after 7 months since diagnosis & have no energy.
Four of my paternal aunts died from strokes.
One of them had suffered a major stroke in her early 40's that caused irreparable brain damage.
She spent the majority of the remainder of her life in a psychiatric hospital until another stroke finished her off.
I've had circulation problems all of my life that were never investigated by Gps.
My mum died aged 61 from a cardiac arrest, I'll be 60 this year.
I really resent having to take a daily cocktail of drugs but have been given no other choice.
I'm depressed, I wake up during the night feeling anxious & can't go back to sleep.
I don't want to take antidepressants because I've been down that road In the past & now wonder if they did more harm than good.
If I could live my life over I wouldn't swallow any type of drug, including the birth control pill.
I was so proud of myself when I weaned myself off of antidepressants many years ago, I avoided all drugs including those we take for minor ailments.
I feel like a failure now, both angry & very sad that my mind & my body have failed me so badly.
I also have mild psoriasis which has no cure, hashimoto's which has no cure, & eye floaters which have no cure.
I feel as though my life is over at 59. Feel overwhelmed with too many no cures to cope with.
High Butterfly. So sorry you feel like this all the time. I too am anxious and have been a lot worse since my ohs which was fifteen years ago. Have you thought about councelling? I have this on a weekly basis and if you could find a counsellor you feel comfortable with I think it would be a great help to you. But remember it takes time and is not a quick fix. You can feel better .I know it’s hard but we dont want to spend the rest of our lives like this. I don’t have friends who I feel I can confide in. I now live in France and made the decision to move because my husband wanted to live here and I can’t believe I made the move. It’s hard for me, being so anxious. That’s why I have councelling. Do you anything to help, yoga. Meditation etc and have you family and friends you can confide in? Please don’t hesitate to contact me if you want to talk. Just to have a rant or a cry. I totally understand how you feel. Please take care of yourself. X
Thank you for your kind reply. I think it's still early days for me. I'm not normally the type of person who allows myself to wallow in self-pity.
I was brought up by a wonderful mum who's mantra was always, "they're will always be those worse off than you, so pull your socks up, don't feel sorry for yourself & just get on with it."
What people don't seem to understand is the loss we feel when we are diagnosed, the changes we have to make to our lives plus the impact the drugs have on us,
( I'm taking seven = 11 pills 3 × daily that I know are contributing to the extreme fatigue, plus other side affects.
Despite taking anticoagulants we also have the worry of a possible stroke.
I can deal with that but what I can't deal with is the severe lack of energy.
I used to be the type of person who needed to be on the go,
my mantra was/is
" keep busy to be happy"
By that I mean physically busy.
- I was slim & very young at heart, always felt & looked younger than my age up until Bilateral Oopherectomy in 2012.
I've tried councillors years ago but didn't feel it helped at that time. I've been sent a link from GP for talk therapy but haven't contacted them yet.
I moved away from my hometown beginning of 2017, we moved to a rural village location, thought it would be the answer but we're now living an hour away from our daughter so feel isolated.
Husband at work all day so alone alot.
Tried meditation but can't seem to get into it. My daughter is moving to a bigger property soon so I'll be able to stay over & spend more time with both my daughter & my granddaughter who's almost five.
We intend to move much closer to them but bungalow we purchased in 2017 still needs alot of work before we can sell.
I know how you feel Butterfly, my mum died aged 60 of cancer she lasted 5 months after being diagnosed. I couldn't help but wonder if I'd live past that age. I'm now 74 and have minor ailments. After many years of scary fast AF attacks, I'm now in constant but with a bearable fluctuating rate of between 60-90bpm. It still makes me a little tired but I'd rather be this way .
When I feel a little down because of my ailments, I think of other people with far worse conditions. For instance those with cancer, Parkinson's, people who have had a stroke and can't move or eat, those who have lost limbs, their sight or hearing. How lucky are we to have a condition that is not apparent to anyone else.
Once when a teenager I was working in a pharmacy when a man came in and he had almost half of his head and face missing. I went dizzy with shock, not since that day have I ever seen anything so dreadful.
You are not a failure, you didn't bring any of the conditions you have onto yourself. As we get older, we can decline in health, nature appears to want to slow us down.
You are so lucky to have a companion in life who cares about you. A lot of forum members here live on their own. Why not sit and make a list of all your blessings and concentrate on them.
Sending you a big healing hug.
Jean
Hi again
I read some of the commentary and I dont think much has changed when reading the anxiety, stress , depression on this forum about AF. What is true is organized cardiology / EP are in my humble opinion not receptive to new ideas outside their specialty. I will refrain from explaining why I make that statement butvanyone interested can read my BIO.
‘Hug your heart and someone who needs a hug’
Hugheart
I love your phrase, 'Hug your heart and someone who needs a hug'. We had a lady on this forum many years ago who would put her hand gently over her heart when in AF and talk to it, saying everything was ok. She claimed it calmed her heart down.
Jean
Thank u for commenting about my phrase. It is meant to be kind to your heart by trying one’s best to eliminate unhealthy lifestyles and becoming more proactive seeking help and not allowing negative emotions become overwhelming. My BIO explains the latter.
Hugheart
My inheritance for my kids (I hope!) will be to be wary of consulting regular medics. Yes, they are great in emergencies but for more holistic long term good health you need to look further.
I used to be called ‘black crow’ on here and I looked for my comments- I am called ‘hidden’ on that thread JJ!
I was quite candid back then…. I spose as the years roll on, you kinda get fed up talking about AF.
I still think of it as ‘Stupid AF’ 😃
True at times you do get a bit fed up talking about AF, but my heart still goes out to those who have frightening attacks. I think it's more worrying for people who live on their own too.
The forum still helps immeasurably for new diagnoses… loads of people on here helped me. Still do when I have a flip!
Why did you get fed up talking about Afib? Thanks.
I do think the mental health aspect of a diagnosis is perhaps the worst part, difficult to make plans because you never know when it may strike, too expensive to get travel insurance so foreign holidays are out and that makes me feel guilty because my husband would love to travel more. Waited our whole lives to be work and child free and now can't even have a nice holiday or visit our son who lives abroad. For me , the fear of hospitals is strong too and dread the trip to A and E if I don't self convert. No doctor covers that aspect, they are only interested in physical symptoms.
That's so true what you say Lupaal. This 'prescribe you a pill to try' and then send you off not to be seen by a heart specialist again for many months is not the answer. Surely they should want feedback on how your heart is behaving after a week or two.
I too had envisaged a nice retirement going out with walking groups and growing my own veg. It wasn't possible though and waiting in A&E is enough to keep your AF going.
Jean
Yes, mine was first diagnosed after a bout of covid, at the time you weren't allowed anyone with you. I had no idea when the ambulance cared me off if I'd get home again as thought I was having a heart attack, husband wasn't allowed to come with me etc. I am still very nervous of going anywhere alone, every twinge you wonder what's wrong this time. Also have hypothyroidism and a few minor complaints. Life is scary and exhausting at times. All the family just think you're back to normal with all the pills but it doesn't work like that and I've never seen a cardiologist in person because it was all phone calls and letters when I was diagnosed.
thanks for sharing that thread! As one of the newer members on this forum, I’ve been so impressed by the honesty and care offered, which have really helped me get my head around the diagnosis as well as suggesting strategies to help cope. It’s reassuring just to know you are all there!
Yes, we're always here to help if we can. These days I find some of the posters are so technical when giving their heart results I have no idea what they are talking about. How times have changed.
Jean
This was before I found out about this site, so will be interesting to read all the 159 replies when I have time. PAFib caused me a lot of anxiety. Being on here helped me and also the advice given to me re ablation, helped me to go ahead with it. So glad this site exists. Helpful people and advice and you realise you are not on your own.
It's a great site isn't it and I've learnt so much from it too. Also it's comforting to hear that other people have experienced the same heart complications as we have.
Jean
It is good to know you’re not on your own with this. My neighbour has just had her first episode of AFib. She is an avid cyclist and goes out for 50 mile rides, regularly and developed this after her last cycle ride. She’s hoping it’s a one off., but we all know on here, it probably won’t be. I told her to talk to me if she needs to, if it comes back. I shall tell her about this site, if she gets another episode. I hope not, I wouldn't wish AFib on my worst enemy.!!
Personally I have tried and failed to understand the root cause of the condition all this time, this frustrates me. There are so many factors at play, not least the hearts own recovery systems, that make it almost impossible to work it out. Certainly, having been relatively free of the symptoms since my ablation 6 years ago has given me a different perspective. We tend to think the condition is far more serious than it is when we suffering the symptoms and understandably so as the symptoms are horrendous and will effect your mind and that of your family. Also the condition can deteriorate to a serious condition if left unchecked so getting the right treatment, or effective treatment is essential and different for all of us. Finding that after a traumatic blanking priod that I am now able to live a normal (nearly) life was a great weight lifted and as I have said in earlier posts far better than winning a Euromillions Jackpot. I will never forget how scary and dibilitating the condition is. Good news for those joining this forum is that there are an awful lot of people on this site that have had the condition for a long time and are still here in their 80s and 90s so take "heart" (no pun) in the fact that your condition can be fixed or at least improved sufficiently to live a near normal life, but it can take time.
Wise words from you, thank you.
No give me the Euro millions and I'll fly out to Japan and get cured like Saulgar who's a member of this forum. I've had 3 RF ablations and been told that I wont be offered any more. Was it an RF ablation that cured you?
Jean
Yes but not totally cured, I still have MAT, which raises its head occasionally but very manageable and never lasts long and not really debilitating like before. I think the success is more to do with the EP hitting the spot rather than anything else, unless they have something new in Japan! The skill of the EP can make all the difference.
Thank you for sharing Jeanjeannie50, it is so true how having AF can impact our entire lives, so it is important to seek the help and support we desire.
We are hosting an online coffee morning on Monday 18 May 'Living with an Arrhythmia with Advice on Managing Mental Health', so please feel free to register and join us. To register online, please visit: heartrhythmalliance.org/afa... or contact the Patient Services Team via our dedicated Patient Helpline: +44 (0)1789 867502
Kind regards
TracyAdmin
Hi JeanThis is my first response on this forum of which I find so helpful in helping me cope with my heart conditions.
The post you have just shared has made great deal of sense to me.
The fact that our heart condition can have a massive impact on our mental health sometimes can go under the radar so to speak.
What great post ,I've been reading it thoroughly and found so many similarities with how I'm suffering physically & mentally.
Thank you
Hi Penneyforthem
I love it when we have our deep talks on this forum. We can sometimes think when seeing a post someone has put on that also relates to us, thank goodness I'm not the only one who thinks/or gets that. It can re-assure us that we are not alone with what AF deals out when it strikes.
Jean
Wow - Jean thank you and all the others on here who have been involved with this for so long and have helped so many- me included. I do believe that this needs to be talked about openly and the way this affects mental health which for me was probably quite mild but I’m very conscious I backed away from life at various points almost subconsciously as I have a great ability to adapt but that gift holds a downside and results in you not fully realising how bad you have become over a period of time- Many thanks from me to you and many others here - you’re openness and good sense is truly priceless 👍
Thank you for your kind words MWIC.
All that I know has been learnt mostly from others on this forum and my own experiences with AF. I came onto this site just before my second ablation in 2013.
I did go on to the previous Yahoo AF site but a post on there at that time made me think that it wasn't for me. It wouldn't be appropriate to talk about it on here now either.
I do like it when we have our deep conversations on this forum, it helps us understand what others are going through re this hateful AF. I hope that through our talks we will one day hit on the cause as to why some get it and others don't.
Jean
Excellent post Jean.
Thank you Meadfoot
It's nice when we dig a little deeper and find that other peoples posts, on this forum re AF, make us realise that we are not alone in what we are experiencing mentally and physically.
I remember only too well the nights my heart felt like a large flip flopping fish in my chest. I honestly used to think that I'd be found dead next morning. Here I am though 20 years on from my first attack and still very much alive. I did all that worrying for nothing. My constant AF is now between 60-90bpm which is fine, but I will never forget the fear I felt when having bad attacks.
Hope all is well with you now.
Jean
Like so many others, I received no counseling concerning afib's threat to my health and life.
The first 3 times it hit, I went to the ER, assuming it was good to be there if my heart stopped. On one occasion, the over-worked ER doctor got irritated because I couldn't decide whether I should have cardioversion. (My doctorate is in music, not cardiology!)
Another time an ER doctor came in and said rudely, "Why are you here?"
I finally figured it out when they sent a very nice doctor in the 3rd time who sat by my bed and talked for a good 20 minutes! She had nothing to say about afib, but was very interested in my life in general. How nice! I realized later that she was a psychologist there to diagnose "factitious disorder". I quit going to the hospital with my afib! All I needed was the reassurance that, barring symptoms such as chest pain, dizziness and breathing difficulty, I was better off at home.
Clarifying, supportive counseling would be nice to mitigate some of the fear and anxiety we get when first dealing with afib. Maybe they will figure that out, soon. In the meantime, Jeanjeannie, you should put together the "New Patient's Guide to Afib", posted regularly on the forum. This is a great start!
Oh dear, sounds like you came close to being locked up!
Experts who haven't experienced AF have no idea whatsoever what it's like to have that condition. I think for anyone to do counselling on any subject they should have experienced it themselves.
Jean
...like going to unmarried clergy for marriage counseling!
Thank you for sharing this!
Anyone know about AF scarring from Fibrosis and scar tissue from ablation. How they differ and how the heart may re-model back to normal?
Cost of ablation for AF in the UK
In and out of AF during the night.
Light at the end of the AF tunnel - a success storyStill new, in a rough patch in the mental game of AF
