I posted the following in a different thread, edited a little for this post to make more sense. I felt some might not have read it there and might be interested in replying. I wonder what others' views are on "being strong" when faced with illness, well - arrhythmias in our case (for some daily, maybe hourly, maybe constant... ectopic beats, AF and AFl)? It was in response to an idea that too many people let their heart problems rule their lives.
I remember that my father was very proud indeed of never seeing his doctor and rarely complaining; I have to say it made my poor mum, struggling with the severe pain of arthritis and frequent heart palpitations (undiagnosed) daily, often feel belittled. And yet, I wonder where the truth lies? Are some lucky to have been born with a stronger constitution in some yet-to-be discovered way - or were they brought up differently, perhaps? I have never subscribed to the strong and weak metaphors - but maybe I am wrong.
My now 90-year-old elderly friend with permanent AF has always said of himself, "I don't let myself get down", for example. Much like my dad might have said, I suppose. That man's late wife daily struggled with staying "up" during her latter years of physical decline and I used to tell him off roundly for saying such a thing to her. It clearly belittled rather than helped. I would say, she never once "let herself" be "ruled" by her illness, or had much realistic control over the "low" feelings she had.
My own experience of arrhythmias, recently now becoming daily rather than infrequent is that they can be very hard going at times - very hard indeed. Frightening to the core, in fact, at times. And yet, in between - and even during - those times, of course, I get on with life as best I can (for example, still tutoring GCSE and A-level English most days). All of us, I should think do our own version of this as best we can, not just the "strong" ones and, when we can't, well, are we "giving in" and "letting ourselves suffer", i.e. being "weak"? I even managed to fit that aging friend's small hallway out the other day with carpet tiles after it was ruined by flood damage a while back. I can't tell you what my heart felt like at times during the job, but I am here to tell the tale.
What do you think about "strong" and "weak" as a way to think about others? If asked, I'd have to put my hand up and say I err on the "weak "side.
Steve
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Interesting in that pretty much repeats a post I did some years ago where I offered that we all have different levels of acceptance and ability to cope but to a great extent I think it depends on a person's outlook . Many of us when first diagnosed think their lives are over but should soon realize that it isn't though yes it has changed. "I want me life back" was a common cry.
Whilst in my early days of AF I was still very active in motorsport engineering and often ended up working through difficult times. I remember changing a gearbox on a rally car in mid Wales with a HR of 180 and then driving back to Devon (my son who was with me was not then old enough to drive.) This was not strong or weak, merely necessary determination. Obviously I did then spend some time of R and R.
Perspective also plays an important part. I found I was far less concerned about my AF when diagnosed with cancer and it made me realize that AF was merely an inconvenience not a life ending disease. That I beat the bigC I think was a combination of good doctors and self belief. The weeks and months of incontinence following the operation could really bring one down but time is a great healer and after about nine months I could joke about it . I always said I thought they told me I would be incompetent and omnipotent. lol 😁
There is no doubt that AF and anxiety are good bedfellows. When I was on the BHF Arrhythmia Nurse development committee I campaigned for psychological assistance to patients to be included in the training but sadly this never happened and we see so many people joining us suffering acute anxiety . This does not appear to be gender specific either before anybody thinks so. Breaking the cycle of cause and effect would need a magic bullet for many and it can be hard to see the fall into despair which some experience.
I wish I knew the answer. I do think that with the spread of the forum's cover from merely UK to other parts of the globe we have seen an increase in anxious members and again this could be social norms. After all there are still some English stiff upper lips about though I found it darned difficult to eat with one. .
That was good to read, Bob., and thanks for replying. I have pressed on with things with a high heart rate on a few occasions. The problem with this malady, and I don't know what others feel, but there very occasionally comes times when there's a kind of "rush" of hotness that brings me to feel it might result in something unpleasant - a strange old thing but I wouldn't want to be doing anything important when that happened.
You comparison with having cancer is a personal one and a useful one. I wouldn't want to go through that, being a born worrier.
I understand the attitude of just getting on with things and always attempting to do things - even if you have to change the way you do them - to what extent you do them, and for how long. I also know how hard it is to change when you are used to being so highly active - that in istelsf depresses me at times - even though I am generally an optimist. My attitude is just get on with it. Thankfully, my wife tends to be a little softer in her attitude to me and my problems - but not with herself - interesting? However, I do think there are times when you have to give in and be just a little sorry for yourself maybe and take time out. It certainly doesn't help telling people to "get a grip" when they really are, physically, mentally, and medically not able to. I don't think we give enough thought to how much just the medication for an illness can affect people. We really need to be kind and instead of saying things like either "get a grip" or "buck up" we need to say things like do the best you can and then we'll sit down and have a coffee. It's possibly harder with the people we are closest to because we are so used to them "being their normal self" that when they find the need to change the things they do because of either age, illness or both we become a little well, pompous and dogmatic in our attitude to them and don't give them the encouragement and space they need? You can have an optimistic view and always be looking on the brighter side but still feel a little depressed and down at times.
That was a very warm-hearted reply, Des. Like you, I have always been an optimist and, realistically, life has to go on, anyway, as you say. We really do "have to get on with it".
An interesting post and a nice reply from BobD. I personally rarely use the language of being strong or weak within the context of suffering. The word strong can be interpreted as being more noble while the word weak has a pejorative tone.I note that an internal locus of control and self efficacy are both important concepts within the field of mental health and recovery. Both factors are highly indicative of better outcomes. I think that people who have a fair d degree of self agency and an ability to accept some suffering tend to do well when dealing with adversity. To my mind this certainly applies to Afib.
Thank you. We are all different, as we read too often in these threads, I suppose. It's very difficult to know when a person should "try harder" if they aren't doing, and just what can be done to encourage them.
What an interesting post Steve. I'm one of life's copers. I tend not to worry about what I can't change. I rarely feel stressed and have a happy disposition. BUT I'm emotionally moved by what's going on around me in the world and easily moved to tears.
I'm sat at hospital waiting for a friend who's having a small skin cancer removed. On the drive here I was telling her about the film Lion and had to fight not to cry as I told her what it's about.
I did do a bit of the headless chicken act when first told I had a heart problem (AF). If I told you what the lady cardiologist said to me you would understand why I did that. Though I have told the story of her on here a long time ago. Will PM it to you.
I look forward to reading that, Jean. Thank you. You have posted a few times in what, I now guess, were moments of more than usual anxiety when you must have been feeling far from well. These were times of not seeming to be coping, I imagine? I suppose I am a "coper", too, but, well - I don't know: I'm not too sure about that word either, these days. I seem to be understanding too many points of view to be able to know what is what with others (or myself), at times, as I get older!
This is most interesting having worked for 20 years as a CNS in Palliative Care, my stance is skewed. My pet hate from friends and rels is "be strong!".Everyone does the best they can with the coping strategies available to them on that day, (hour, minute) I always supported anyone's individual attitude, but always encouraged them to have time off to let it all hang out, in order to regain energy and composure.
Living with long term issues, whether the person going through it or rels and friends watching, can be exhausting.
Another issue, slightly off topic is that any decision re treatment etc should be what the patient would like/needs, not the relatives or friends.
Thanks for that. My daughter-in-law did her extra degree in that at Warwick. It is a tough job to do, dealing with slow decline and, well, death.
Your comment on treatment is interesting. Doctors these days seem not to want to take charge, as it were, and ask the patient what they want "doing". That seems perverse to me. I always say, well, doctor, imagine I am you or your close relative. What would you do?
I find that a strange stance too. They have trained for years to know more than we do. Yes put 'em on the spot " what would you want for your Mum/Dad?"Yes the patient should be an integral part of the "interdisciplinary team" and be heard and involved in any decision making, but, in the end it is the doctors, after discussion with all concerned, who should offer thebest option, and respect the patient's response!!
After all the heart tests because of my aflutter diagnosis, I finally had my first appointment with the cardiologist. I told him that I am usually a calm and quiet person, but when I experience a high rate of flutter, it feels like my brain does a complete turnaround. His reply was, "Yes, you are not alone. That is a common mental presentation with a high rate of flutter/afib." He then mentioned that it can often be mistaken for anxiety. Thank goodness he said that, because I thought I was “weak” or just not as good as the person next to me who seemed to be "okay" or "strong".
For years, I had cared for both my mother and a close friend, both of whom experienced gradual heart failure that eventually led to stroke and, sadly, dementia due to afib. I have seen the effects of this condition in a few at its advanced stages. This is always at the back of my mind and can cause a sense of worry-tinged anxiety each time I experience flutter. However, from my carer experience, I also recognize the importance of living in the present moment and planning the day for some form of joy. Some days I'm "weak", other days "strong". Depending on life circumstances. it can change, for a better word, in a heartbeat.
Much the same as I feel, Fraser - although I am not (inwardly) a calm person, I suppose, or at least, there comes a tipping point where the fear takes over from the rational. Not that I panic and am known to cope and remain patient. I was told the same as you were about the mental response of anxiety to heart arrhythmias (AF, AFl, palpitations, etc.) - that it is entirely beyond our mental control.
Strangely it is only now reading others replies that I thought of my current difficulties of arthritic pain in both knees and ankles along with SOB which makes walking more than a few yards quite challenging sometimes.
My wife ignores me saying I have always got something wrong whilst I struggle wondering how well I an coping and if I am a big baby. Until some doctor looks at my xrays and asks how am I still walking one never knows. At least I know I am bad enough to have a blue badge after spending a morning being checked over by a lady who gave nothing away.
It maybe wasn’t intended to, but your reply made me smile!
I should think a sense of humour is a key requirement to keeping going. I could do with a better one but my favourite song is “Always Look on the Bright Side of Life”. I used to do that constantly but it’s less so now that age and ailments creep on. Sitting with heavy palpitations does make life quite hard going, but there were are.
Your original post and the rest of the thread makes very interesting reading. I come from the "why me?" brigade. We thought we were so fit and doing all the right things, but maybe our overenthusiasm for endurance activities (for me mostly cycling) was part of the problem (also in my case probably a genetic factor as well). Anyway trying to come to terms with the original diagnosis and not being able to continue with what I've done all my life was something I am trying to come to terms with myself. Apart from the folk on here nobody seems to really understand what that means. The breathlessness, fatigue and general weakness; the not knowing how you'll feel on a particular day making you feel unreliable and that you let people down. For me I seem to get anxious about silly things which affects how much I take part in things. Where do these feelings come from? Are they caused by the AF or do they themselves make the physical side of the AF worse? For the most, being by nature an introvert, I keep it to myself, but thank heavens for this site.
Well - I couldn’t have written a better post to explain things. We can sympathise with each other over the miles that separate us! I’ve never been as active as you, though. It can be a lonely and strange life, for sure.
Up until recently, my symptoms were not so intrusive but now they are much more so. I’m awaiting the results of an MRI that might give me more answers but, essentially, my cardiologist says that I need an ablation because my atrium is misbehaving causing AF and multiple ectopic beats, with symptoms being exaggerated by a bundle block (LBBB).
As you so perfectly point out, planning ahead and feeling sure of being able to do things can be compromised and stressful. The worst for me , really, is being less able to play with my six year old grandson - football and racing!
So, I think that I've coped with AF pretty well so far. Disliked the whole hospital, doctors, pills business and have been fortunate not to have suffered 'attacks' at all. But, overall, believe that I've been 'strong'. But..... next month, I finally go for a full knee replacement. So far, I've been mostly gung-ho about it... "yes, I know it'll be painful but I'll do all the exercises whatever." "I know everyone says it'll take three months to recover, I'm aiming for two, maximum", etc, etc. I wonder? This will be a test. I will go in to the next few weeks trying to beat the system, amaze the docs with my pain threshold and recovery rate, and be back driving and playing golf quicker than anyone expects.
I haven't known anyone recently have anything but success from knee replacement ops, and, oddly, I have known a few. My next-door neighbour is a case in point. He is doing really well, walking normally without pain. He knows that he really must lose weight, though, or he will be putting it at risk. He's a big chap!
I can relate to all I have read, having had P/A/F for over 30 years, I see echos of my answers over the years but I absolutely refuse to waste my time worrying about my death, at 80 I've had a good innings, raised a family, travelled the World, held down a professional job until A/F caused a stroke and gone on to achieve other things despite bloody P/A/F, surviving cancer (refuse to give it a capital letter), breaking my hip playing table tennis two years ago and so on. Ive lived a good life, been married 63 years this year, what have I got to complain about? Yes, ive been stressed, yes I have known fear but a life is for living despite what it throws at you......am I strong, no I don't thinks so, am I determined and stubborn, oh yes indeed. have I got regrets, of course but I consider myself lucky because they are few. One last thing, I was brought up during my formative years by my Grandparents, they brought up 5 children of their own. My Grandad fought in the First World War. They were down to earth, balanced and knew right from wrong, respected others and just got on with their lot......I think a lot of this they instilled in me for which I am forever thankful.
My upbringing, with parents rather than grandparents sounds so similar to that which you describe, part of a secure and loving family with parents who were open and straightforward with no pretence or deceit. Those were good days, spent, when not learning at school (most important to the parents), playing in the street or nearby open countryside (most important to us children).
your attitude mirrors mine Opal. Nearly your age, married almost as long, father was POW in Japan, ….. life is never a guarantee, we should be grateful we are still here with all our memories and not worry about the future.
Keep the mind busy on positive things, it’s stress that is the killer. AF is debilitating but so are many illnesses, Make every day worthwhile.
Hello, I've had AF since I was 18,now coming up to 65. From an early age I started playing football and lots of other sports, my first sign of AF was when playing football, at the time people did think I was having a heart attack. Anyway after having what seemed like hundreds of test thay came up with AF..
I carried on playing football, run quite a few marathons, I loved running..
and all this time I was working as a plumber. Approximately 4 years ago I went in to permanent AF,, since then I have had to stop running. October 2023 I had to stop working as my breathing, due to AF &COPD did not allow me to carry on, oh! in all this time I got arthritis in both knees and on the 25 June 2024 will have a replacement in the right one.
Anyway sorry about going on "
All I really can say to anyone with this condition and other, is KEEP GOING.. All the best...
A good story. I should think your breathing wouldn’t have been helped by the soldering fumes, and those knees from squeezing under sinks trying to get the wrench on the tap nut!
I was recently diagnosed with AF, i knew something was wrong with me since my first fall in 2020, and have lived with it undiagnosed for 4 years. During those 4 years I went through the worst times, losing my Mom, losing my best friend and recently my beloved husband aged 64, so as I reflect living with AF is not something I am going to let get me down, I feel I have been through so much and all of it was out of my control so I am going to take the medication and hope for the best.
We had a similar horrific period in our lives way back in the early 2000s, one after another, and then worse a few years later. Some sail through, some battle through. It can be tough.
I send you warm and understanding thoughts.
Here’s a poem that gave me strength through those years, an excerpt from Ulysses by Tennyson:
“Come, my friends.
’Tis not too late to seek a newer world.
Push off, and sitting well in order smite
The sounding furrows; for my purpose holds
To sail beyond the sunset, and the baths
Of all the western stars, until I die.
It may be that the gulfs will wash us down;
It may be that we shall touch the Happy Isles,
And see the great Achilles, whom we knew.
Though much is taken, much abides; and though
We are not now that strength which in old days
Moved earth and heaven, that which we are, we are—
Thats the spirit Saffron, I too lost my parents, Father in a road traffic accident, he was a pedestrian and one car hit him and knocked him down and two, one from each direction ran over him, my Mother died 9 months later from breast cancer, the grief was unbearable, they were both in their sixties but you get over it, you have no other choice, memories are their legacy and of course their unquestionable love and, for my 80th birthday, eldest son bought me a Frameo and he loaded it with all of our family photos and there daily I see all of those who have gone and all I still have, its a wonderful aid memoire and takes me back to all the good times in my life and I can again relive those precious memories. I have come to realise that as we get older we lose more of our friends and loved ones and are ourselves fortunate to still be here whatever our trials and tribulations. Sending love and huggggs and very best wishes x
Interesting question. First of all respect to you for continuing tutoring that's great. I think strong or weak are possibly the wrong words, as when you have it kick in you really have a severe situation to deal with and ignoring it - "being strong" - could be classed as stupid! I think knowledge of your illness is the important thing, so you can control unnecessary fear perhaps.So "understanding" replaces *strong". But that takes time. To know when it's time to take action or control it by yourself, eg resting, or calling 111.
Wise words, Mike. Thanks you. I try to make sure I know what is "going on" as much as possible within our impoverished and at times very dysfunctional health system. The problem at times, to which you allude, is teasing apart the physical from the psychological when in the grip of anxiety.
I've always felt 'weak' when people have told me to stop worrying and just get on with it. Easy to say if it's not you that has a problem isn't it? After panicking for months when I was first diagnosed I've learned to stop stressing and live with Af, but I think having an overactive imagination has a lot to do with the amount of stress an individual suffers. It's the stress that exacerbates the difficulties of any medical problem in the end, isn't it? Thanks for an interesting discussion.
And thanks for you input, as a fellow sufferer from anxiety. Yes, teasing apart the real form the imagined is hard going. There is a certain sort of Englishness that is typified by the stiff upper lip, but, having studied the past, I am not so sure it led us anywhere useful, indeed, it led to many dark places and put many under great suffering and strain. And yet, balance is all.
I wouldn't say I'm weak or strong. I have permanent afib and in the main I just ignore it and get on with life. I stop for a few seconds when walking up hills but right or wrong I usually just carry on and push through it on the premise that if I can still walk and talk I should be okay.
I think mine is heading the same way this past few weeks. It's a mixture of palpitations and AF very easily exacerbated by exercise or whatever. My doctor says it's essentially all the same as AF, and indeed, the atrial flutter it all started with five years ago - arising from the poor state of the wiring in the upper chambers. I fear its effect on the important bottom part and valves, if I am honest.
The word that sums me up is 'acceptance '. Had debilitating woman's prob for 23 years which I accepted and then got on with it, found out all I could to help myself.The AF I have not accepted yet and its not helped by hubby who says if you can climb those 2 flights of stairs without getting breathless your heart ok.
And thank you for your post, too, Linley. My wife isn't quite that harsh but she struggles to keep in mind how I might be feeling. I cannot complain in that directions at all, though, with fifty years of being married on the horizon, I have plenty to be grateful for.
Thank you, Lin. I would go back to 1975 at a blink if I had a magic wand and I would live the same life again, minus the few tragedies - which that magic wand would deal with, too, of course.
My husband is very fond of saying that he wishes it was him & not me that has AF because he would cope better 😬 easy for him to say having not experienced it
And I often say to my wife that, goodness me, I am glad it is me and not you. I couldn't cope with Wendy being poorly (although she suffers badly with disc troubles).
The thing is Steve that I don't believe he's saying it in a kind way like you are. Unfortunately I don't find him very supportive.He's not the most intelligent man so doesn't really understand the condition 😕
Bad luck in that. People are so complex, though. I never know whether to blame that "stiff upper lip" that Bob reminded us of or simply a lack of insight and sensitivity, even, intelligence. There's so much of that around and, if Facebook is anything to go by, vastly more than I ever imagined.
Actually, my wife has less empathy than I would wish, although it might be her natural shyness. It is such a difficult condition to understand and as Bob often says, a "mongrel" one. I think AF in and of itself is likely bearable, but for those who suffer a fast rate with heavy palpitations, it is deeply unpleasant.
...
"So many gods, so many creeds,
So many paths that wind and wind,
While just the art of being kind Is all the sad world needs.'"
Yes indeed. I wish it were a local group where proper names could be used (which is why I always sign off with mine). Perhaps not everyone suffers the loneliness, but I am 100% with you there.
Coping with something like this is s&&t and the last thing you need is someone making you feel you should be positive and "learn from it". I've been listening to Real Survival Stories podcast (brilliant btw) and all the amazing people, who lost friends or limbs etc all admitted to facing dark times along the way and still do.
People have to said to me "oooh you haved coped so well" and I sometimes say "you didn't see me last Tuesday" or whatever.
Few are as open as you have been! Thank you for that. I shall seek out that podcast. I have just read in a post from someone concerning loss that you do get over it in time. Time is the great healer, of course, but the process doesn't follow anyone's schedule and, although it's good for those who do, it depends on so many things. For some, the wounds remain forever ready to be re-opened by the slightest word, song or sight and memories can remain too sad to be allowed.
I’ve always enjoyed reading your posts - and this post is evidence of why.
I’m strong in the face of adversity. It doesn’t matter what the adversity is and I have no idea why I am this way. I confess to not understanding the anxiety some feel, and often feeling very frustrated by it.
My ectopics and arrhythmias are, as you know, similar to yours. I had the knowledge in the back of mind that the broader picture of my condition has meant that the oldest living person I ever knew with it was only 67. My uncle. My mum came close at 65. I’ve lived with what we’ve called the “Morgan heart” my entire life (mum had her first cardiac arrest when I was 5). It was a shock when I was diagnosed. I developed symptoms late and had incorrectly assumed I had averted heart issues by being ‘healthy’. Maybe that’s why I accept it without fear - because I’m ‘accustomed’ to the thought? Maybe. Possibly. I don’t know.
In having said all of the above - I face most things with enthusiasm, curiosity and a huge amount of confidence everything will be ok. It’s something inbuilt within me. I’m very pragmatic. I don’t know why. I trust my doctors when they say ‘Your arrhythmias are not immediately life threatening’. They’re the experts. I trust them. I trust the medical profession. I don’t sit back and do nothing - I’m an active participant in my care and my health but ultimately understand they are the experts.
There are so many things in life to feel good about. My family, my holidays, my work, my pets. Nature. Shopping. Friends. Adventures. Memories. The ocean. Whales. The sun. So, so many things. There is only what is. Worrying or fearing the future won’t stop it. I’d prefer to make sure I enjoy it.
I don’t think of weak or strong. I think of positive or negative. Negativity frustrates me and I don’t understand it. It’s often been said I’m on the spectrum. My world is filled with logic and black and white. I don’t fear much. I don’t think that is good or bad. It just is and to be truthful, I’m thankful for it. It must be awful feeling sad, unhappy or fearful all the time.
No one is weak or strong in my view - but I do strongly suspect that some are caught up in the modern era of “self”. Some post here because they think attention is helpful - some feed their anxiety by posting and getting the attention - it’s like people who cut themselves. It’s self gratifying. I don’t understand this. We’ve also moved into an era where attention is an incredibly strong desire and it’s the way personalities are now shaped but that’s for a whole other discussion!
Anyway, I’m not sure if anything above makes sense. But it does to me.
Hi Ennasti. Oh yes, as ever, your words made a lot of sense. I can - as you know - relate well to your world view and share a lot of it. I could do with an easier going sense of humour, and a love of football would have helped me with chatting in the pub as few were keen on the books I read or the music I listened to!
Very interesting post Steve. It has made me think how the words weak and strong form a judgement. Wouldn’t the world be a boring place if we were all the same? We are all unique and all possess different gifts and attributes. There is a saying “What doesn’t kill you, makes you stronger.” I believe, when we go through a dark time, that we learn from it, as we do our mistakes. Good and bad things that happen in our lives can influence our mental or physical constitution. Our genetic makeup is beyond pur control. I have found, through life, that we all have weaknesses. We are all strong in one thing and weak in another. Isn’t that what makes the human race tick?
Ys, indeed, Rubie. I remember my two sons, one would cry when his brother was hurt and come running to tell us; his brother would just carry on playing.... Yes, we are born different, for sure.
There is, though, a deal of judgmentalism around still. The "weak" and "strong" metaphors are ones we need to be educated out of using at school, I feel, as they underpin a lot of the judgments that have made society a poor place for some. I'd say they are at the heart of awhat is sometimes called "toxic" masculinity. The British bulldog has its place, for sure, but it needs to be tamed and muzzled at times!
I admire you Steve for laying a hall carpet with your heart in arrhythmia. I think that is real courage and, indeed, puts me to shame. I would have just curled up in a ball. You know, l think there comes a point, as we age, that it doesn’t really matter anymore what, or how, we are. We lose our inhibitions and try to make the most of what time we have left. Another old saying, “ l am too long in the tooth for that.” Hope your MRI goes well, with good results. Take care.
First you are a man and society expects men to have little emotion in pain and suffering hurt.
My Brit hubby never went to Dr. He was recalled after a BP test in the mobile van. This sent him to Dr where he had a blood test which showed the early stage of Leukaemia with about 19 years to live.
He always had migraines about once a month from aged 12 after 2 childhood illnesses.
He refused to even join the family in a bid to check worms. Lined up he waited for the medicine on the spoon. He poured it down the sink. This was before the leukaemia diagnosis.
Women look after themselves better.
Unless one is a Clamptimaniac.
Putting up with flutters and palpations unless the specialist says it will not do damage to your heart, is your call.
After not calling 111 via my St Johns alarm, I remained in rapid h/rate for 2 years 3 months, but 9 months under a hospital h/specialist who was hopeless even after changing me from Metropolol to Bisoprolol.
I followed a new Locum Dr and was referred to a private special who introduced me to CCB Diltiazem. I've been on a regime of
CCB Diltiazem 120mg AM for control H/Rate Day
BB Bisoprolol 2.5mg PM for control BP.
I have always had low H/Rate PM 47avg bpm. It didn't alter but Metoprolol gave me pauses at night.
I say you should control H.Rate and BP as the first step.
Medical symptoms shold be checked and assessed by Dr but at the conversation it is your right to make decisions on the results. It may be that you need to lose weight to make you more comfortable.
There is no place for weak or strong as far as individual intervention or not is concerned and that is what you are asking.
In my journey since my stroke, AF and Thyroid Cancer has created the advocate in me.
You have struggled against a very great deal, Joy, regarding your health, and now I read, with your husband's, too. You have the beauty of living in a most amazing country and I hope that has been a source of strength. I adore nature and the Lord of the Rings' films from a decade ago showed me the unsurpassed beauty and variety of New Zealand. It's a country, as you know, that I would happily have emigrated to!
Yes I am world travelled and love living in my little area of Doubtless Bay.
How I got thyroid cancer only God knows. I have been here 34 years. I questioned the power lines across the road,I questioned the Chiropractice's Xray machine - is it checked. No one did the check.
I had to open my mouth in having the xray. Unusual? I thought it was. Not clear images and I had an MRI and xray after.
The video offered to us by x... called Arrthymias and Death is worth watching it. Very true and reason why I don't take statins. We need cholesterol. This video tells us why.
X-rays are why MRI scanners need to become more widespread and developed. I’ll look at it but I think we’re not short of cholesterol. I was reading a study tonight called The Tyranny of Betablockers. If you search for that, you’ll relate to much of it.
I have had health problems of various sorts throughout my adult life and sadly many of them have been iatrogenic. Missed diagnoses , wrong diagnoses and most of all reactions to treatments - mostly overuse of antibiotics and inappropriate antibiotics. I am now 72 and have suffered from skeletal pain for half my life. But I have had two major passions - Bharatanatyam and gardening- which have given me much joy and satisfaction (despite often exacerbating the skeletal pain! ). I had to give up dancing when I was 60 and stopped teaching a couple of years later ,but my garden is still my pride and joy and despite crushed discs I am able to work between 2-3hours a day (when it's dry). I also love reading and have done ever since I learned to read ,so now I have to spend more time resting I am never bored. I am incredibly lucky in having a wonderful husband who has always supported me . When I first started with afib attacks he used to be more stressed than I was but now he has got used to it as have I. I do worry a bit about my afib becoming permanaent and also about whether to go for an ablation ( would it make it worse?). I do not consider myself to be strong but I refuse to let health adversity stop me doing the things I want to do . I have to admit that I sometimes use it as an excuse to not do things I don't want to do!
You must have had some fascinating times with that Indian dance hobby. I have seen it once or twice at friends' weddings and the like, as well as on several films. It is a stunning form of dance, quite stunning.
As for being "bored", I share your lack of that. In fact, the word isn;t really a part of my vocabulary nor my wife and son's. It irritates me when my otherwise lovely daughter-in-law uses it in front of our grandson! I also have a love of reading, although tiredness form insomnia makes reading novels before bed, which was my favoured time throughout life, much more difficult these days. I am currently reading Amis's "Time's Arrow", though, and it is something of a "page-turner" and easy going (so far). I just finished Swift's "Waterworld" which surprised me that it didn't stir my emotions as much as his short stories do.
Hello - This has nothing to do with Afib, so I hope it's allowed! I read that you tutor English at 'O' and 'A' level. I belong to on online site for the alumni of my old grammar school. It spans the years 1950-1970. Out of interest and for fun, I asked if fellow members could recall which Shakespeare Plays they did for 'O' and 'A'. Out of the 38, possibly 39 or more plays he wrote, the same ones kept recurring. Macbeth, The Tempest, Twelfth Night, Othello, Henry 11 Part 1. Hamlet. I wonder if it still pertains today, I am curious to know?
I had to struggle through Julius Caesar at school, myself. That was no fun when I was twelve. Before I retired, I tended to teach Macbeth or Romeo and Juliet for GCSE, although some teachers choose Much Ado about Nothing or A Midsummer Night's Dream, even Merchant of Venice or The Tempest, on occasions. For A level, Othello is far and away the country's favourite, although not really my own (mind you, Desdemona is a truly marvellous character, as are the other females in the play), followed by King Lear with a few choosing The Winter's Tale or Twelfth Night.
I wish it weren't taught for GCSE for exam, and had been left as a coursework option as Shakespeare is not really suited to that young age. He wrote for a mature audience, after all, and surely never dreamed that anyone would sit at home reading his pays, rather than watching them. Plays are for the stage, not the page, after all.
Here is my favourite few lines from the Bard, although it is hard to call any such a thing since it is a treasure trove of moving verse. These are from Macbeth, as you will likely know, and spoken by the tragic Macbeth on hearing of his dear wife's death:
Oh yes, that soliloquy is etched on my brain. We were taken to the Old Vic to see Macbeth, Michael Hordern played the leading part, and his performance was panned by the critics! I am not actually a great Shakespeare lover, I prefer his sonnets over his plays - I much prefer poetry and could listen to videos of Cillian Murphy reciting W.B Yeats and Richard Burton with Dylan Thomas, all day - marvellous calming treatment for A fib. ! Thank for your input on my unrelated question and thank you to the admin. for allowing it .
That version was filmed for the BBC and is still available and, as it is so close to the original, still one I use.
I bet you remember the following, too. What a marvellous speech this is! Shakespeare gave some of his best lines to his female characters allowing them to be a match to the men every time:
...
"Come, you spirits
That tend on mortal thoughts, unsex me here;
And fill me, from the crown to the toe, top-full
Of direst cruelty! make thick my blood,
Stop up the access and passage to remorse,
That no compunctious visitings of nature
Shake my fell purpose, nor keep peace between
The effect and it! Come to my woman's breasts,
And take my milk for gall, your murdering ministers,
Wherever in your sightless substances
You wait on nature's mischief! Come, thick night,
And pall thee in the dunnest smoke of hell
That my keen knife see not the wound it makes
Nor heaven peep through the blanket of the dark
To cry, "Hold, hold!""
...
The final four lines are simply splendid, "Come thick night..."!
Yes, Lady M's first major soliloquy in Act 1! I remember even then the table in the centre of the stage was covered in 'blood' after so many performances, presumably for school children about to write exams! Much of Macbeth including 'Is this a dagger that I see before me'., and the first line of the translation of Latin to English of Caesar's De Bello Gallico, will be etched on my brain forever!!
Some do say that but, for me, I think there are other readings than that of nihilism (and what a fine word that my elderly friend always corrects my pronunciation of, reminding me that I did once study Latin!). I think Shakespeare was somewhat ahead of his time and the play has more than a hint of the deep humanism that was at the heart of the Renaissance, exemplified by the way that Macbeth places responsibility on uncontrollable external supernatural forces (i.e. a Mediaevalist worldview) rather than on his own, entirely controllable, perverted desires and decisions. And yet it is all-too-easy to forget that they are in the depths of the most awful grief having just lost their only child (Lady Macbeth: "I have given suck, and know. How tender 'tis to love the babe that milks me").
59 -60 we "did" The Merchant of Venice for 'O' level. We were fortunate as only a short distance from Stratford and in the sixth-form used to hitch hike there (about 20 miles) to queue for standing tickets. We stalked various actors on whom we had crushes before they became household names, Robert Hardy, Ian Holm, Julian Glover to name a few. I was heart broken when I realised I had not recognised Robert Hardy playing second centurion on one occasion!
He was a marvellous actor. We have lost so much in the quality of acting, and film making, I feel. The lighting (and sound quality) of many modern films doesn't begin to compare with some of he older ones. Mind you, we're just watching the Merchant Ivory version of Forster's marvellous "A Room with a View" and they captured the story and its cutting critique of English high society to perfection. It's very moving.
I think different boards had different syllabi - we came under University of London and 'Macbeth' was our June '59 'O' level play. The only film we watched was ' Great Expectations' with John Mills - we got herded off to Reading University for Moliere's ' Malade Imaginaire' !. Loved Robert Hardy in the TV series "All Creatures Great and Small' a wonderful Siegfried! You were so fortunate.
Yes although definitely in the Midlands we did Northern Board. Fancy me remembering that!! You're right we were lucky, though 2 of our number were taken to a police station and parents contacted, as they "hitched" in the early morning and when asked their busines replied "we're going to see Two gentlemen of Verona"
We did Romeo and Juliet for O level Eng Lit in1968 along with Trollope's Barchester Towers and WWI poets. I hated the Trollope , thought it was super boring but in my 20s I read most of his works and thoroughly enjoyed them!
I can recall disliking much of Tennyson and Wordsworth only to find myself doing a complete about change as I grew older.
I think I’ve read Trollope but I’m going to have a look at the bookshelf. He’s highly regarded.
I think R&J is a rather underrated play (by some aficionados). Shakespeare themes of “toxic” masculinity and true love touch me deeply. We began watching Forster’s A Room with a View last night on TV. Now there is a writer of the first calibre.
I was rather like that with most of the Victorian writers, but you do grow into them and realise that regrettably, there are very few writers today that can use the English language as they did ,
You are right and it’s such a shame. Now that the use of the present tense narrative voice has swept through so many of them, it’s even worse (although Mantell and Swift are exceptions, perhaps).
My journey into the classics began in my teens with Graham Greene and I’ve ever since liked that mid 20C rather “educated”, I suppose rather “posh”, voice. I then went the way of sci-fi and fantasy with Ray Bradbury and the wonderful John Wyndham - and even was gripped by the satanic novels of Dennis Wheatley. I then found Hardy and became forever hooked on the late 19C and most especially with the marvellous George Eliot. Some of Dickens is beyond compare with his uniquely warm hearted voice but I recently rather waded through much of Hard Times so even he had his bad moments although it had glimpses of his genius.
We are blessed by such writers. Their skills surpass all understanding! And their memories must have been huge. Hardy was known for his so called “eidetic” memory, apparently.
I also love Hardy's poetry -I particularly love 'Drummer Hodge' - as living in South Africa, I can visualise it so well! Speaking of South Africa, and I say this without any bias, as I am English born and educated , for me. one of the writers who used the English language so well in the last 50 years, is J.M.Coetzee, and he's Afrikaans! but I can read his novels 'Disgrace' and' Youth', just for his natural and to me, perfect use of my mother tongue.
My son has both of those on his bookshelf and we're just about to see him for Father's Day meal. I shall read one of them and let you know. Thanks for the recommendation.
Yes, indeed, Drummer Hodge is a fine and deeply poignant little poem from that great writer. His Christmas poem, The Oxen is also wonderful and is one that speaks to my heart directly. These are the lines I like most from him - from the love poems he wrote after his wife's death...
.
The Voice
Woman much missed, how you call to me, call to me,
Saying that now you are not as you were
When you had changed from the one who was all to me,
But as at first, when our day was fair.
.
Can it be you that I hear? Let me view you, then,
Standing as when I drew near to the town
Where you would wait for me: yes, as I knew you then,
I have suffered from tinnitus for over 20 years. Some people who have the same problem claim that the continuous whistling and chirping in their ears drive them crazy. Well, I’m still not crazier than I was before! I have just learnt to ignore the noise and live with it. I don’t even know it’s there until I think about it, like now.
I have experienced the same thing with AF. Not so long ago, I had daily breakthroughs lasting several hours, and being very symptomatic, I really got worried that it would become permanent. After a few weeks I started getting less symptomatic and getting used to the sensation . In the end I did not feel a difference between sinus rhythm and AF.
I then stopped taking my rhythm medication (Flecainide) as it was clearly not doing its job any longer, and just controlled the rate with Bisoprolol. And anti-coagulation of course. I started taking 15 grams of D-Ribose daily, together with L-Carnitine and Ubuiqinol. To my surprise, the episodes stopped almost immediately and completely and have stayed away ever since. Anxiety is the best partner of AF. Or perhaps the D-Ribose did its magic?
The condition is not deadly and does not influence life expectancy, provided rate and coagulation are under control. So if it should come back, I’ll treat it the same way as my tinnitus: ignore it.
By the way, although 4 consecutive cardiologists have insisted on ablation, I would not even dream of it. Too invasive, too risky and not efficient enough. But that’s just my opinion - and that of my best friend, a retired cardiologist who has AF himself.
Hi Pommerania. Besides taking. D-Ribose, Ubiquinol and L-Carnitine I started taking a daily dose of 50 mg Sertraline, as I’m sure that my AF is stress-related and vagally triggered. I doubt that the Sertraline would be the main solution, as it normally only starts to have an effect after 4 to 5 weeks, whereas my AF stopped immediately after I made these changes. There’s also a possibility that stopping the Flecainide solved the problem!
No, it’s a sugar-based molecule, often used by athletes to gain strength. It is marketed as a health supplement, mostly. It seems to have a strengthening effect on heart nerves as well.
I enjoyed reading your post, and the different perspectives you give. I think, with tinnitus, it very much depends upon the quality and volume of the inner sounds. I have had it for as long as you and generally ignore it, my father and grandmother had the same. Mine is a ringing, my dad's was a "whooshing" like a train going through a tunnel. I met a chap once on holiday in Wales, a young family man and, as it turned out, one of the UK's leading physicists. His tinnitus was of a different order and often incapacitated him, bringing him close to the edge more than once. I felt deeply sorry for him. Like "AF" the word "tinnitus" is a condition that has such a wide spectrum of effects that the name is, in and of itself, not too meaningful.
I've never had success with supplements and the like but I have never heard of those you mention for AF (and I can't use SSRIs at all as they cause terrific side effect problems). How long have you been AF free with them?
I agree. There are certainly many stages in tinnitus, as well as in AF, or any other disease for that matter. Mine is a high pitched chirping sound, sometimes accompanied by a single high frequency tone.
I’ve been in sinus for 2 weeks, after 3 months of daily episodes.
I was thinking the same. But apparently it can still change for the better quite drastically. A niece of mine had weekly and daily episodes for years, and all of a sudden she has been in sinus for over 6 months now! Without rhythm meds! It all depends which kind of AF it is: vagally influenced AF is very unlikely to become persistent, it seems. So don’t worry.
Mine feels vagal in many ways. So - I hold out hope. Mine has gone away over the last few years for so long that, at times, I have felt something of a fraud on this forum.
Great thread Steve and really interesting - Here’s something to add into the mix - I am someone who is the ultimate adapter - I’m lucky that anxiety isn’t something I have to struggle with - I am however now very aware though that this adaptability trait also has a real downside and am aware that due to it I actually did not realise how bloody awful my health had become as I adapted to it instead of JUMPING up to tackle it earlier than I did. I’m not afraid to die - I absolutely don’t want to, have 4 kids who I’ve brought up on my own , who I absolutely Love and who still need me around and I want to see how their lives pan out, for some time yet and absolutely want to be in a state of health that allows me to enjoy the rest of the life I have. I think the Key here is getting a good balance between being “strong” and being “weak” (neither terms I think are correct with regards to the typical behaviour we associate to each of them and both actually have pros and cons to our health)
A very insightful “column” Steve! I too am not sure where I fall on the “spectrum”. Sun, CHF, and recovering from a broken leg are the current maladies. At times I fell “wobbly”, both literally (leg) and figuratively, but I manage quite well and independently. My friends marvel, and some in similar situations don’t do nearly as well. I attribute my relative well being to strong faith and an attitude that no one lives forever, which I fell allows me to live each day as it is presented.
I used to have a strong faith but life events brought it to wither on the vine. The best wine though comes from withered vine grapes, they say! Faith is surely a comfort but I suspect, rather, that having a mind that can hold onto faith is what you have and it is that which allows you to live each day in peace, and that is a good thing.
Here is one of, for me, the most inspirational passages from the Holy Bible:
For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.
Let not your heart be troubled: ye believe in God, believe also in me. In my Father's house are many mansions: if it were not so, I would have told you. I go to prepare a place for you. And if I go and prepare a place for you, I will come again, and receive you unto myself; that where I am, there ye may be also. And whither I go ye know, and the way ye know.
there is no such thing as strong or weak, we are all individuals and deal with afib in our own way. It’s not good to force your body to keep going when one part says ‘ give me time to pause,’ nor is it good to let an attack make you feel everything is impossible. It’s all about a positivity, keeping negative feelings about the afib, or any other life long illness, in its place so whether it’s permanent or paroxysmal you can still get the best out of life without the doom and gloom that can so easily creep into out thoughts. Put the afib back in its box, it’s there but isn’t going to control our lives.
Thank you Steve ... your students are fortunate indeed if you set them such interesting questions!
I feel that the way we cope with, adapt to, or overcome the difficulties of living with AF will depend on how it impacts our essential purpose or the philosophical contextual meaning of our lives, not least how we see ourselves living that life. Added to that is the 'outer' context of medical science and general social perceptions about AF.
It was interesting to hear this from Frazer B:
I finally had my first appointment with the cardiologist. I told him that I am usually a calm and quiet person, but when I experience a high rate of flutter, it feels like my brain does a complete turnaround. His reply was, "Yes, you are not alone. That is a common mental presentation with a high rate of flutter/afib." He then mentioned that it can often be mistaken for anxiety. Thank goodness he said that ...
For the first 8 months of unexplained intermittent 'palpitations', my GP insisted I was suffering from 'anxiety'. What a paradox! Looking back, I suppose my strength was to listen to my body and calmly insist on a private cardiologist referral - who very quickly diagnosed AF.
Rationally I know it won't kill me, but it's still frightening when it happens.
I realise that for some of you it doesn't stop, and yet you somehow cope, I'm in awe of that.
Thanks for such an insightful post. I find that if I know something, I can put up with, or even conquer, it. It is the unknown that I fear. I wouldn't think anyone would call me a "control freak" but, in some senses, I suppose I am. My cardiologist told me much the same about "anxiety", that my diagnosis (and once a failed and truly dreadful experience with SSRI drugs trying to treat it...) was likely completely wrong, and that I had had brief episodes of atrial flutter intermittently during my life. That certainly makes a lot of sense when I consider where the "anxiety" first started, and how it randomly appeared. I can even recall an incident in my childhood of falling from goalposts onto my back and being so badly winded that I couldn't breathe for a long time, frightening everyone around. The palpitations and what seemed like "stitch" started from that point.
Interesting thread Steve. And some fascinating insights from forum members. My experience is similar to that of one of the earlier responses- I'm normally organised and controlled and cognitive function tells me AF will not kill me and - for the moment- will not last long. BUT that part of my brain switches off when AF comes on. It's like a hot wire to the flight and freeze system - with every cell in my heart shouting 'alert, alert, alert'. I then have to talk myself down, check my rate, breathe and repeat. And - as we all know - however much we may hunt for triggers- AF is unpredictable.
So we live with that daily. It is not easy. I try to focus on all the enjoyable days when I don’t have AF. Fortunately there are many more of these AF free days.
I think I'm doing OK mostly but it does make one lose confidence - all those 'what ifs' that run through your mind when thinking about doing something demanding like speaking at a conference, travelling abroad alone etc. All things I used to do without blinking.
Fortunately I work a lot with my husband and he has been amazing throughout my 4.5 year AF journey. He's rarely phased, although I suspect underneath he worries about my longterm health.
Oh yes, he surely worries. The warmth in your writing suggests a warmth in that relationship that would ensure he would be worried. I am lucky to have a similar relationship.
On the whole, I'm a put the big girl pants on and crack on kinda gal and it's others who tell me how strong I must be and its marvellous how I cope. But, there are some occasions when I've just curled up on a corner, sobbing into my knees over my heart/health issues. Like Singwell, I have a hubby who puts on the brave face and thinks he needs to be strong for me but I've seen the panic in his eyes when I've been lay on a hospital bed. Maybe that's another reason why I just try to carry on regardless.
Not sure if that puts me in a strong or in denial camp 😁.
I relate to the hubster situation Ducky. They keep it inside don’t they? We had to have a long chat the other day about underlying fear of dying and how you can let it affect your life and way you interact in relationships. Turned out he was more afraid of me dying than I am. It was all pretty deep. But it's really helped.
Hubby is very reluctant to talk about the possibility of anything happening to me. I think it's because he's worried about who will cook his dinner but it may be love 😁.
I think sometimes people forget to spare a thought for the other halves, when they give all the attention to the afflicted. A few of my friends ask how Lee is coping but lots don't.
Strength isn't part of it - just you and your type of genes and upbringing, I'd think! But well done and I'd say there was more than panic in his eyes, there was love. ☺️
lol, perky!! When I was working and often having to get up extra early to face a room full of adult students for daylong workshops, I’d look in the mirror, give myself the fakest perky grin and yell “perky, perky, perky” at myself. Always made me laugh and it worked. 😂 Still do that on occasion when I’m feeling done in.
So much like you Ducky! I generally just keep going, though there are some things I just don’t do anymore and that frustrates me. Most particularly, driving, since my tachycardia is often triggered by stress, can’t risk that behind the wheel. I used to think nothing of getting on a flight, picking up a rental car and going to visit friends or go to a conference. Now the stress of airports and/or driving almost inevitably brings on tachycardia. And like you, my husband is the one who worries more than me. Which I understand, if the roles were reversed, I’d worry too. For them, not having afib/tachy and knowing what it feels like, is scary. They likely just can’t truly fathom that no matter how scary it looks from the outside, it truly isn’t going to kill us, no matter how many times we tell them.
I have spent the better part of my intermissions at work reading through these posts. What an amazing discussion! My husband and I were having some of these same discussions last night. I have always been very resilient, but also quick to stress and prone to anxiety. I guess I have an anxious nature, but also recover quickly and persevere through hardship. I typically get down for a day or two, then get back up, dust myself off, and keep on trucking.
The rhythm issue has been different for me, though. I feel like over time it has whittled away at my resolve. Chipped and eroded my endurance and steadfastness. The longer it goes on, the more exhausted I become. The more exhausted I become, the more anxious and defeated I become. I trudge on. But I haven't yet found acceptance. Once I do, I have no doubt that I will get up and keep trucking. But that is harder to do in the face of exhaustion, anxiety, and constantly changing targets.
I have always been described as being really resilient. I am not, however, particularly optimistic and cheerful as a disposition, and when stressed, I probably tend to be too reactionary and emotional. Does this make one weak, or strong? No, it isn't that simple. I think for me, my 'weakness' lies in the dark moments, the alone and quiet places, where I worry and let the emotions happen. When I feel afraid. The 'strength' is when I get up every morning and carry on. I go to work. I homeschool the kids. I take care of my dad. I garden. I cook, clean, and do all the things that need to be done on a small farm. I try to carry on and not complain. But I am not thriving.
I'm not really answering the question. For me , I have to constantly fight the mentality that comes with childhood trauma, that fight or flight response. But because of that same trauma, I have the intrinsic ability to endure. So this is my weakness and my strength. My hope for us all is that we find a way to do more than endure, but to accept, stand up, and thrive again, even if it is not in the way we would want or choose.
We were coming home the other day from a really long day. My husband just received bad news about having macular degeneration. We were tired and wanted to go home. We ended up driving through a terrible storm and witnessed two tornados, severe hail, flash flooding, downed power lines, and our car being blown across the road. When we finally made our way towards home, my father in law called to tell us the story of Jesus being in the boat with his disciples, and calming the wind and the storms. As he told us this story, classical music randomly began playing on the radio, and the sun came out. It was surreal. For me, the message was this.... He does calm the storms and the sun will shine again. No storm is too big for me to weather with the right tools.
What a fine post, Megan. I love looking at the sky and cumulus storm clouds developing out of a blue sky are simply awe inspiring. We had the same here yesterday - what a storm. Of course, your storms dwarf those we get, but one thunder crack was as loud as any I had ever heard.
On that "strong/weak" idea, the more I think about it, the more convinced I am that we'd all as a society, be much better off without the thinking that brings about its use.
I often wonder to what degree it has bedevilled our thinking over history, likely underpinning many worrying hegemonies and ideologies that still haunt society. It surely plays its part in reinforcing other binaries and social divisions such as heroism / cowardice and masculinity / femininity.
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Change proposed to medication for epilepsy
Lowering Bisoprolol dsge and exercise
First appointment with arrhythmia service. 
AFib or other arrhythmia?? 
Coping with AF
