I came across this recently and thought how appropriate it was. How many of us try to explain how we feel to our friends and family and even our GPs - and notice the patient and sometimes patronising reaction we receive as we talk of our tiredness, fatigue, lack of energy both mental and physical and our anxieties. I don't think we are always taken seriously. We don't want to go around worrying about ourselves and nor do we - but just want to be understood.
If You Were Me.....: I came across this... - Atrial Fibrillati...
If You Were Me.....
Written by
Dadog
To view profiles and participate in discussions please or .
50 Replies
•
BobDVolunteer
I totally agree Dadog. I really want to invent a vest to strap people into that gives them the idea of what AF feels like.
Bob
It drives me to distraction when people, especially medics, describe AF as "palpitations." It makes it seem that we are making a fuss about nothing. I'm constantly having to say that I don't get palpitations but I do have AF.e
I'm a bit late in reading your comment jennydog, but you just made my day! Wouldn't we feel so much better if it actually were JUST palpitations! Even Professors have dismissed my symptoms under the same guise. I liken my AF episodes to being shaken by a rabid dog, followed by a feeling I have just come back from drowning. Impossible to get across when your face gives nothing away other than embarrassment!
What a lovely response!
I keep coming across people who say they have irregular heart beats and they've never heard of AF. If I have to have a blood test at our GPs the form always states "palpitations." the worst and recent was a visit to the EP in Liverpool. The nurse who did a very efficient ECG greeted me with " So you're having palpitations, are you?" I really am on the verge of turning nasty about all this. It is a ghastly affliction - I can hardly function some days - and there's nothing else wrong with me! Best wishes.
So true. When I'm feeling unwell with AF and I'm asked how I feel I just want to say, ' ill'. Dr/nurse answers back, 'In what way ill'. It's so difficult to describe. No I don't feel sick, nor dizzy I just feel ill!! Dr or nurse starts to lose interest.
Completely agree
Could not find till now a good words to explain my suffering
Is it dizzy , chest tightness,short breath, chest heaviness, irregular beats , balpitations, chest pain, numbness, hard to swallow,.........
It is all together at one time ! Even though it is not the right situation , in additional to anxious and mentally stress
God with us , sometimes I want to say that I'm ok rather than start endless complain 
In addition to those I noticed a lot of AF patients who don't have all those suffering and symptoms , actually my EP informed me that not all the patients having same symptoms and nobody knows why!
Sometimes I feel I like only to sleep to stop feeling all that anymore , hope it is not depression!
I'm really embarrassed from my family and friend from continuous complaining , but I'm really not ok , I already forgot how to feel normal anymore !!!!
Thanks for this post 
I think I know exactly where you are coming from, Maitha.....and to make it worse, I think your frustration is increasing your stress and anxiety. I very often reply to enquiries as to how I am, with a straightforward " I'm not too bad, thanks." It saves a lot of explaining stuff that people don't want to hear anyway. That sounds unkind as I'm sure people care about us and really want to know 'how we are' but how do we answer that without them starting to glaze over?!
It's easy to become withdrawn and inward looking in this situation, Maitha - but it's not necessarily depression. Stay positive and try hard to accept that until things change and you feel better, how you feel now is 'normal'. Work on that and work from that. You will feel better and I hope you do soon.
Thanks for your comment
I will try your advise , but usually my complaints mentioned above addressed to my doctors ,
But my family always expecting me to act as i used to be (active, full of life and laugh ) where I'm not able to do so , even by pretending .
I'm looking forward for better days soon for all of us
I totally agree Dadog, I'm sat here debating whether i should keep my GP appointment. I just dont feel right, was in hospital all last week with pleurisy, chest infection & a virus. For the second time in 3wks my meds have been changed & I'm short of breath all the time. That just cant be right, so do I think a) have a chat with gp & hope she doesn't think im wasting her time OR b) just put up with it? who knows other than this invisible disease is difficult to explain. As the paramedic said to me last week 'not much we can do for these chronic illnessess, but we'll take you in or you are only going to sit here & worry about it & call us again'! not the sort of response you expect is it.
No, porsche, that's not a good response. There is always something that can be done. It might be medicine, therapy or a kind word. You have to remain positive, even if it is very easy to slip back. Bear in mind that you are never wasting medical staff's, doctors or GP's time. That is their job . Keep at it. Stay positive. Don't listen to overworked and therefore seemingly dismissive paramedics. What do they know about us AFrs anyway?!! Get well soon.
Wonderful share... this community has provided such tremendous relief from the despair of trying not to bore people with our trials and tribulations with AF but also the pain of not being heard from those who we hoped would understand. I learned to not share... not a good solution. Hence this post should resonate for us all, and then we have to move on as usual, but knowing others understand does help!
Good attitude, iris1205! I've picked up here that it is fairly common for us, through frustration, to stop sharing - which, as you say, is not a good solution. Wasn't it Spike Milligan who had his headstone epitaph "I told you I was ill."
We can, as you point out, move on as usual and perhaps share with those who genuinely want to know and who might just understand.
Thank you so much for sharing. AF is very difficult, and unfortunately even people close to you can prefer to shut their eyes and pretend nothing is wrong, which makes it doubly frustrating. Having this forum, where you know other people understand exactly what you're going through, is a godsend.
Maitha• in reply to
You are right , nowadays I prefer to come here and complain better than others around me here , at least I know I'm not alone in this and others share me same suffering
Thanks to all of you for being good support
Thanks Daddog, totally agree. When in coronary care they kept waking me up because of my blood pressure constantly crashing and asking "how do you fell" "C..." Came the reply, "how do you think I feel!"
It is so hard to describe especially the tiredness but what really gets me are the friends who think that because you have had an ablation that you are on an even recovery curve and don't understand that you can actually feel worse before you feel better. Great post and obviously people are resonating with it.
Feeling tired is something again, on waking up each morning i'm thinking how is it going to be today, we never seem to be able to do what we would like to do, walking each day is a thing we enjoyed.
Christo
That's me too, Christo. Every night, before going up the wooden hill, I promise myself that tomorrow I will lay those tiles, prune those shrubs back or start a painting or drawing and come the morning? well....maybe tomorrow. We can make jokes about it but it can be so draining and demoralising. No reason to get depressed though...the will is there, There's always a way to work round it!
And I am different again ( of course my husband would say!). When in A.F. I am on edge and hyperactive, almost as though I'm trying to keep up with my heart rate. When on meds( flecanide ) I feel lethargic (husband prefers this to hyperactive) but if I make myself active I feel fine. It's the motivation I lack when on the meds not the ability to do things. Anyone else like me?
Not far away, Dedeottie, I'm lucky to feel almost Ok when in AF, but very annoyed by the way it intrudes without good reason into my life. I haven't noticed lethargy with flecainide. For me, the worst is the uncertainty. Too timid to drive a long distance alone, to offer someone a lift to something, to go away on my own - nervous about being at home overnight alone, unwilling to travel abroad. And resentful as it has paralysed my ability to function and eroded my sense of wellbeing. I feel so close to being normal, but I 'm not, just every now and then. It's almost not there, but in the last year I have been about 35 times to my GP surgery, 24 of them for INR checks, been to A and E, seen three consultants in hospital and had an ablation. I am hugely grateful but what has this occasional inability of my heart to keep a regular rhythm cost?
I know just how you feel. I too feel as if Im on pins waiting for the next time. However, this week I heard from a dear friend who is only early 40s been diagnosed with a rare form of cancer for which there is no successful treatment. He is totally focussed on a cure being found in time to help him and is determined to enjoy everyday. I must admit to feeling very humbled by this and am going to try to just enjoy every A.F. free moment. Maybe I will transform into a cup half full person!!
Hi Rellim, I couldn't agree more about the uncertainty of things and I am finding that it's undermining my confidence which, as my darling daughter kindly pointed out to me yesterday, has never been in short supply! I have a great cardio who said that I would probably go on to develop permanent AF and that that was a good thing because you get used to being a certain way.....and he thought that was the good news!! A sense of humour was required at that point!
All the very best to you.
Yes, Mamamarilyn, as Kernow43 says, with AFib there all the time at least you know where you are, even if it's not where you want to be. I see where your cardiologist is coming from - so easy for him to be so glib as he's seeing it all the time. Good to find something to laugh about where you can!
I never know when AF will put in an appearance and used to think if I didn't wake with it I was OK for the day but it suddenly started at 5pm about a month ago. And then you don't know when it will stop. Always has for me and within a few hours, but I went to sleep with it for the first time a couple of weeks ago. It had gone by the morning. Since my ablation last week I have been fine and my fingers are crossed.
In the last few months I have had wise advice from my children (presently in their twenties) and it has come as a bit of a shock to find that clearly the roles now have got reversed and they will tell me more and more what to do. I knew it was going that way when our eldest was 9 and helped me find the right money for the bus fare when we were abroad.
All the best!
I can't respond, dedeottie because I can't see all of your further response. Something isn't working today as the relies lengthen.
Ah, that's better. Yes, difficult as it is sometimes to see the glass half full, it is great if one can view life like that. Had to tell myself more than a few times that it is a pity to waste time being cross over a silly thing like not being able to eat cranberries or grapefruit ...
I should (and sometimes do) consider myself very fortunate as I had a diagnosis of cancer over 20 years ago and spent three weeks wondering if I would be dead by Christmas, but happily it turned out that it was not advanced and was treated successfully. I vowed to do something meaningful each day but of course soon slipped into complacency again and have quite a few days that don't move me forwards too much at all. I think it makes life feel a little sweeter though when one remembers how lucky one is to be alive, with or without AF.
We are all lucky because anyone can be swallowed up in some catastrophe at any time.
The average age at death in my family has been 51 and I'm moving it up year by year. Do wonder why I'm the one who is living so long. However, there's also the feeling that I am in a position right now to make the most of life before I get too old or infirm (or too dead) and AF threatens to hold me back if I let it. It's wonderful what technology, medication and medical skill we have today to help us and I am most grateful to all the people who are contributing to my wellbeing.
Wow. You have certainly been through the mill . it seems a bit cruel that you have been given A.F. to put up with after surviving the cancer scare. We are so lucky to have this forum to share our thoughts. I would never have expected it to help so much.x
Oh, here I don't find it hard to see the glass half full. I'm lucky to have been diagnosed early and been cured. I might have had malignant melanoma (very virulent) or ovarian cancer (not easily noticed or diagnosed until too late) or a brain tumour - all in the family, as was a fatal bout of pneumonia. I do resent AF being such a powerful influence when it's not there most of the time. Don't start me on how it's affected what I eat and drink....Yes, it is great to know one is not alone and I have picked up a lot of useful hints and info. And ranted a tiny bit, which helps.
It's so validating to hear others attest to the downsides of AF. It's so difficult for others to understand. The never ending tired, lack of energy. I avoid social interactions sometimes because I can't keep up, worrying when around people who are sick
because I know a cold or infection can mean downtime for me if I get it. Visiting my EP for my quarterly appointment and have them listen to your update but feel they really just don't get it. There are so many things that could be worse i tell myself that on the bad days. So thankful for all of you here who walk this everyday.
I think the seemingly disinterested attitude of doctors and consultants is down to a poor 'bedside manner', in most cases, KayRee8. They will be listening and mentally sifting out the things they need to know but, for goodness sake, wouldn't it help if they looked us in the eyes and nodded a few times?!! Doesn't cost anything and would help us feel better.
This morning the support nurse will be bringing one walker like a zimmer frame with wheels, and a Rollator that you can wheel and sit on if you feel unwell, as they feel I am at risk with falling due to light headedness and near faint situations due to A/F.
But alas other than my medication,and a PACEMAKER, there is no real cure for my A/F? So since 1998 I am know further advanced than I was, other than the gift of these items coming today, and of course the powers to be playing with medication dosage, hit or miss? or just plain ignorance.Regarding Ablation is it the answer?
Can't argue with that, I've had a really ropey winter this year health wise. Hardly leaving my front door. Still got some sort of virus or chest infection hanging around after a couple of months, plus the odd "catch your breath" type episode of AF to really finish it off.
Really need to see GP but not confident of being able to explain it in words that he will understand. I get sympathetic noises but invariably his eyes tend to glaze over.
Have a cardiologist appointment later this week, six month check up, but most of this problem I would assume is not really his department.
Of course I've convinced myself that it's all down to the ageing process, plus the long term meds to control the AF lowering my resistance to these infections, but trying to explain how I feel is impossible. Not so long ago would have been prescribed a good dose of antibiotics but that does not seem to happen these days.
Anyway, moan over, just meant to say that I agree with you all..... but once I start ......
All the best
Ray
I've been in "permanent" 24/7 AF for over five years now and on Warfarin, Losarten and recently replaced Bisoprolol with Adizem-XL. I'm beginning to feel quite relieved that my AF is continual as the random bouts some people experience seems to be more debilitating! I must say I tend to ignore the condition, apart from taking the meds, and just get with things as normal. This attitude is probably as a result of the GP's and Cardiologist's view that there is nothing more that can be done and that until recently I have really been symptom free. I tend to make light of it when talking to other people and joke about my heart syncopating "what else do you expect from a jazzman?" , but I know I'm not functioning properly and it is a worry if I let it. I am so pleased to have found this site where we can all share our experiences and thereby support each other, however indirectly, and probably more importantly can be honest about how we really feel to others who really understand.
Since being on Warfarin,<12 months.> I have a numbness in both big toes, as well as a number of similar symptoms to those already listed on the site. I am not sure if the condition is down to someother cause,i.e.getting older, other drugs for blood pressure,simvastatin. Would be interested in finding if anyone else has weird effects like mine !!!!
Yes, I started with numb toes, has now crept further and feels like invisible socks, or having feet wrapped in cling film, but in my case it's not warfarin but flecainide, although, come to think of it, it did get worse as soon as I started taking warfarin....
Thanks for your reply.Have you spoken to your GP about the symptoms?. Mine said it was probably down to a pinched nerve. Somehow I don't see if both toes are effected it could be a pinched nerve!!
I agree. Would surely only be in one foot. Yes, I.ve mentioned the strange sensation. It's a known side effect of flecainide. Happily my dose has just been reduced by a third.
Hello everyone
I went to hospital on 1st March, thinking my chest was about to explode, my heart was pounding so hard. Spent 5 days in. As well as the new AF, I have had a pacemaker for 30 years. They have had to modify because it was trying to make the ventricles keep up with the atria (I think). I'm a little vague on the diagnosis still. I don't understand what I've read about people going in and out of AF. I just feel awful most of the time. The only time I really notice my heart racing is in bed at night. The worst symptom for me is the chest tightness and shortness of breath. I am quite frightened that I'm going to feel like this forever. My husband and I love walking and I can barely go 50 metres now without feeling like my chest is in a vice grip.
A few years ago, I went to Thailand, high up in the mountains. Because of my pacemaker, I developed altitude sickness - I retained fluid in my whole body. When I got home, I spent most of the next two days weeing and lost 19 lbs! I had felt so awful on holiday, I didn't eat much, so ended up weighing less after the holiday than before (silver lining!). This is very similar to how I feel now, like my organs are all squished. I have gained a few pounds but it feels like more.
I don't like whinging and I hate people who run to the doctor every 5 minutes. It's not who I want to be but I worry that I'm not going when I should. I'm on Bisoprolol, Ramipril and Warfarin. Waiting to see specialist re possible ablation.
Just looking for support and any nuggets of wisdom! Thanks.
• in reply toeal59
Hello eal. I'm on the same medication as you are and doing quite well now. I have a pacemaker and have had 3 ablations, the last one in August last year. Brilliant, no more AF and feeling back to normal (aged 70). I'm so sorry you are having all this pain and suffering, and know just how you feel. I can only speak for myself, but after several years they got it right in the end, the EP's at Eastbourne DGH. I never thought I would get over it, but I have had wonderful care. Please don't think that you are incurable. There is light at the end of the tunnel, as I discovered.
My philosophy is I will ask for as much help as is available from medical professionals,
do as much research as is available to a layman like myself.
tell medics how I feel and cope knowing that they are well aware of the symptoms of the my medical disease.
and finally the most important, ACCEPT I have a defective heart, and make the most of my life as it is.
Hi Dadog1,
Like the others, I certainly like that one. Think I'll get it printed out as large as possibe or better still get it printed on a tee-shirt. It has certainly generated a lot of interesting replies and threads.
As I've said before, on other posts, I feel rather fortunate that my permanent AF doesn't bother me too much because of my heart block. Just get days when I feel completely washed-out, but not too often. And then there's the problem of my wife "looking daggers at me" when I keep falling asleep whenever I sit down for more than 5 minutes. I'm never quite sure if it's "me age", (71 in a months time), or the AF. Still, feel a lot more fortunate than my youngest brother, 10 years younger, who is going for open heart surgery just about now, in New Zealand and has been plagued by heart problems since his 20's. (not AF related)
Walter.
Hi Walter.
The tee shirt would be good. You could wear it next time you see your GP! As far as the tiredness and falling asleep...bit of both, I think. AF and old age don't go well together! I often wake up in front of the TV and ask "oh...did I drop off just then?" which elicits a reply from my partner "You did...for about an hour! You missed Question Time!"
Ah well....glass half full and all that....!
I remembered first time I visited ER after my first ablation with short breath and heart racing (later i knew it was as ablation side effect) , a doctor passed by me and told me don't be scared it is normal for a heart patient like you after open heart surgeries to have such symptoms!
I shouted at him like crazy , since my surgery was 13 years ago and I was living normal life till I got the flutter
I believe some of ER doctors should be more professional to evaluate those scared patients in better manner
Listening to patients complaints is very important for their medical evaluation , since each person is unique and treating them is not just try and fail
Hi Everyone, I suffer with osteoporosis, has caused me about a dozen fractures over the last six years; I have AF in long episodes, latest is 7 days, but hey, I am still walking with crutches, I can still talk, sing (not very well my husband says), my mother and sister both died of cancer at 50, my best friend has just been diagnosed with mantle cell lymphoma, I know a 50 year old woman who had an horrendous car accident and is now a tetraplegic and I could go on! But I am fine, I am still here at 77 years old and neither of my diseases are terminal. I make the most of what I have got and count my blessings every day. My good news is I have my pace and ablate on the 30th April, how good is that!
My best wishes to all you sufferers out there and may the love and care from everybody here help us all to enjoy what we can, when we can.
Angel healing and blessings.
What nice words, Ang. So important to look around us and count our blessings. My dear wife dealt with cancer for 19 years and died when she was only 51. I would have willingly changed places with her but life doesn't work like that. She would give anything to be where I am now (a bit creaky, tired and well worn) but I can smile, laugh, sing, make music, enjoy people and dream of good things...so I count my blessings like you!
My guardian angel shakes her head and sighs at times...but she's taking care of me!
david
That's the spirit Dadog, how great to read your outlook on life. We are all a pretty good bunch, we don't complain to much, and I for one have learnt that if anyone asks me how I am, I say ok thanks, because if you do tell them, they exit stage left.
Take care all.
farmerwalt• in reply to
Hi fibril98,
I'm like you, just say fine thanks and get on with it. I find the only ones interested are the ones with similar problems and the bunch here on HU. The only exception is one brother-in-law who always says, " yes I know you're fine, but, how are you really"
Walter.
Fantastic!! You hit the nail on the head! I get fed up with going blue in the face explaining how crap I feel allllllllllll the time!!!!!
How I have enjoyed this thread. The motto " if you were me" is definitely T shirt material.
My response to the question of how I am is "could be better,could be worse" which seems to satisfy most people.
The people who annoy me are those who say "you look really well" when I know I don't. & feel quite ill.
Like you ,Dadog, I wake up feeling good with a list of tasks to accomplish that day, but tiredness sets in, & little gets done.
I appear to be in permanent AF & don't have the horrible attacks like most on this site
I have been using the Alivecore ECG machine which clips on to the iPhone, it's very good. I also updated my BP machine to theOmron which shows if you are in AF. Modern technology eh?
This week, I attended the Optician, who diagnosed a Cataract beginning in one eye & a haemorrhage around the optic nerve in my other eye, so it's off to the Ophthalmic consultant soon. My comment on the way out was, " at least my Mammogram was normal last week
That's the way, brindiesmum! Glass half full! Don't worry about the eyes - I've gone through an op. for glaucoma in my left eye and a cataract plus a detached retina in the right and still seeing a silver lining around everything!
Hope all goes well.
David
Not what you're looking for?
You may also like...
Catchup nowhere I am now if you were wondering about me. I'm still alive and kicking again.
I got out of hospital on the14 April but still with swollen legs and unable to fend for myself....
Taking control of our own 'End of Life' decisions....
This week I have been working on updating my health Advance Directives (US) which is a subject that...
What do you wish you'd been told when you were first diagnosed?
So often, we receive calls from people saying they had not been told much at first diagnosis and...
A big Thank you
I wonder if you realise how comforting it is to be able to put my ipad on in the morning and read...
Let me tell you a story....
In Max's words, here's a tale of how the NHS is operating;
Yesterday was already going well. One...
Related Posts
How would you feel if your doctor told you to stop taking your anticoagulant, or any other, permanently ?
STAY THE HECK HOME OVER CHRISTMAS !!!!!!
Good news if you like NOACS!!
Response from Recent Dental Complaint You All Helped Me To Compose. Thank You.
Salt and sodium?? How can you no if your water intake is doing more damage than good ❤️
