Gains and losses: When we have a chronic... - AF Association

AF Association

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Gains and losses

CDreamer
CDreamer

When we have a chronic condition such as AF we often have to review our lives and then adapt to a new reality. This is a process and can take a long time, different amount for different people. As we go through this process and accept our new reality we experience losses but also gains.

What are your losses and gains?

Can your articulate in 3 - 4 short sentences and say how long you have had AF for.

Diagnosed aged 56 in 2007 but had AF for quite a few prior, to my knowledge.

Losses - a sense of invincibility and the ability to know I could do anything if I set my mind to it. A sense of feeling deprived, that somehow I was missing out on something if I stayed still and needed to do, see, be more.

Gains - an ability to pace myself (been a full on/stop sort of person until the the last few years). An ability to be thankful for the the smallest and tiniest of pleasures and in doing so - really enjoying the moments! To feel satisfaction.

Be very interested in your responses.

PS - maybe not one for the newbies but maybe interesting for them to read.

47 Replies
BobD
BobDVolunteer

OK CD here's me.

Diagnosed age 59 in 2004 after moving house and new doctor. Wasted at least ten with incorrect diagnosis. (sound familiar).

Losses. Lack of energy holding me back from busy life in motor sport. Lost valuable customer after I had event whilst racing at Monza Italy . (Didn't want me letting him down even though I never let AF get in the way of racing.)

Gains. No longer had to put up with the XXXX. Learned a lot abut AF . Joined AF Association at inception and met some fantastic people who I still love and respect. Have made friends throughout the AF world from top EPs to new patients many of whom have learned as I have and now form the backbone of the support groups. Most of all I learned the value of a positive mental attitude which helped me greatly seven years ago when I had prostate cancer. Live every day as if it is your last. One day you may be right.

Smile! .It confused people.

10gingercats
10gingercats in reply to BobD

Fantastic last sentence BobD!!

I'm still learning my losses and gains but I know I have gained some true genuine friends in here in the short time I have been here

Edm174
Edm174 in reply to Vonnieruth

I agree so nice to be able to talk to people going through the same thing !! Family and friends are brilliant but they don’t understand AF !!

Vonnieruth
Vonnieruth in reply to Edm174

Don't think family really do I feel like a failer at times I'm no longer the strong independent woman I was I'm not able to be there for them now My middle girl has schysophrenia for many years now and sometimes it flares up again My phone can ring more than twelve times a day just for her to let me know she enjoyed her tea or something like that I know I'm stopping my husband doing things he wants like fishing all day and he does get narky at times with me over things It's like your in a different world

Edm174
Edm174 in reply to Vonnieruth

Aww bless you ! It is hard and they don’t understand they think it’s like a cold take you tablets and it’s all gone??? We have to be kind to ourselves we deserve it 😄

SRMGrandma
SRMGrandmaVolunteer

Diagnosed in 2002. Many years with only one or zero episodes/ year.

Losses: I can't think of any, really. Maybe on particular days I was feeling fatigued during an episode where I was wishing I had energy, and it slowed me down on vacations when it popped up.

Gains: Realized that my Type A personality and chronic worry was causing my body to rebel, so I completely changed to not sweat the small stuff. Realized I no longer had the luxury of a sedentary lifestyle so became so much more heart healthy with daily exercise. Made me change to plant based eating which has made me healthier in every aspect of my life and re-energized me completely. Made a great friend in my EP who is amazing. Tomorrow is 3 years post ablation for me....so I've gained a calm and quiet heart!

Hidden
Hidden

Maybe a timely reminder of MY journey!

Diagnosed with lone persistent AF in June 2014 aged 68 and it shook me rigid.....I don't do being ill!!

Losses - Realisation that I was not immortal. Exposure to fear, anxiety and a real feeling that my long awaited retirement was going to be a short and scary experience. Required to take more medication in a year than I had taken for most of my life, many with scary names and equally scary side effects. Would I be able to travel abroad and would I be allowed to drive the brand new car I had just bought!

Gains - Due to a string of lucky coincidences, finding out about the AF Association, the Surrey Arrhythmia Support Group and even, dare I say, Beancounter's Natter 'n Nosh. All enabled me to understand that there was life after AF and that there are some good people out there who do their best to make you aware of how to manage the condition and not let the condition manage you!

I'm sure my journey is far from over, 1 cardioversion, 1 ablation and one on the way so I know I have been very lucky so far but I now feel far more confident that Carole and I will manage to do all the things we want to do and enjoy the coming years.

Good thread CD.

Diagnosed in 2013 aged 31 after several episodes needing cardioversion for NSR to come back.

Losses - Independence. Not wanting to do the peak district hikes for fear of setting it off. Lack of empathy from people who pretend to understand. Lack of energy, desire, motivation on tired days.

Gains - Giving up drinking. Eating sensibly. Understanding more about the condition helping me in my job. Giving me less tolerance for drama & theatrics from people.

Also resonate with the lack of empathy from people who say they understand......mmmm.....not!

wilsond
wilsond in reply to CDreamer

Wish I had added that to mine too!

Hidden
Hidden

Losses:

Not being able to work at my profession because of fatigue and exhaustion...

Having to give up on the 35 lengthy swims twice a week or the long speedy walks...

Having to give up Alcohol - That one was difficult to come to terms with...

Realizing l was not indestructible and feeling a sense of shame to admit l was poorly...

Gains.

New friends in AF ( you know who you are)

Ditching some old acquaintances after giving up Alcohol...without being alcohol fuelled found them extremely superficial and boring- not very kind for me to admit I know..

Selling up and moving location something l had been thinking of for years but didn't have the courage to do..

My biggest success was acquiring my beloved dog as would never had the time or inclination prior to AF..

Yes...I would say AF in many ways has changed my life around for the better...

Carol.

CDreamer
CDreamer in reply to Hidden

Oh don’t you just find out who your real friends are? Know exactly what you mean! And I resonate with the shame of being poorly - how come that happened? What belief did we swallow that says only fit and healthy people are ok?

Interesting reading this! My loses are many, lack of confidence and adventure spirit. Loss of income having to take a lesser job with reduced pressures, loss of hope some days when the going gets tough. Gains there are a few... not touched alcohol for 20 years, maintained a healthy weight and diet for years, learned to love the basics of life that 99% of folk take for granted. Looking forward to better days if/ when i have a successful ablation... so this condition is a curse with perks... one of life's hurdles which we can all try to overcome.

For Goodness Sake!!! Life isn't a balance sheet. Stuff happens and somstimes it's a battle. Smile and beware of becoming self-obsessive. Happy weekend all.

Hidden
Hidden in reply to bennie06

Your right Bennie, but it’s likely to help others who are not as pragmatic and maybe experiencing difficult times with their AF......

Mickhall
Mickhall in reply to Hidden

Bennie is right shit happens and when you get to my age, i'm 69, unless your very lucky you have at times waded through a pile of dung. When you are first diagnosed with AF, normally after a stay in hospital, you would be a fool not to become a bit self obsessive as you slowly figure out the nature of AF.

From what I have read on here, most go through the same emotions, high hopes it will disappear with a cardioversion op, when it fails we suffer anxiety often in an excessive way, especially during the night when we cannot sleep, It's not about fearing death but the unknown.

We have confidence in the medics although the shine of that has soon worn off, at least for me.

When we realise we are not going to die in the short term, (Inshallah, as the people of that book say) we join this type of list and start asking questions and who better to ask than those who are in the same predicament as us and have similar symptoms, etc.

We continue to have our ups and downs but it slowly dawns on us there is a life after being diagnosed with AF and it is up to us how we live it. Finding out how to is a hit and miss affair and in all probability a life long work in progress.

Sure shit happens, but there is a lot worse shit that could happen than a diagnoses of AF.

Hello

Losses : self confidence has taken a knock,and belief in my GP is much less than previously,always trusted him before,and fear of stroke is always in the back of my mind ( mum and Grandma died of AF induced strokes)

Gains: having had to give up a high pressure job,benefits of slowing down out smelling the roses,thinking of my own health rather than everyone elses,tackling lifestyle for the better,which was prompted by diagnosis of AF.

Was officially diagnosed in 2013,,aged 54,but I'm sure I had it before,as the diagnosis came while being treated for something else,and I had the same symptoms of AF on previous occasions but didn't have a name for it!assumed stress was making my heart race and flip!

Life is different now,but I feel with the diagnosis I h have had a chance to take a good look at my life,and what is important,to me,and to have the time to read,garden,swim,see friends and family etc,simply couldn't do before with my job.

Will read other posts with interest too.

Excellent idea CD.

Diagnosed 2014 at 69 but probably had PAF for 7 or 8 years before that.

Losses: The old me who was naively invincible. Drinking a good wine with husband and friends. Dross in my life - things I didn’t really want to do and people I wasn’t keen to be with, but felt I had to. My tablet-free attitude.

Gains: A healthier lifestyle and more focussed outlook. Realisation that ‘it’ could happen to me and that every second should be lived. More peace of mind and happiness.

CDreamer
CDreamer in reply to Finvola

Love your reply

Hidden
Hidden

At the lowest point, I felt all sorts of unwelcome things had been acquired. I felt picked on, criticised and vulnerable and had become elderly overnight. There was a little card to carry at all times, a sense of impending doom, appointments in my diary. There were 38 visits to my GP surgery in the space of a year, and all for something that only happened, seemingly fairly inconsequentially, once in a while. I felt out of step, persuaded to take ever more medication that I felt would prove fatal, and had become timid, fettered, angry and embittered. There were a lot of bruises, most of them out of sight, and nettle stings.

Losses? Normality, the future, a sense of wellbeing, the enjoyment of life, freedom to eat when and what I wanted. I shopped online and stopped going out. Eating became a challenge and, with my treadmill getting a hammering, my BMI plunged into the teens.

Five years on, and this forum has helped in innumerable ways. I remember travelling back from London four years ago, uplifted by my first visit to Ian’s Nosh & Natter and feeling I could live again rather than merely existing.

AF takes a back seat in my life now and its impact, for the time being, has mostly evaporated. But I too have gained AF friends.

CDreamer
CDreamer in reply to Hidden

You certainly have been on quite a journey Rellim and so pleased for you that you have are able to put AF into perspective a little more now. 👌🏼

Hidden
Hidden in reply to CDreamer

Things are totally unlike the unhappy way they were, CD.

jeanjeannie50
jeanjeannie50 in reply to Hidden

Love your post Rellim and can identify totally with what you have written.

Jean

Hidden
Hidden in reply to jeanjeannie50

Thanks, Jean. I felt very much out on a limb at the time. As bennie06 says above, people told me stuff happens and sometimes it's a battle. But there seemed no good way forward and I disliked the way I had become so self-obsessive, with life seemingly not stretching ahead beyond a few days. Stroke or haemorrhage? They loomed large. So blasé now!

Lost:

1/ The last bit of top end speed.

2/ Money through time away from work.

Gained: Nothing

Hidden
Hidden in reply to CliveP

Understand you disappointment Clive but hopefully your outlook will be better in time.......

And here's mine - Losses: diagnosed at 55, had a stroke at 56 and invalided out of my career of 30 years as a consequence and life changed dramatically. Gains: I am 74 and still here and for that I am grateful. The road hasn't been easy and I still have PA/F with it's inherent problems but hey ho lol. My motto - live your life not worrying about things over which you have no control, cannot change, or spending your life worrying about your death. As my grandmother used to say and sing "Count Your Blessings". Try and relax, take control and make the very best of each day.

Diagnosed I think in 2013 aged 51, but reflecting know I suffered mis diagnosis for a few years.

Losses: confidence took a dent, my energy, believing everything a doctor told me ( there are some really good peeps out there, I just tend to question more now, thanks to this forum)

Gains: fitness levels have improved ( have joined a gym) I totally relate to jedimaster a lack of tolerance for people who moan unecesarily, a desire to make each moment count.

Hate the utter fatigue I feel at times ( like this morning) and I am sure I rattle when I walk due to the meds. Ho hum, after my coffee, shower and then gym, baking quiches this afternoon for a big lunch tomorrow. Live life I say x

Hidden
Hidden

Excellent Thread.

Diagnosed with paraxosimal in 2013 at 48 but probably had symptoms for 4 or 5 years before that maybe more just out down to exhaustion running a business , now waiting for an ablation .

Losses:

The old me who was in my mind invincible, the "strongest one", the strong businessman and driving force as I saw it . Drinking wine with partner and "friends", friends said very lightly as the ciricle changes once your not drinking or socialise any longer, and a wake up call as to who's important makes a stark change in your life . Some things I didn’t really want and people I wasn’t that bothered to be around, now gone out of my circle, purely out of choice . My don't take medication attitude, that's sharply declined not sure to my wishes but now accept none the less .

Gains:

A healthier lifestyle and more positive attitude towards the good things and just try to blanket out the negative aspects and people in life . A wake up call to make the most of life, work less and spend more family time and especially "me time" something that's always taken a back seat, if any seat at all . A more relaxed and happy outlook in an attempt to take every day as it comes and be more open to not being perfect or infallible , and typically there for everyone else, at my own expense.

And finding this forum with decent, kind people who I feel have helped me grasp this Afib curse enormously, in putting my mind at ease and not feeling so isolated, and giving me the realisation that it's a matter of perspective and living life to the full .

CDreamer
CDreamer in reply to Hidden

Excellent reply and one that really sums up for me how at the beginning of this journey how dark and different things can be but as we travel just how much change can happen and it still be ok - maybe not for everyone - but for many of us.

Maybe I should also add that I have learned a huge amount about human nature and response to illness, well I would as I have studied physiology for many years, but especially about myself, which I don’t see as self obsession but as physical. emotional and spiritual growth. Go well.

An interesting post CDreamer.

Diagnosed aged 54, but now realise I had AF way before then.

Losses: I tire quickly so can no longer enjoy long, hilly, countryside walks. Always thought I'd be able to join the local rambling club when I retired. No longer trust the opinions of the medical profession, especially the way they hand out pills without a thought to the fact that diet could be a factor in the cause.

Gains: Took early retirement and ended a long relationship. I love the calm and freedom both those changes have brought into my life. Found this forum and realised that I wasn't alone and here were people who really understood how I felt. Have made a very special and caring soul mate on this site and communicate with her daily by text or email.

The realisation that I'm lucky that AF is the only ailment I have, there are far worse things I could have. I eat a lot healthier now. Love my life and realise what a lucky person I am to have my home and live in a beautiful area of our country.

Jean

Hidden
Hidden

I think CD as you say it's the initial darkness that is the big wolf at the door which dominates your initial reactions , and in fact instigates some of the symptoms or manifests itself in many areas of your mind which in my experience made my own symptoms spiral . For me taking time to look inward and accept that it's not my fault which I did initially, but accept I can help myself by positive thoughts and changes which has been the most important thing . Finding the real you can be quite scary and enlightening at the same time, but we all can help each other as this forum does time and time again, as they say it's good to share, something new to me, but something I feel good about, strong.. Together.

'Officially' diagnosed in spring 2017 aged 68 after the occasional 'odd episodes' which I now know were P-AF which began 15 years previously suddenly became frequent and more prolonged.

Losses = The confidence to drive any distance. The feeling that life is infinite. A stone and a half in weight so far (yippee :-) ) , I do miss wine and some foods but it is worth the sacrifice. I seem to have lost the enthusiasm to go anywhere, I feel safe at home and in the surrounding fields knowing that like a wounded animal I can crawl home if I need to.

Gains = A healthier lifestyle leading to feeling fitter and well. After the realisation that a lifetime of stress has almost certainly contributed to my condition I have learnt to walk away from stressful situations , arguments and those things that make me anxious even if it means having to say 'no' to some people.

Hi everyone. I am one of the newbies!

Going to see cardiologist in 3 weeks time with suspected. AF.

Have had some very scary moments recently and life has certainly been very bleak and frightening.

Have read all of these posts with interest and what I am taking away from the comments is that life is what you make of it. A positive mental attitude and change of lifestyle (not easy for me - have always been stressed and in the fast lane) is really necessary. I need to slow down and smell the roses!

So pleased I found this forum. Some kind members have already given me good advice and help just by being here.

Thank you everyone who helped during my recent melt down.

opal11uk
opal11uk in reply to Purpletara

Absolutely, life is what you make it, you can spend it looking inwards and the poor me syndrome or you can get into a positive mind set and take charge of your life and exactly what matters. Never be afraid of asking questions, especially of the medical profession and always weigh up their answers carefully before taking further actions. You go Purpletara and may good luck follow you all the way.

CDreamer
CDreamer in reply to Purpletara

I think Andoiduser said it all - together we can move forward.

doodle68
doodle68 in reply to CDreamer

AF is so much like a bereavement.

..it starts with fear of the unknown,

..sadness at the loss of the 'old you',

..acceptance that this is something we have to get used to,

..moving on and looking for the positive things in our lives :-)

Diagnosed & put on pills aged 60 with PAF, previous episodes left unmedicated

Losses: Loss of confidence & adventurous free spirit (built a bit back after 4 years), sleeping with my partner (separate bedrooms due to more pillows, snoring, light sleeper, getting up to pee )

Gains: Improved health, less selfish, deep comfort from improved faith, more gratitude for each healthy day, improved relationship, sustainable work hours & more motivation t work, more perseverance on all matters, better appreciation what & who are important, better mental health overall than pre-AF coming back from deep anxiety in the first year after diagnosis

& then there's those apparent losses that probably are net gains, for example:

Given up skiing - probably would have injured myself by now and can't afford it now anyway

Given up tennis - but taken up walking basketball which I enjoy more, partly because it's new

Given up 75% of yummies that contain gluten & added sugar hopefully reducing the threat of diabetes

Thanks CD for raising this, very valid to newbies as well as the rest of us.

Thanks CD, a really interesting and thought provoking post. I don't often visit the forum as after my 4th ablation in March 2017 (I'm touching wood as I say this!!) I had almost forgotten how much AF dominated and impacted on my and my family's life since being diagnosed in 2006, but every so often I'm glad to be reminded as it was a large part of my life for a long time.

Losses: Lack of confidence. Losing my sense of independence and the feeling I could do anything I set my mind to. Feeling very subdued most of the time which meant I was hard to live with, but not knowing how to redress this.

Gains: Through the AFA, finding this forum and everything that's come about since; information, help, support and the feeling that at last I was not alone. The AFA and the backup they give, including the Patients Day. Meeting up with other AFers so widening my social circle to include some very lovely people who I wouldn't have met otherwise. Eventually being able to fend off the negative attitude that had begun to shape my life and see that this condition was something I could cope with.

CDreamer
CDreamer in reply to mrsg46

Oh well done you. I think reading others’ stories can really help newbies - my intent - thank you so much for posting. x

Losses. Time. Nervous energy especially at the beginning, coming up to speed on the subject, navigating different opinions. This really was a doubly whammy and for months was worse than the AF. Then, the sheer anxiety, especially the first time, when I took the decision, alone, to stop a drug (Amiodarone). The nervous tension that spoils a good sleep thinking of the visit to the doctor, then the confrontation itself. I wonder how others cope, because I am used to robust debate -- it is part of my job.

Gains:

Mine are a little different because I have a professional interest as a scientist in what is happening in my own body.

1/ Fascinating insight to several areas of medicine.

2/ Growth in thinking out of the box, and thinking from first principles.

3/ Greater familiarity with medical sources, and the ability to think for myself at speed. I empathise with Suzanne Humphries (Rising from the Dead) when she says that her training in Physics helped her most. Yep. My lowly A level in Physics helps me to reason and feel to decisions over what is happening. This has often led me to go against conventional thinking, and against medical advice and sometimes even to do the opposite. Such decisions now are easier, and with a track record to present to a doctor I am in a stronger negotiating position.

4/ Greater knowledge of myself, and what works for me, which means reducing medicines, and planning my day more carefully -- for instance with more breaks.

5/ More courage at work to say "No" to long days. I will do the work, but spaced more reasonably.

6/ Greater empathy with others, and the privilege sometimes of giving a few pointers to information for them to think about and discuss with their health team.

7/ Twenty-five years ago I almost died when the strings in the mitral valve broke due to an undetected infection (endocarditis). The metallic valve predisposes me to AF, but I am glad to be alive, and I have seen my children grow up.

CDreamer. I have only been aware of PAF for less than a year but losses and gains are very similar to yours. I am 67 years old. I have only had 2 episodes since ablation last October and that is where I learned I can do the things I did before unless I pace myself and go a little slower.

Excellent thread... I was diagnosed age 54 in April 2011 on Will and Kate's wedding day. On the plus side, A&E was completely empty.

Losses: Immortality. It had just never crossed my mind that I wouldn't go on forever, and suddenly I was looking at a floor in A&E and wondering if this would be the last time I saw the colour red, and if so, what I should feel about that. I also lost the old 'bull at a gate' way I used to tackle everything, a lot of peace of mind and some independence.

Gains: An ability to appreciate every day, even if it sucks a bit. Eventually, thanks to this forum, I also got back some of that peace of mind from understanding that I was going to live with this, rather than just die from it. Hopefully I also have more patience and empathy, though hubby may disagree!

Diagnosed eventually at age 55 but had it for around 10 years previous to this .I am now 62.

Losses:

Carefree attitude to living.

My lifetime passion of riding, competing and looking after young horses. Falling off on your head Is almost a certainty and not a good idea anticoagulated. This was incredibly hard as my whole life was built around this and my full time teaching job. This all co incided with retirement so I lost both at the same time.

Gains:

Being an all or nothing person I decided to cut my losses and take the opportunity to do something different. We sold our house land and stables in Lancashire and moved to the South Wales coast to be nearer to our son. We now have grandchildren and enjoy a relationship with the whole of my sons family that we wouldnt have if we lived 5 hours drive away. We have a different part of the country to explore with our 2 little dogs and I enjoy train trips back to visit my lancashire friends.

Giving up alcohol and cleaning up my diet has improved my overall health. If I hadnt had to do this because of AF it is highly likely that I would have other health problems now or in the future.

I have much better medical care here in Wales especially at GP level, despite all the negative press.

I have found other interests that I may never have persued as horses took up all of my time.

All the people who belittled the problems my AF caused now have their own medical crosses to cope with. We are all getting older and our bodies cant be perfect for ever.

Of course, I wish I didnt have AF or osteoporosis for that matter but for now life is good and I am trying not to think further than that.

Good thread CD.

X

Hidden
Hidden

WOW...

Good to see all the responses from all us ' Old timers ' who have been here since the start...

Just goes to show there is life after AF.

Cx

Hi CD,

1 - I was officially diagnosed with paroxysmal AF on 6 Jan 2010, aged 65. however, I had experienced severe palpitations for at least 2 years prior to this diagnosis.

2 - LOSSES - Nothing really, when my Consultant at East Surrey Hospital I burst out laughing! He gave me a rollicking and told me it was no laughing matter. Of course he was correct. However, I was always determined that it wouldn't ever control my life. I've done things I've always wanted to do,i.e. have a flying lesson in a glider, scenic flight in a seaplane around Sydney Harbour and climbed the Sydney Harbour Bridge and fly to Australia to see my kids and grand kids whenever ....

3 - GAINS - An ability to pace myself, to accept I have human limits. Increase my understanding of the condition and the drugs I am using and making very few concessions to the drugs. Listen to my body and be guided by 'my little voice'. Take no prisoners with this rotten thing - none ! no concessions at all really, still eat my green veggies, still booze on but not as much as when I was younger, still working 30 hours plus a week driving a bus - even survived major surgery involving coming off Warfarin (knee replacement) and on 2 July I have left eye cataract surgery. No worries.

Sod off AF, you ain't gonna control me !

That's it I guess CD, hope that is what you are after,

John

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