does anyone else recognise this journey?

[Ewloe]

we have our heart event, our lives in flux but then we manage to get our head around all of it, the medications, we settle into a routine. Us hearties are coping. We’ve come so far built up our mental and physical health.

THEN something different happens, it could be something minor, something someone says - a small comment - what did they mean by that? We read into things, or a new symptom, a medication change, or something big, a new event, new decisions have to be made just when we’d got our life into some sort of routine. We’ve adjusted and then have to readjust again. The worry ball is off rolling again. Questions go round and round, should we, could we, must we? What did that person mean by that comment, shouldn’t I be coping? Will this new medication react with all of our others, will we get side effects, will it work? An operation or procedure is advised again should we, could we, must we? Our mental and physical health take a knock, even the minor things knock us off track for a while.

Why can’t we just have a routine that works and we can keep it? And off we go on our daily lives again. We’re has the resilience gone?

wow that’s ended up being a bit deep!!! But it’s done me good to voice it and thanks to anyone who has taken time to read it.

[BobD Volunteer]

That sounds quite normal to me.

[jeanjeannie50]

A lot of deep thinking from you Ewloe, it perfectly sums up the dilemma of a person with AF and taking medication.

Sometimes we can't carry on as we have been because we're told things like our heart is enlarged, or the medication is probably responsible for a crazy ECG?

Life is never simple, but we are lucky if AF is all that we have. So many other far nastier ailments we could have our lives blighted by.

I'm wondering now if the effect on us mentally is worse than actually having AF?

Jean

[Hidden]

Hi Ewloe - I do relate to your post and the feelings you're expressing. It feels to me (and this is just my interpretation and may not be your reality at all) that this is mostly all about the anxiety that so often seems to come with this condition....it is for me, anyway....and the tendency to hyper focus on every detail while wanting to manage it, control it and head off the worse fears. This condition is a real 'feedback loop', fuelling anxiety then being made worse by being anxious. It's a bugger!

I'm doing my best to do everything I know to keep anxiety levels down (breathing, meditating, walking in nature etc etc) while trying to find an approach to the AFib that I can 'settle' into. It doesn't help that the condition seems to regularly change too, which I guess is where the anxiety management tools can really come into their own.

It's a real help that we can share those feelings on here. Thanks for sharing yours

[LearningMode]

I’m up at 4am in the States with major anxiety over this afib thing. Living with it for years and am really feeling quite defeated. And scared. So, thank you for your post. At least I know I’m not alone (although I wouldn’t wish this feeling on anyone). Best wishes!

Jules

[Hidden in reply to LearningMode]

Hi Jules - Really sorry to hear that you're feeling scared and defeated. Though, to be honest, everything feels worse at 4a.m. It's exactly what the "darkest hour before the dawn" is referring to. (Early waking insomnia here so I'm speaking from personal experience!).

If you're worrying at 4 a.m. the best thing to do is to watch tv, have a soak in a nice deep bath, read a book....do anything, in fact, that will distract you from the worry and the gloom of 4 a.m. But you're certainly not alone - it's clear that AFib and anxiety are bedfellows. I do hope that you feel better very soon and find a way forward with your situation.

Helen

[Hidden]

I know lots of people over 65 who have been diagnosed with persistent/permanent AF and they wouldn’t dream of doing anything other than taking their medication and just getting on with their lives as normal. They may have made adjustments to their lifestyle, but from the outside looking in, they seem no different than they ever were…..I took the opposite view, I just wanted to get the damn thing sorted out, good job we are all different I guess 😉

[Buffafly in reply to Hidden]

I’ve had AF for 8 days before flipping back into NSR and I was getting quite used to it, then felt like death this morning, why? Well I know why, very low BP presumably because my heart hadn’t adjusted to normality. So I had begun to think it was ok being in persistent at an average of 80bpm and at least I didn’t have to worry about setting off AF so did I want to be put back in NSR? The first day or so in AF was very rough but by the end I couldn’t tell the difference without checking my pulse.

[jeanjeannie50 in reply to Buffafly]

Hi Buff, I was once in AF for almost 2 months while waiting for a cardioversion and felt absolutely dreadful all the time. I could barely walk. I'll never forget that horrible time, that's why my heart goes out to people here when in debilitating AF. Some people have no idea how bad it can make others feel.

Jean x

[Buffafly in reply to jeanjeannie50]

As often said, we all differ, which is why it’s good to be able to share. You are coping in permanent AF now, aren’t you?

[jeanjeannie50 in reply to Buffafly]

Yes, I am thank goodness. That may be thanks to my last ablation.

[wilsond in reply to jeanjeannie50]

Yes ,me too . It was vile. X

[jeanjeannie50 in reply to Hidden]

See my reply to Buff. My AF was diagnosed at 55, but feel sure I had it long before then. There was a time before when I was driving home from work and felt I was breathing but getting no oxygen. Went straight to my docs surgery to be told they couldn't see me. Changed surgeries and have never looked back.

Jean

[Buffafly]

I understand what you’re saying, I had settled into a comfortable routine of one longish episode of AF and a few shorties every year but just been hit by two long episodes in a row combined with some weird new symptoms. I just feel tired at the thought of trying to work out, helped by my GP hopefully, why things have gone pear shaped and what can be done to get back to ‘normal’ or better.

[Threecats]

Hi Ewloe,

I certainly get where you’re coming from! For a control freak like me, who craves organisation and predictability, the totally random and unpredictable nature of AF has certainly messed with my head! I am an anxious type anyway and my anxiety decided it was party time when AF rocked up in my life!🙄 As you say, you think you’ve got a handle on it, have made a decision on treatment and are getting on with things when … whoops, off it goes on a different tangent and you’re back to square one! I think the universe is trying to teach me to be less rigid and more flexible with life, despite me insisting that I like rigid 😀

I was having a particularly challenging time with anxiety a few months ago but then came across a book which suggested visualising the anxiety as a ridiculous little creature, the more outlandish and ridiculous the better.. I’ve called mine Kevin ( apologies to all the Kevin’s out there😄) and imagine him as a little troll like creature with orange hair and a very squeaky voice. It sounds utterly bonkers writing it here but somehow , visualising ‘Kevin’ getting more angry and squeaky, telling me all the terrible things that are going to happen if do whatever anxiety provoking thing it is, has enabled me to just ignore him and do it anyway and sure enough, Kevin has eventually shut up! As I say, it sounds daft but it has been a very helpful technique for me, hence my putting it ‘out there’. . Either that or I’ve finally flipped😂

All the best to you, TC

[Singwell in reply to Threecats]

Love your Kevin!! We have one in our household- husband can sometimes feel a bit low and demotivated. Not ideal when you run a home business. We call these days 'Feeling a bit Kevin'.

[Threecats in reply to Singwell]

The little rascal get everywhere😀

[Buffafly in reply to Threecats]

I love it 🧡

[secondtry]

Well said. These days I focus more deliberately on building my mental resilience back to pre-AF days, so I am as ready as I can be for whatever comes.

[Nigel2000]

Good point about resilience!Afib really sucks the resiliency out of me.