Good morning. How different we all are! I just read a few posts. Some people are running up hills before breakfast, others are searching around for a tiny drop of energy.
I thought I'd describe my day. It's pretty planned as I easily get exhausted or find myself doing too much, and have a severe drop in HR (40), and BP (90/60), and feel ghastly and faint, then need to sleep/rest for most of the next day. But most days I start with a fast walk or exercise class (3 times a week), then might meet up with a friend. If OK then, I go shopping or out for lunch with my husband. Afternoons are spent resting, then perhaps a bit of allotment gardening, painting, tidying up at home, and very occasionally out in the evening.
It's very different to my busy life pre heart, but it's what works for me now.
My message to all is. Find out what works for you. I've had a difficult journey, the ghastly depressions, and the rollercoaster of repeat scares and treatments. It's taken me ages to find this new balance, and it works. The cardiac liaison nurse, at the end of a phone, has been the v best, occasional support, to me. Like lots of posters here, I like things explained.
History. Over the last five years I've had three HAs and nine stents (apparently, it's not a record!). Keeping my BP and HR low seems to deal fairly well with the unstable angina. I also have a leaky valve.
Written by
Kristin1812
Heart Star
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Ah! Thank you. Made me tear up! I like your approach, too. My daughter said 'You're still you. You're not defined by your illness'. Wisdom of the young!
Hi Kristen, you have come a long way to get where you are today well done.! When l was in hospital for months l had to "man up and grow some ****s" which l did and without blowing my own trumpet l was really brave with all the awful procedures l had to endure. l didn`t cry once. Then l came home and like you l am still grieving for the person l was and the busy life l had and will never have again because of infections that attacked and destroyed some of my heart. lt gives me hope to know others have adapted and accepted a new way of life and are ok. Thanks for the wise words.
Hi Kefalonia. Thank you. Sounds like you've had a really terribly difficult time. And quite a bit just imposed on you. Felt v v unfair? But, aren't we both brilliant to have come through all this stuff, now for the good bit.......... finding new ways of enjoying ourselves and our precious time here. I must be v slow, but it's taken me ages to realise this.... that there's no point in wasting valuable life-time! I still have slippy days when I find my self sliding into self pity. But they're getting much less.
Do keep posting about your journey. It's amazing how much I, and I'm sure, others, have learned from how v differently people are getting their lives back.
I totally agree, Kristin. It took me a good few years after my diagnosis of heart failure to get my head around everything and realise what worked for me, kept me feeling well and happy. I think I'm getting close to achieving the perfect balance. It can be a bit of a juggling act though - my reduced hours at work give me more time to look after my mental and physical health, but I do worry about money and sometimes feel like a bit of a...shirker/let-down? When those feeling resurface, I take a step back and look at the bigger picture. As you say, the life we have is a life with a heart condition and it must be lived. I think it takes a lot of time, effort and thought to get to the stage where you feel you are working within the confines of your health condition without letting that health condition define you, but it can be done. Part of that, ironically, is accepting your heart condition as a part of you and working with it, rather than fighting against it.
Thanks for sharing your thoughts and good luck with it all!
Yes, life can be different but we need to remember that for some of us THAT life put us in the position we are now so maybe a change is needed. As yet I haven't got into a new lifestyle as I still feel I am in recovery and due to my relapse I am still not driving.
I was due to go for my assessment for my rehab programme on the 10th August which has now been cancelled and as yet it has not been reschedulled.
I think with support we will design our own NEW us, hopefully it will be even better than the old one even if not obvious,
Hi Kristin. I'm really glad that you've found your balance. You've had a very tough time of things and like other posts on the forum, your story gives inspiration to others. There is life after heart problems once we accept that things need to be changed. The changes are often for the better but we perhaps didn't see the need for them before.
It's lovely to read how people are managing, in different ways, all types of heart conditions, at the moment I still can't get my head around it, I want my life before diagnosis back, I actually get upset when I see people enjoying themselves, thinking that used to be me, I cry about it all the time, I am even jealous of my best friends making plans for hols, night outs, which I go to but struggle, just back from a holiday and felt ill since, I am now thinking it's just not worth going away, I feel bad for my partner it's not his fault, not what he signed up for, I think we should split up so he can get on with his life, it's too short to not have fun, mabe one day I will learn to cope with it, going on to half pay which doesn't help x
That all sounds v tough for you. You are describing so many familiar feelings and attitudes I've had them too, and still do, but less so now. There is another possible state to get to! Thank goodness I've just recently found myself getting genuine pleasure out of my friends holiday photos and stories. Envy feels v uncharitable, doesnt it?
It sounds like you and partner might, together, explore some good ways of enjoying yourselves, which take into account your new state of health. I know that sounds easy, but you are still you, and just possibly (I'm being ironic here..... just need to say) he might love you enough to do the journey with you.
l`m glad l could help. l think reading all the other peoples experiences really helped me, thanks to everyone who replied to my posts. l looked at old photos of myself the other day BIG MISTAKE!!! there was this carefree, fit, funny, good for her age groomed woman staring back at me and l didn`t know her, which made me so sad. My lovely family and brilliant friends lives have not changed but mine has drastically and there are times when l feel so sorry for myself. lf one more person tells me that l am lucky to be alive and that statistics show l should be dead l will scream. A part of me is dead inside and l do feel ungrateful feeling this way. l know that there are loads of people much worse off than me but l think its the unknown future that plays on my mind and that if l had gone into hospital sooner the sepsis wouldn`t have eaten my heart valves but l thought l just had a tummy bug as l worked in a day nursery. Things will get better l know but its hard to be positive all the time and hide how l feel so l don`t worry my family, they are desperate for me to be back to my old self as they have been on this awful journey with me. l sound a real martyr but l think maybe some of you understand and are going through the same thing. l am not suicidal far from it but its a struggle. Then l get a good day which really helps so l am hopeful. Thanks for listening gang. Take care.
Kristin I think you hit the nail on the head when you said finding balance and it working. In my experience that is all you can do and all the advice and guidance, be it professional or otherwise, does come down to that. A day at a time. Find what works for you and if it ain't broke leave it alone. Sorry can't give any other magic comment but your experience is mine and it works for me also. God Bless.
You lovely person! You are v encouraging. I find myself standing back, looking at how things really are and telling all, to this group, and some nice person like you tells me how similar it is for you, and I think I must be doing OK. Means a lot. Thank you.
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