What makes living with CVD the most difficult for you?

[Derefined-Dan]

I've recently got into this area of health and I'm really intrigued which aspects of the disease you find most difficult to live with. And how you would change your situation if you could.

Thanks for the response!

[dunestar]

For me the most difficult aspect of my condition is the anxiety which comes with it. I'm constantly aware of what my heart is doing and that makes me anxious sometimes. Learning to cope with it through breathing control, mindfulness etc.

If I could make a wish to change my situation, you know those Alexa things, well I'd have one permanently wired up to my cardiac consultant who is very calming and reassuring. I could ask him questions, day and night! Seriously though, I think the level of support from the medical profession for people with long term conditions is a concern - difficulty of getting to see GP etc.

[Derefined-Dan in reply to dunestar]

Hey dunestar, thanks so much for your response. Do you think you need to have a GP on call, or do you think that someone that is trained in Heart Disease resolution would be equally reassuring?

[dunestar in reply to Derefined-Dan]

Not necessarily the GP but somebody who's an expert in heart conditions and, critically important, knows my case.

[Kristin1812 Heart Star]

The repeatedly picking myself up and trying to get moving again, after each episode. I felt really depressed and helpless.

Also the events happen so suddenly, and it’s like losing another bit of my former self. Like grieving, I took antidepressants, and then needed therapy to come to terms with it all.

Lastly, Health Services are geared up much more for scooping you up, after a heart event, rather than preventing one happening. I’d change that!

[Derefined-Dan in reply to Kristin1812]

Hey Kristin1812, thanks for your response. It sounds like a really difficult issue to come to terms with, I hope you're handling it well at the moment. I'm actually hoping to help in the prevention side of it so what you said is great news for me. Is prevention something you ever worried about before you had your first event?

[Milkfairy Heart Star]

Feeling like Humpty Dumpty,

I have to put myself back together again after every hospital admission and cardiac event.

I can never quite put myself back together again the way I was before and I know I will repeatedly have to go through this for the rest of my life.

The wistful longing for my former life and loss of the future I thought I was going to have. The Portuguese have a the word saudade to describe this feeling.

[Derefined-Dan in reply to Milkfairy]

Hey Milkfairy, thank you for your response. It really seems that picking yourself up after an event is a common issue that a lot of people encounter, thank you for sharing your story and I hope you are doing okay at the moment. Has the medical service given you any steps to try to prevent future events?

[jimmyq]

The feeling of frustration that I can't do as much as I used to do. I am prone to overdoing it, activity-wise. When something comes up and I feel like doing it, then realising that I can't or shouldn't.

[Derefined-Dan in reply to jimmyq]

Hey Jimmyq, thanks for your response, I can imagine that gets really aggravating, is there any way to know what your limits are? And if you can slowly push those limits to encompass the activities you wish you could still do?

[jimmyq in reply to Derefined-Dan]

I went to rehab to establish my current limits and renew my self-confidence. Over time I do more and more but I will never get back to where I was, I am not 25 any more.

[Lezzers]

Hi, is this post for research purposes? If yes, can I ask who/what is the research for? & what is the ultimate goal? "