How open should one be?

When Gareth asked me if would write a blog on living with heart failure I as always thought “why not?” Lorna & I live to enjoy & experience new things with this extra life we have been given.

The majority of feedback I’ve received has been that I am very open about the negative mind talk I suffer from. The reason that I am is because I know probably all heart failure patients suffer from it at some stage and when I admit to others so many say “I thought it was just me”.

 The negative parts of living with heart failure do not define me, it is the desire to overcome this negativity & enjoy my life that does, I am just lucky I am succeeding.

My life with Lorna & our chronic heart failure is on the whole a positive one, we understand tomorrow may never come but you cannot let that become part of your thinking. We plan for my retirement at 55 (am 48 now, Lorna 39) and we talk about visiting the world in retirement forgetting sometimes that we really can only live for today.

I made a decision about a year ago, after becoming involved in a heart charity called pumping marvellous that focussed on heart failure awareness, that I would actively try to raise positive awareness about heart failure. Lorna & I featured in a Scottish newspaper article about living with heart failure and I told no one before hand, funnily enough it was published on the day I took my football coaching kids course and the 3 other coaches from my 2005 team had no idea I had chronic heart failure and yet here I was running around.

My boss emailed to say good article and from that moment my relationship with him changed. I felt I could actually discuss it with him when in past it was never discussed. The majority of my work colleagues expressed surprise at level of my heart failure “you look so healthy” being a familiar phrase. And so by being open I now have a group at work who want to raise funds, spread message on social media & yes I still get the odd “should you be really doing that” if lifting or pulling anything but I know they care so let it go over my head and if anybody within this community finds someone being diagnosed with heart failure importantly I know they know where to look for help & information.

8 years ago” Dr Doom” told me I would probably never work again. Exercise was out of the question, if not dead within 5 years I would be on transplant list, I know some still get told versions of this story and that is what scares me most. I had the strength of mind to realise the depression like thoughts I had & still have were part of condition. Nobody told me I just knew so I could fight them from start but how many don’t? The Dr’s and nurses are superb at fixing us physically now but they forget the mind can be stronger.

 I am inspired by the stories I hear of fellow heart patients setting goals & managing heart failure , even small goals like Annette’s walking everyday for 20 minutes when she hates walking but she sticks to it so magnificently, some making brave decisions like young Jenny to turn off ICD defibrillator because she fears it affecting her ability to live independently at uni, Lorna choosing to not take medication as feels ok without them so would rather not risk the unknown risks to other organs. This is a generation with no one to turn to but them selves. We will make mistakes but the next generation will be able to make more informed decisions based on our experiences. If I progress with blog I will introduce you to so many inspiring people like Tania, Rob, Nick, Sam, Nicola, Claire & many more proving living positive with heart failure is possible if you choose it to be.

So when Lorna & I get feedback from fellow heart patients within even heart failure community that we are reckless or not that bad they couldn’t be further from the truth every decision that we have made be it to complete London Triathlon, return to work, stop medication or even just enjoy getting drunk is taken against a backdrop of negativity, fear but careful assessment of impacts negative & positive but always ends with the positive “ok I want to do this, what do I need to do to make this happen?”

This way of living with my condition has given me a rather amazing journey, meeting amazing people, I set out to enjoy everyday, try to learn something new or experience something new everyday. Of course I fail more than I would like but my life is positive and most importantly happy.

So I made decision with blog to be honest, as my countdown to device change continues with cardiologist visit next week, I hope to share the thoughts & fears I feel then I know finally a positive outcome with the NHS will happen by sending me on my way again to the now 10 years till next battery change and I will fill it with wonderful experiences and enjoyment because the positives far outweigh the negatives by miles on this journey.

The countdown continues
*The opinions expressed are the guests own and do not necessarily reflect the views of the World Health Innovation Summit.

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