Survivor guilt

 As new year & Hogmanay approaches I always get deep into my own thoughts "what have I achieved this year" and "what is my target next year" is never far from my thoughts at this time. I love Hogmanay with it's tradition in my childhood household as a new start. My parents instilled looking ahead positively at this time as I grew up.

I have always been like this. Some have called me a dreamer but as I look back on my life I have a history of achieving those dreams eventually. I have experienced & enjoyed so much I surprise myself at times with memories that spring into my mind from surprising triggers. Like my detailed tour of Westminster & drunken late night on the famous Westminster terrace as guest of then rebel MP but now shadow chancellor John McDonnel. The debate went on until 2am in the morning. We got absolutely legless & he drove us home.

This sense of trying to experience so much was heightened 9 years ago when diagnosed with heart failure and told the blood clot would have killed me if it had moved. 

I was so lucky to meet & fall in love with my fellow heart patient Lorna early in my heart journey. I was reckless in the early days after diagnosis when I didn't understand the strange feelings I was having & I blew any savings I had. 

Lorna gave me direction & structure to achieve goals together. I have settled down to a busy but wonderful life.  The Olympics, Commonwealth Games, Tours of Scotland, European & Scottish parliaments, the list is staggering for 2 heart failure patients but basically we just want to enjoy this life so much but we also strive to include & show the kids to follow their dreams also.

I accepted early on in my heart failure journey that my death could be instant at any time, I do not fear it as I believe 9 years on those closest to me will remember me fondly with shared happy memories. 

I have spent so much quality time with those I love especially nephews/nieces I simply didn't know before. Lorna & my daughters will be financially secure & I tell them not to mourn me for long but instead to fondly remember me then carry on the dreaming.

If your close to heart failure groups you see death regularly although not as often as you would think now because of modern medicine. Not all of them shake me and I just accept majority of them as part of my journey.

3 so far have affected me badly, Sandra, Helen & Yasmina I remember exactly where I was when I got told. Their own heart journeys touched me and when they suddenly ended I panicked at am I doing enough to justify my extended life. Have I done enough with those closest I love so much. Have I just fallen into complacency at my achievements so far? My life comes under a dark cloud for a while as I consider the implications, I become scared, I become angry, I have come to understand the term is survivor guilt.

So this month I got another shock that shook me but from an unexpected person not heart related. In my 2005's boys football team I have one lad who plays for 1st team who if I am short & games don't collide I call on the Friday & he comes and plays for my team. I secretly wish for this every week. His mum is always so positive on the phone & usually when she drops him off she tells me he loves playing for my team. She usually rushes off to drop the older boy at his football. I called last Friday night and she says straight away yes as she explains he gets excited when he heard her say "hi John". He arrived with his dad last week and I love coaching this lad, his enthusiasm is infectious within a team, Kyle tells me he loves playing with him. Every game he listens and always does what I ask, we win 6-1. I speak to his dad to tell him this & he explains the lad enjoys my team because of how I coach him. He feels my team would beat the 1st team now, The respect is mutual & my dealings with this family are always a joy & positive.

As I am walking with Hamish on a Thursday morning with a full positive day planned I get a text from football Team Secretary, the mum it appears had brain hemorrage and died instantly day before. She was 45 with 3 young boys. 

Suddenly I regonise the feelings of panic within me, the questions will take over my thoughts, I need to be careful I don't shut out Lorna and others during this process as I have before. I need to be careful with those that annoy me because my reactions can be brutal.

Like any experience hopefully you learn from it so straight away I discuss this with Lorna and of course she too has similar thoughts, I need to be careful especially at work because it isn't important to me at times like this. Everything is about Lorna, family & the kids. I have an anger within me that is hard to explain. I worry about Lorna & the girls after I go.

The last few days have been hard & I so want to cuddle my daughters but they are so far away. I beat myself up that I am not doing enough with Lorna & family especially my dad. I need to make next year more full & more worthwhile than even this year. I do not fear death but I worry for those close to me.

This process will last for weeks maybe months until I plan something with those I love, I need to visit Phil or Robert. I must tell all I love them. I need to cuddle Lorna more. Survivor guilt is not a bad thing if you understand it & use it to overcome tiredness, fatigue and pains. It just isn't a nice period in my journey. This is one reason I drive myself to achieve so much. I know I am so lucky to get these extra days, months & years. I just wonder why I got them when some didn't.

My work journey

My employers of 20 years have played a huge part in my heart failure journey, my salary is above average,  I am luckymy benefits include full sick pay for absences up to 4 months, my pension is good even if I doubt I will use much of it but death benefits will financially secure my family after I go.

At the time of my diagnosis my career was at its peak in Cornwall. I was recognised as good at my job and further career opportunities looked good and most importantly I loved my job. I felt 100% confident in my abilities. So what has changed over the last 9 years?

My 1st long lay off after diagnosis was 4 months and I returned to a new challenge in Glasgow. Looking back I know now I made my 1st mistake here. But I was in denial of my chronic progressive heart condition. I didn't lie to my employers I just didn't tell them the truth because, at that point, even I didn't know the truth. Did they support me? I don't think so and what we had was 2 sides not trusting or understanding each other.

My return to work should have been slower & more structured. Not once did I meet occupational health because I returned saying am fully recovered. In retrospect I should have accepted maybe a drop in role & salary would have been the best option. Instead retaining my salary was everything to me. Nobody had that conversation with me & they basically believed me when I said I was fit to return. 

It soon became clear that my personality had changed, my mind was muddled, I fought to hide it but only made it worse, the problem was not physical it was purely psychological, paranoia was at the centre of it, negativity had replaced positivity. Motivation was a daily problem, I wanted to work but would question was it worth the hassle. After facing possible death and recovering it's easy for your mindset to become 'is this really worth it? shouldn't I be doing something more with my life?'

When I talk to fellow heart patients now about them returning to work after being diagnosed I say what my GP said to me 'you have been through a life changing event at a relatively young age, it will change you' I only lasted 2 years before my heart failure reared its ugly head again. This time I took even longer off and as a result my career in a job I once loved was hanging by a thread.

My involvement with my employers during this time off and prior to my operation and then my return after I had my device fitted which uniquely made me 100% device dependant was again handled poorly by me. But this time I had no one to ask, I had no fellow heart patient to give me advice. I fought my employers. I hated them for the perceived injustice when what I should have done is admitted my own faults and tried to find the best job for me irrelevant of salary. After my return I did reach 2 years as a green performer but looking back I didn't enjoy it. I fought the fight admirably but stupidly. I struggled through not enjoying it and some members in my team did not see my previous pre diagnosis leadership skills that I had been praised for. Basically I survived by the skin of my teeth. Now I am the level below on a lower salary and I still struggle sometimes but I am a green performer and once again I enjoy my job. 

So what has changed? The truth is it comes down to my Store manager, people manager and regional teams attitude towards me and my condition. I feel confident to openly talk about my condition and problems to them. I trust them! I've had to accept that I will never reach the peaks of my career again but I am an experienced manager with so much to give and for the 1st time since my diagnosis I can talk to my manager and people manager about appointments, fatigue and illness. I have, for the 1st time, explained how I struggle in meetings. They ask me if I need help and offer genuine support.

It has been such a steep learning curve on how to handle a chronic progressive heart condition and still work. So many mistakes on both sides but hopefully we can both use our experiences for future heart patients returning to work. After all more of us are living so it is happening more often. 

At a course a few weeks ago in one room were 6 people out of 20 who have played a huge part in my work journey. 2 of them were very bad experiences but I realised that the majority were good ones. One I wanted to apologise to for basically receiving the worst my condition made me. The regional people manager mentioned to this group my End2End being inspiring and I thanked her after it for everything she had done during my End2End. This lady tracked and followed my progress on Facebook often offering support at crucial times. She spoke at the meeting that day about changing cultures and I believed her because I trust her. I wanted to hug and thank her because for the 1st time I believed my employer was willing to learn about how to support those with my health problems. She has spoke consistently at our store meetings in the last 2 years about leadership and its importance. And so I want to tell her she is leading the way and I have seen the change for good within our company. However the fear and paranoid thoughts of being extremely open about my heart condition are still there for me. Maybe because when I was diagnosed I was told I'd never be able to work again! 

Within the next 2 years my device will be changed and I once again will need to return to work after long emotional life changing lay off but I will approach it differently and I believe my employer will too because of those I have mentioned above. I will approach my return more open minded. I will ask for more time and a structured return but not expect or demand it. I will be honest with myself on how I am feeling both physically and mentally. Then more importantly if not up to job I will ask what they can offer but not make selfish unreasonable demands. Hopefully we can reach a decision that suits us both because at this moment in time they have a highly motivated experienced employee who hasn't had day off sick in 2 years so both sides benefit from me being there. 

Employers, in general, need to learn due to medical advances more employees will return to work with medical issues like mine but they will only learn if more like me speak up. It is scary to admit failings but I have seen positive changes so it does work. I have high hopes for heart patients and future work opportunies.

Why blog

I didn't blog for a few weeks which didn't mean I wasn't looking for topics but rather i myself didn't find them deep enough for a detailed blog.

The point of writing a blog along with Facebook page "The John & Lorna show" is to highlight living with heart failure can be positive, the feedback about both is always positive. 

I sometimes wonder if both actually work in their aim but then I remember they also act as a reminder to both me & Lorna of our journey because as heart failure patients we forget majority of it so in the bad days they help raise the spirits.

So much goes on in our life. Lorna is fighting her back pain which will hopefully end soon with operation, through the night neither of us heart failure patients sleep well yet is strange to listen to someone cry out in pain while still asleep. Her business is going exceptionally well despite the pain & amount of painkillers/muscle relaxants She takes. I have become a house husband but in reality it just highlights our team ethos. Together we will fight through this like we always do.

Lorna is very interested in work of food bank charity Trussell trust who she is in contact with, we might do something for homeless this Christmas. Now Lorna up & moving more we can maybe book a wee road trip somewhere in Scotland.

I am genuinely interested after Conferance 2 weeks ago in role of primary care for heart patients especially GP surgery nurses, we have the contacts to take this forward in Scotland but will take focus. When we met the people involved in this I want to support them so much but am wary because it deserves our full focus but can we give that? 

My 2005's football team I coach have ended season with 75%+ win ratio, I have completed another coaching course, I do this & commit so much time to it because of Kyle yet when no parent would step forward to take on this bunch of no hopers possible 2nd team I knew full well I would need to become a fully qualified coach not through necessity but because my personality would demand it. but now my 16yr old nephew wants to go through my next stage youth coaching badges with me which I will love as I so enjoy being with him watching him grow into a young man.

I have grace up for new year as usual so how will we celebrate this year & look forward to next year. I have Austwiz in February with Morgan & Florence with Ally Bally later in April/March.. No doubt I will just need to get to airport after Lorna has organised it all.

I have my training for my 3 mile Loch lomand swim but am suffering an exercise hangover after John O'Groats/Lands End cycle so in reality haven't started. So much going on in my head around this yet I just can't get into pool.

Am enjoying work leading up to Christmas because since End2End I fully focus on it, my next steps are complete bar the usual captain Choas moments, my staff seem happy, dept is coming on & I feel in control. I completed a 12 hour shift other day with no real breaks but achieved so much. Explaining to fellow colleagues I just get into situation where my device ticks along at say 80/90 beats a minute for whole time, I am fully alert throughout yet so aware to sit down & with 50 seconds my whole body tempo will change probably for rest of day, fatigue & mind fog will come quickly. I know when get home this will happen.

So here I am having a lazy Sunday morning in bed with Lorna feeling guilty I am not up doing something rather than writing a blog but it has made me realise maybe this wee lazy Sunday morning is not as bad as it seems so highlights another benifit of blog.

"What does a GP practice nurse do"

Lorna & I love a road trip and just need an excuse to set out on one, so 24hrs after setting out on such a trip to Manchester we are back in our own bed knackered, sore & happy.

The reason for this road trip was all my idea, the meeting we attended was originally unimportant because the sole reason I wanted to attend was to meet in person some NHS people I had followed & chatted to on Twitter. What I learned was how important a practice nurse can be offering consistancy of treatment as GP's jobs get busier. More importantly I met some incredible people.

Heather & Louise are 2 practice nurses in Manchester with a vision to make practice nurses central to chronic patient  care. A simple idea that I know makes perfect sense yet these 2 are just starting a fight to get it recognised nationwide, they have chosen to reach out from their comfort zone starting with the Conferance today because they believe so much in it, following their fight from now will be interesting, as a chronic heart condition patient these 2 are exactly the patient focus treatment I received so I know it works. Like myself they deflect praise but I found both inspiring today because I saw their passion for patients, the desire to make the NHS patient friendly & like myself I see positive & inspiring people around them.

I had followed John on Twitter and his understanding & desire for change needed in NHS but again never met him but up he stood today to address group & Like 2 above he was more impressive in person than I imagined. If you think someone on social media is interesting you can never really tell until you meet them. John exceeded my expectations 

Up next to address group was Julie Naylon newly qualified & again I loved her attitude of fully backing Heathers & Louise's patient vision because of her own experiences, chatting afterwards turns out her Doctor sister works at Maryhill health Center, small world & I look forward to following Julie's career through socail media.

I was approached by Sharon Poll a practice nurse in Liverpool with the line "you John Kinnaird" being Glaswegian my initial caution was overcome as apparently we follow each other on Twitter, the following 10 minute chat showed exactly the same passion of all those above so along with Julie I now have 2 more people to look at for examples of how the NHS can change for the better just by listening to patients.

I think along with Lorna we were 2 of a very small group of patients there today yet when I spoke to all of the above they got excited about my journey, showing genuine interest in me as a patient. I write this blog for them with the simple message

As a chronic heart failure patient believe me your patients will love you simply because you ask & listen, you all have welcoming personalities & anything myself & Lorna can do to help is no problem. I loved meeting you all today & so wish it isn't the last meeting

Well done Heather & Louise thank you for inviting us.

Praise & how I hate it

I woke up today at 6am & got up at 6:45, I got my football coaches kit on, I don't know why as it hardly improves my performance as a coach but is the done thing, I empty washing machine & hang up clothes, then refill machine. I walk Hamish the dog, then into the car to go to Maryhill to pick my nephew up.

The match kicks off at 9:10 so I pick Jordan up just after 8 then next is picking up a player Patrick in Paisley so arriving at pitch at 8:45, my team lose 5-2 & I am gutted so then it is back to Glasgow with Jordan. Dropping him off at 10:45am. I loved my time with my 16yr old nephew.

On way home I realise the 1st team are playing at pitch on my way so I pop in & stay 20 minutes longer than I should. therefore finally arriving home at 11:50.

Lorna is waiting on me for breakfast but I forgot.

Make Lorna some breakfast, Empty washing machine, hang up the washing, put more in, have a shower, iron a shirt & off to work by 12:45 which is me till 22:30.

I get home & Lorna is already asleep As not feeling good today, make my stirfry dinner, empty washing machine, hang up washing & refill washing machine. I walk Hamish & get to bed at 12:30.  

18hrs on the go 

I have a friend Isobelle at work who always tells me that myself & Lorna knacker her out just trying to keep track of our life's on Facebook, I got a message today from another heart friend on Facebook messenger on how she admires myself & Lorna enjoying life. I have an old colleague I haven't heard from in about a year message today to say "how am I & loved your cycle stuff".

But this blog isn't about me it is about Lorna, currently well into her 6th week of being housebound & extremely restricted in movement due to her back, she is slowly improving as we wait on the procedure that hopefully will finally stop the pain but just getting out of bed is still so painful for her.

My day involved everything I love, my family, football, proving doctors wrong etc etc but none of it would be possible without Lorna. I literally thought today of nothing other than what I enjoy, not one bad or worrying thought. hardly a hard life even with heart failure.

Even in such pain she runs her Internet business & it is growing, she is planning Christmas for her business & us, she organises my whole life so I just do the things I love, without her I doubt I would still be in my present Job and I dread to think where I would be. She has finally brought contentness & calmness to my life.

So when I am praised for my life as a heart patient I genuinely feel slightly embarrassed because I find it so easy due to Lorna doing all the crap organisiding & boring bits I can't be bothered with. I look back on our 7 years together and we have achieved so much together as 2 heart patients just trying to enjoy life despite the difficulties.

Touring Scotland, Olympics, Commonwealth games, End2End. the list is endless & not over yet.

I love the John & Lorna show but I just wish Lorna would blog more because she is an amazing woman living not only with heart condition but now chronic back pain but still achieving so much. I will post this now and she will be so annoyed she didn't approve or edit it before I posted it,

My day was full, very tiring but so enjoyable only because Lorna makes it that way and I can never thank her enough for everything she does for me.

The show goes on  

Winter blues

The winter is closing in fast, time to get the thermals out, flu jab has been done, Lorna has stocked up with a dozen hats & a dozen sets of gloves for me so by March I might have a pair left. Winter is without doubt a nightmare if living with heart failure. 

So what goal or goals can I set myself to keep me going? 

After a year which has contained so much it is hard to get motivated n choosing something that will occupy my thoughts as the winter slowly ebbs away my health. Snotty running noses, chesty coughs & wee cold symptoms will surely come to try and kill my fight. 

I enjoy my job and feel motivated to deliver excellent standards, hopefully get back to being organised and getting ahead in everything. I enjoy working with my wee team so as the busy Christmas periods approaches I know work will occupy a huge part of my days, weeks & months ahead but that is only half of the story.

Work will get me out of bed as it always has & I am so lucky I have it but if I let myself become lazy & unmotivated outside it then that too could suffer.

I know if I slow down my condition & it's inherent laziness could take over, my mind talk becomes full of "can't do" or "can't be bothered" so it is important I fill these cold, dark & miserable winters days with optimism. 

So I owe Lorna quality time together  hopefully with a couple of trips away around Scotland, what shall we do at new year to celebrate a brillaint year and welcome in another?  I have a trip to Poland with my 18year old to plan for February. 

Shall I do the Edinburgh New Year's Day Triathlon to keep me ticking over or is that just too selfish?

What I find interesting is as I plan to fight & overcome the oncoming winter blues I wonder what I would do if I didn't have my heart condition? I bet you I would be unprepared for winter, lazy with excuses not to exercise and at least one week off work with flu. 

After writing this blog the winter doesn't seem so bad or scary as I thought, you just have to prepare for it.

My wonderful Daughters

After being married/divorced twice and in effect having lived with a different woman every decade of my life. To say my life is complicated would be an under statement.

In total I have 5 daughters and 2 sons who I have direct long term involvement in, everyone of them I treat as my own, only because it is one of my principles of life, however Morgan & Grace are & will always be the Center of my world not because they are mine by blood but because I fully understand emotionally & legally my condition has biggest effect on them.

Morgan takes very little interest in my condition and in fact once asked me to cover my scar before swimming (which I did) I just think she blocks out what should have or could happen, I am healthy & my condition on face of it doesn't effect my life to extent she sees it, I have never actually lived with Morgan so I suppose all she has ever seen is my absolute joy & love of being with her, I will never try to dispel her belief my life is easy or straight forward to her,

Grace is different she spends all her English half terms with me in Scotland with Lorna, & Kyle now along with more and more of her summers. She talks openly about "Barry my device" and how she used to listen to my old wild heart rhythms, she wants to see & meet the people within NHS Scotland I say are so great. She has always asked me questions on my condition & treatment.

If you have read my blogs before you will realise how I feel my heart condition changed my life in a positive way despite the obvious drawbacks but the elephant in the room is and always will be they think my condition may be heredity.

As Lorna too has condition only 2 of my children from 2nd marriage are not tested regularly. Every time one is tested the deep fears come over us. It is easy to enjoy our life's because we understand how lucky we are to wake everyday so make most of it but easily our biggest fear is for our children not us.

There was absolutely no history of heart failure or sudden death in either of my or Lorna's families yet both my brothers got irregular heart rates at same age as me but due to testing unlike me no sign of dilated cardiomyopathy, their children are now regularly tested.

You would think the fact our families are tested so regularly & the advances in heart care is so great now would help ease our biggest fear but it doesn't.

So my condition has made me love & think of Morgan & Grace differently to my other children & so much more than if I didn't have heart failure, I fought to return to work to ensure financially they are forever ok, I push my physical boundaries like End2End so they have happy memorable memories of me. I plan my whole life around them so they only see the good aspects of my condition although Grace is seeing the bad bits more & more now which I absolutely hate.

When I was 1st diagnosed the thinking was woman with DCM should not have children but like so many taboos since then this has now been softened. My biggest regret of my condition is even once I am gone my DCM will haunt my daughters for ever even through their children.

So our heart failure is not just about myself & Lorna enjoying life it is now part of our families future forever & we just hope that is all it is. Hopefully we have given our children a vision of how to enjoy life without them or future generations actually really experiencing why we live the way we do.