Contacts or friends?

I met up with my GP Dr Spence this week. That seems a very laid back description for a doctors appointment but the appointment went like this. 

"hi Dr Spence I needed to see you as other doctors are again understandably playing funny buggers with my drugs"

Quickly I am prescribed said drugs & given a new one to try. To explain how strangely easy this was when I put prescription into chemist the girl got the pharmacist who said "oh I need to call doctors".

I am not addicted to these apparently highly addictive & restricted drugs. I have shown in 8 years that I use them to live my life in a way I choose.

Dr Spence knows this because he has been there since the start and Lorna says to him "some fellow patients will say John can't be that bad but they don't see the state of him in mornings. going into gym or when he comes home" I actually think Lorna is much braver & has more to overcome than me but I suppose that explains how our relationship is so good for each other.

The rest of my half hour appointment covers my life & Lorna's. He again asks is retirement an option soon as he always does because he has seen the struggle to balance a full time job with heart condition, he worries about how I would Cope without it's focus, he thinks Lorna's work/cause to show how to feed families well & cheaply is such a worthwhile cause. We all chat about the power of mind over use of drugs with chronic conditions, finally it transpires we are both coaches to our boys 2005's teams so a game is arranged & exchange of phone numbers. he offers the surgery support for our teams race night on the 30th and any future sponsorship please ask. Remember this is the surgery that paid £1200 for my End2End accommodation.

For that race night on 30th Lorna & I contacted some politicians we have met including George Adams (Paisley SNP MSP)  & Ian Duncan (Scottish Tory MEP) quickly their support is given & generous with offers of anytime. These communications are through personal contact lines straight to them. The speed & warmth of support given is noticeable & 1st time we have asked as John & Lorna with no charity link.

I got a tweet from John Walsh this week containing a news report concerning 2 nurses I admire Heather Henry & Louise Brady. I have followed these 3 for couple of years now & went to a 2 hour Conferance in Manchester last October basically just to actually meet them. 

Lorna explains to people that if someone ask me to support them & I want to, I will move heaven & earth to be there, no event or support is too small if people think We can help we will get there no matter the difficulties. So John, Louise & Heather don't disappoint as I like & admire them more now have met them personally, I admire their vision for patients, I also think they could open up a whole lot of good insights & contacts to interest my & Lorna's future hope to support fellow patients & others. 

John offers to do a joint blog but It scares me as his blogs are so well written & I love them but I know I could learn so much from him. His blogs highlight a man of genuine warmth and experience in supporting people & causes. I absolutely know he is somebody we should meet up with consistently but I think he is too busy for us.

Louise has mentioned coming to Glasgow & visit us/meet up and I panic, Surely she is too busy to fit us in? we don't want to waste her time, I admire her & Heather's nursing/Patient vision so I want to support them ongoing any way we can as chronic heart condition patients but I also know they can maybe help us in future & they would help but I just don't know how yet. 

Julie Rees has a commitment to charity CardiomyopathyUK that is so admirable. during my John O'Groats to Lands end she supplied a meeting that was simply brillaint, we are driving to her afternoon tea in Feb in Chester to show our support, A long way for a 2 hour coffee morning but my instinct is she & her daughter Jenny can be a huge positive influence on our future goals. I just don't know when or how yet. She asked so we will do everything to get there. 

I only write about those above because they have been actively involved in my planning and interactions this week.

To this list I could add many like both Rob's, Graham, Judith, Harvey, Mark, Gareth, Nick along with many more that I know can help shape our future vision of supporting fellow patients or more & more the plight & horror of homelessness along with our hobbies of cooking skills or football coaching. I truly am shocked at the quality of people who offer to support us so we need to make sure we don't waste it. 

The truth is we are both genuinely shy & yes many will say surely not but in every physchological test I have taken it comes out as my no.1 trait. But we have a real burning desire to highlight that living with a chronic heart condition can be a worthwhile & a reasonable good life. We are a good heart story after falling in love as patients of rare condition. We work as a team pushing ourself on and as All of above have spoke to me about in past we all need to get  "out of our comfort zone" in life. I find the people for us to help, Lorna arranges it then the warmth & support we recieve if we ask has surprised us. We have found so many that could help us in future but we haven't learned, worked out or understood how they will yet.

I explained to Dr Spence that the above people mentioned are why I no longer fear retirement as I will always have a reason to get up in morning giving me focus & drive. We just need to learn what it is we want & to Ask more.

All of above we firstly met through social media, in professional or charity capacities but they hopefully can become real friends who ask for & give support not because they have too but like we do with them, that they enjoy it. That is what is important 

2016 A year of Positivity

I have explained before how I see new year as "out with the old, in with the new", I don't think I have ever set myself new year resolutions because I do believe they just don't work so what does 2016 have in store for me with goals to match my principles of enjoying life with those I love & enjoy being with most.

I decided to use January as a month to formulate at least 5 targets for 2016 with majority away from physical achievements which probably dominated my previous years. I think most days about my hopes and choices that must involve Lorna along with #GangAwesome (Kyle & Grace), my brothers and especially nephew Jordan, my dad of course, my daughters Morgan, Ally Bally (Alexandra), Grace & Paula along with my involvement in heart charities & NHS causes.

The above are only some of the shortlisted possibles but I think I have decided on my 5 although by the time I publish this I bet I have changed it so many times. They are in no preference they are only my 5 most important to me targets/goals I have set myself & judge my year by at the end of it.

I will spend quality time away with all my daughters individually in city beaks or events at least once. Quite an easy one to set but if I can say at end of year I went to Auschwitz with Morgan, Florence with Ally Bally along with something with Grace & then Paula it will be the 1st time I could say this. What a goal to achieve.

Lorna bought me an Apple Watch to celebrate a good year and this opens up a whole set of goal setting apps that currently include these with my soulmate. 1 movie at cinema a month, 2 meals out a month & a few others that I can track now on Apple Watch. It may seem a strange way but at end of year I can clearly see if I have showered Lorna with the consistent time she deserves. Hopefully as January goes on I will have at least 5 things I promise to do with Lorna consistently.

My 16 year old nephew Jordan has started coaching with me & my 2005's and I already have him doing his 1st coaching award paid for by club so once he gets to my level I want to complete level 1.3 in young footballers and reach 1.2 in teenagers together with Jordan. I actually failed to do my goal of level 1.3 in 2015 so how better to turbo on with my brilliant nephew & spending such quality time watching him grow into such a nice young man would be more special than the actual awards. Spending time with Jordan has also had a very positive impact on Kyle both in terms of football and personally. He looks up to him and both Lorna and I are happy to have him look up to such a lovely young man! 

In August I will swim 3 miles in under 2 hours in loch Lomond in great Scottish swim. Well I just had to have a physical target that does worry me. So along with my best friend Phil & fellow patient & inspiration Sarah Jayne already committed it should be good. 

My charity work is a hard one because I am so busy I honestly can't consistently devote time to it so I have set my goal this year to follow up on those I met last year, build on those initial introductions to help where I can so Heather Henry, Loiuse Brady, John Walsh, Gareth Presch, Julie Rees, Tania Hyde, Claire, Rob Merchant, Daniel, Andrea & Oliver Kelly, Caroline, Rob Brown, David Shaw, Donna Cook, Gail Pitman, Judith,  let's see if at end of year I can say I didn't let your awesome positivity fall through my fingers this year & we met again & again. I suspect I have missed a couple out here but can simply add as January goes on for final list.

5 main goals that hopefully through year I can blog about how they progressed, they are all achievable but require good planning & commitment and if I do them it maybe could be my best year yet. Of course my health may impact on progress, who knows how I will feel tomorrow, next week or next month but that shouldn't  stop me reaching for the stars. #GangAwesome assemble & lets do this! 

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