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.