Always careful or not

Last Saturday I swam the longest I ever have in both time & distance. I did it in a 50meter pool because turning less at each end means I actually swim more, I don't kick off wall I just tumble turn (my rather cumbersome version of one) again to minimise benefits of swimming in pool

I am an experienced open water swimmer so am very comfortable of using this method to sense check my fitness ahead of my 2 mile swim this Saturday. I find open water swimming enjoyable so holds no fear or surprises for me, my biggest fear is that I hadn't correctly trained or prepared myself for 2 miles .

As a heart failure patient clearly this 2 Mile swim in Loch Lomond is not without it's dangers to me. If I cycle too hard then I can become disoriented but I see it coming so stop, take a drink & energy bar and let it pass so what is option in open water? One thing that won't happen is heart attack type scenario because my device will just keep my heart rate to 130 for whole swim after 1st 10 minutes so my training session last Saturday was more about what happened to my body once I enter the 2nd hour of swimming.

I Have never actually pushed myself so far that the maximum possible impact of black out occurs. I have had times of my heart absolutely telling me to stop, confusion, body shakes, extreme temp changes these are not frightening to me but are to those like Lorna who see me fighting them or no longer able to hide the symptoms but each time they occur I examine how they happened & learn how to avoid. 

So am happy to report that during this swim absolute nothing within my body reacted badly and in fact because of how my device works it settles my body into consistant rhythm. I became stronger as time went on. I came out the pool so confident and positive. 

I can't train for something like other people, tiredness and fatigue are consistant battles that can mean every session at start can be like never trained or exercised for years. When I start my swim on Saturday the 1st 5 to 10 minutes will be hard both physically and mentally but my experience means I will work through it, as I lie here writing this I can feel the strength in my legs and arms so I know I am fit enough even if at times my body says otherwise.

The big question is would I pull out if last Saturday hadn't gone well? I would love to say Yes of course I would as example of managing my condition sensibly & correctly but I take comfort in fact that through all the challenges I undertake the question has genuinely never been on agenda, what has happened is after I maybe under estimated impact post challenge and that is what happened this time.

Saturday I felt top of the world, Sunday I put down to post training swim standard reaction for anybody, legs and arms felt tired, wee bit of sore head but nothing unusual. Monday returned to work after 2 week Holiday so again standard tiredness, fatigue, low mood reaction I felt, but then major warning sign of bad mood swing Monday night and falling into deep sleep at 8pm till 6 next morning in my works uniform after lying on bed. By Tuesday I know something isn't right, mind thoughts are very negative, I feel my body working in a way that I cannot describe, vision is blurry, I have tingling in fingers and concentration levels are all over the place so I know now I haven't handled my post swim care well.

So I have been distant last 3 days and not very nice to Lorna. I can hide and manage it around other people so well now but Lorna gets the full John struggling backlash but the key point is I saw it yesterday afternoon so last night I spent it with her. We went to Saltcoats for her and Grace to go to 2p machines. I made the effort to just be with her and as always it works. I wake this morning feeling stronger and again positive. 

As always she didn't moan but just gently tells me in a jokey way that something isn't right and I realise eventually so face up to it, plenty of sleep, relaxation time, fluid , eat properly and basically make effort with Lorna to laugh and spend time doing things we enjoy, that is how I will manage now my post 2 mile swim Saturday so even after 10 years of living with heart failure I am always needing to be careful and learning. Nothing can be taken for granted with heart failure and the best advice ever is still true today

"Treat your DCM like your invisible friend, never fight it but work with it, treat it well and it will reward you but never forget who is the stronger in this relationship"

Thanks to everybody for support, it honestly means a lot and helps.

Colours & choices

Let me, O let me bathe my soul in colours; let me swallow the sunset and drink the rainbow.” - Kahlil Gibran

“But the Hebrew word, the word timshel—‘Thou mayest’— that gives a choice. It might be the most important word in the world. That says the way is open. That throws it right back on a man. For if ‘Thou mayest’—it is also true that ‘Thou mayest not.” - John Steinbeck, East of Eden 

One of the authors regularly visits hospitals, cardiac centres and GP surgeries for a health issue. His first first diagnosis was in a newish hospital in Cornwall. His time there was relatively easy and comfortable but it was also scary. He knew he had to return home to Glasgow after 22 years living in England to stay with his parents in a home he grew up in because that is where he  felt strongest and could hopefully recover.

All but one of his hospital and doctors appointments are in relatively modern and bright environments or about to be. However he has visited others with other patients that when he looks around he feels very lucky at his own experiences. He does have to attend one appointment centre which is a windowless basement. It is grey and dark. The staff are wonderful but the place depresses him. The waiting even with his beloved partner Lorna is not easy despite not being usually long. He also remembers the contrast with a dull grey X Ray room and the bright modern, warm and colourful Stobhill hospital.

What is it about these different places? It is the colours. Or rather than lack of them. Colours are a real gift. Children paint and draw with them. Adults stop when they see them stretched as a rainbow in the sky. Unfortunately we often make buildings for work not for people. We have a utilitarian mentality that asks what do we need to complete a task. Rather than asking a question children usually know the answer to. That question is  - how do we create offices and structures that connect with the human spirit? How do we make space that liberates and makes us feel good. These 'wellbeing spaces' usually embody colours. Colours matter. The famous image by Banksy of the Girl with the Red Balloon is such a powerful image.A girl with a red balloon and a message scrawled on a wall - There is always Hope. The atmosphere outside the girl is grey and dark and dreary. Sometimes the colours of our life may be dark and grey.We cannot always control the events and influences on our life. We can have choices about  the  colours of our health and care centres. We can ask the people who use them and their families and carers and staff what they want and what would most create centres of welcome and wellbeing. Colours are all about choices.

Choices also govern other parts of our life. The author recently made a huge decision. He  decided  to apply for a job at the local Tesco 7 minutes and 1.5 miles from his house. Why is this decision so big? For one he openly mentioned his heart condition in the interview but that is another blog. The reason is massive is that involves three things. These are clarity, courage and compassion. 

Clarity is about seeing clearly. Clarity as he has seen that he must put his health and wellbeing first. He has to chose a place where he can be well not just work. The old place was where he learnt to live with a heart condition. To see what was next needed for healthy living was what brought clarity. To see aright is to set us for right action. 

This choice to choose a place closer to home and Lorna was about courage as it meant less money. We unfortunately have services and organisations where people believe bandings and pay scales are the be all and end of it. They are sadly mistaken. There are plenty of stories of where people are on large amounts of money but the position is de-souling them. They have lost themselves and are locked in a prison called work. The author had made a tough call to have less in order to gain more. We are not saying everyone should do this. We are saying that putting our wellness first isn't without sacrifices sometimes. It took courage to do the well thing. 

The choice was also about compassion-  self compassion. We often can fail to show kindness and compassion to oneself. We can miss those acts of self care we so need to replenish and grow. It wasn't just about been closer to home but to find a store where he could feel at home. A place where he could live and grow with the team.  Our author made that act of self care. He summed it all by saying, 'So the  decision was made to apply for this job for work life balance, I enjoy my job, I want to work, I want to enjoy it but that will only be possible with clean start not just in any store but one I know I will enjoy. This was planned out by myself and  Lorna we just didn't realise opportunity would arise so soon.'  He has started  at the new store and its going well. 

Dr Jim Simkin the Gestalt therapist spoke of how awareness gives us choices. Without awareness our choices are often either non existent or limited. Awareness is a door leading to possibility. This blog is all about colours and choices. We can  paint rainbows with our choices. We can utter that sacred word 'timshel' - Thou Mayest. There is a desperate need for us to spread colours wherever we can and choose what is good, true and beautiful for our happiness.  Colours and choices can also help spread hope. Hope is a simple word and a beautiful thing. We all need its presence and gentle voice in our days. We can't control many things in life but we do hold in our hands choices which can make life very different for us and our loved ones.

John Kinnaird

John Walsh

 

 

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!