It's a 2 way street! By Lorna

It's very easy to become friends with John. He's a confident bubbly character with a zest for life and a genuine interest in people. He also has a unique sort of honesty that is usually hard to find! And the same daft sense of humour that i do! And you ladies may also have noticed he's a bit of a charmer too! He's not slow to deliver compliments although they are sincere and heartfelt. 

I could say these are the reasons I fell for him but the truth is 'we fit together'. Something clicked and it was like meeting the person who should've been by my side forever! 

In the years that John and I have been together he has given me self confidence and belief in myself in all aspects of my life. I hate to admit that I was slightly downtrodden when we met. Battered and bruised by life and struggling to find my place in the world. A relatively young mum with 3 kids one of which was still a toddler, a fairly recent diagnosis of dcm and heart failure. I think I felt like I was written off by life and I had no one telling me I was still 'viable'. 

John encouraged me to go for a promotion at work, he became a sounding board when I had obstacles, he encouraged me to make my own decisions rather than just tell me what I should do and he did it all whilst making me laugh and feel treasured. For the first time in my life at the age of 34 he told me i 'looked pretty'. 

So when John talks to people and posts blogs and says that I support him and people say 'oh John your so lucky' they simply don't know the other side of 'our story'. That I consider myself 'blessed' to have this man come into my life, enhance my life and love me unconditionally. 

So thank you my Batman and never forget that I love you John xxx 

Getting ready by Dan

With only a few days to go I've been busy gathering together everything I think I need for the trip. I've searched the web for 'cycle support driver' just to see what's required and expected. No results I found were any help.

I've been in constant contact with Lorna throwing ideas back and forth over messenger, it's fair to say we're getting excited. Lorna is doing a sterling job organising  all the accommodation along the way...and we are staying in some fab places and different types of accommodation. John jokes that were turning it into a holiday, hehe. 

I am personally very much looking forward to the Scottish leg of the trip as its somewhere I've wanted to tour. I've taken a pic of some of the essentials I think I need...can you spot my spork and midge head net?

First encounter by Lorna

My first encounter with John was around 7 1/2 years ago when I got an email from a crazy dcm patient saying he was doing the London triathlon and needed me to put him in touch with a few people! 

After speaking to him at length i stopped thinking of him as crazy and instead thought of him as strong, stubborn, determined and courageous! I listened to his story and I believed him when he said he could do it. And in hindsight that is sometimes all that someone needs is someone to believe in them. 

We met up for lunch at a place with a kids play park as I had my little one with me and John turned up with 5 kids aged from 5 to 10. He had his own 2 girls and his brothers 3 kids all up from England for 2 weeks! I did think wow maybe he is crazy 😂 but he came across as laid back, confident, funny and most importantly level headed! 

A couple of weeks later, on the day of the triathlon I was a nervous wreck. What if he was crazy! What if he didn't make it? What if he collapsed in front of his kids? I've never been so relieved to hear a voice at the end of phone in my entire life as I was later that day when he called to say he was done. Phew! 😊 from that moment on I have never doubted John. 

He knows what he is capable of and I trust him explicitly. I also know that he loves his daughters and me so much that he wouldn't take any risks with his health.

Over the years I've defended him across various internet mediums and platforms from other patients, healthcare providers and even members of the public who either say he's reckless, stupid or obviously not that 'bad' health wise.

And I've also supported him over those years through various triathlons, a 10K and now John O'Groats to Lands End and I do so proudly and confidently because I trust him now as I did then! 

Lorna

As i look back on the last 8 years I cannot help but feel thankful and at times down right lucky to have met so many wonderful people, some have been so supportive without realising it, my medical care has without doubt been looked after by some wonderful capable people, fellow paients inspire me more than they will ever know but without doubt one person has made this journey the awesome one it has been.

I met my fellow patient lorna through CardiomyopathyUk and throughout the last 8 years as we have gone from fellow patients to freinds to finally living together it has been full of basically enjoying life.

i could list so many but my favourite is touring Scotland, we have covered all 4 points of our beautiful country together  we both have had times off work due to our condition, we both have the fatifue and mood swings attached to heart failure but together we understand it and found so much fun within it which i know is not the case with some family or partners.we are indeed a heart failure team

Through every scarey moment of my journey be it can i continueing working, is an AV Node ablation best idea or just basically to be honest with someone about the fears and doubts we heart patients get  lorna has been there and without her belief in me and honesty on when i am being a drama queen none of this would be possible .

i am lucky as a patient that i have a fellow patient to put up with my moods and believe in my dreams without basically questioning it as she shares my desire to get the most from this extra life we are being given.

Funny enough Lorna edits all my blogs due to my dyslexia so hopefully she will add a bit to bottom of this because this dream of End2End is as always a team effort between us both and not possible without her and this blog is to say thank you and love you.

What an amazing Journey

One week to go & the doubts have set in. Could I have done more training, am I being stupid, what if I can't do this? 

I have described before in my blogs how heart failure effects your confidence, how your fears are exaggerated and how negativity can become your mood of choice as you fight the constant symptoms that in realty never leave you, we only learn to live with them better.

Lorna had an interesting chat with my dad the other night when they were at Thistle game as I worked and my Dad described to Lorna that all my life if I wanted something I would focus totally to get it, nobody could change my mind & basically I listened to nobody once my mind was made up. (EDIT- Lorna here - what he actually said was 'he'll do what he wants no matter what anyone says! He's a stubborn b#^*$~d! 😂) 

So the dream is to cycle John O'Groats to lands End, what a stupid dream for a heart failure patient, did I think this through? Clearly not as all my planning would need to be done in only 4 weeks once I felt I could do it. I can't train for something if every session can feel like the 1st one no matter how fit I am, how would I pay for it?

8 years ago I entered a doctors surgery in Maryhill to meet my mums doctor to see if I could register as patient. From that 1st meeting he became a central figure in my journey. He didn't question my plan to exercise my way to health, he explained I was relatively young & just had had a life altering experience, I would question everything in my life.

I asked him about the depression like symptoms & could I have tablets? He explained I should look at what made me happy, it was the only tablets he has ever refused me.

I explained how returning to work & staying in work full time was a central goal I need but so many times over the last 8 years he has asked if now was the time to consider retiring as he saw me at times struggle both physically and psychologically but every time I have said No & he supported me every time & not so much with tablets but simply talking about me, my family & how well I had done. 

I don't see him much now as he is so busy and at times my appointments are with various doctors who all question my drugs on 1st meeting "we don't like to prescribe them" is initial reaction but I get them as clearly I manage my condition well if they simply looked at records & majority say Dr Spence has spoken about me but none of them have that special thing Dr Spence has that all brilliant doctors should have in that I leave his surgery always feeling better with bounce in my step. I think I seek his approval in all my plans.

So over 8 years this surgery has grown into the huge Barclay Medical Practice covering most of North Glasgow, 

On Monday at routine drug appointment the Dr asked was I still excercising & I explained my End2End she said well done & would tell Dr Spence at surgery meeting in morning. I thought nothing more of it

The next day Kim the practice manager called, what did I need? After my initial shock We agreed on branded clothing for the team and a cycling rain Jacket for me, then today Friday we agreed to meet about this adventure.

During this meeting she explained the surgery was all about life/work balance, about making things happen for patients in treatments not offered elsewhere & run like a business because by growing it could help more, all business look at opportunities to support good causes so did I need anything else?.

Both Lorna and I were blown away when she offered £1000 to cover our accommodation and expenses on top of buying team clothing (£200). We were totally speechless! 

I almost cried because here were people at Center of my journey willing to back me, trusting me & believing in me.

Why? Because 8 years ago I trusted a doctor enough to be truthful with him & I trusted what he told me, together we showed heart failure can be more about mind than physical restrictions, we showed what a good doctor/patient relationship can be with mutual trust & respect.

This is the biggest contribution I could have dreamed of but not alone in it's sentiment. Since announcing this challenge I have seen many come forward from my last 8 years to offer support. It is amazing if honest.

8 years ago I walked into a doctors surgery with a challenge and we did it, today I left the same health Center with a challenge and they once again sent me on my way believing it is possible. I still have my doubts but much less.

Rob Merchant - why have I put my wild dreams in the attic?

On a day when my End2End became a more realistic dream (more of later) I was reflecting on this momentous day when I read Rob Merchants latest message to me and again he has captured so much of why I want to do this challenge. I have had a day of real highs but also many doubts but this dream is starting to become reality

Rob Merchant - whyhave I put my wild dreams in the attic?

"Another thing that comes to mind in this discussion about 'living' with heart failure is the unexpected changes that can be experienced because of it. Some examples of change can be: diet, exercise, work habits and getting used to the new world of medications.

But there are other, more subtle changes. One is the way we view, respond and react to the life we live. We could, for example, hide away and become very reclusive. Due to the sometimes debilitating nature of heart failure, this choice is occasionally forced upon some of us.

With me, this 'change of view' is my response to a particular challenge I think about most days. It became clear after a conversation I had with my cardiologist a couple of years ago. We've known each other for twenty years now and - true 'Brit' that he is - he can now finally address me as Rob...! As a consequence of this confidence, I cut to the chase and asked him: 'OK then Doc - how will it probably end for me...?' His response was instantly forthcoming: 'Either a slow decline, or a heart attack or sudden cardiac death (the dreaded SCD!)'

There I had it. Plain and simple. It was the last of the three, however, that completely occupied my mind for weeks afterwards. But gradually the threat of SCD coalesced, changed, into something very powerful: 'If there is a chance that the end could come 'like a thief in the night' then what the hell am I doing repressing my feelings, words and actions? Why am I 'behaving well' to fit in all the time? Why have I put my wild dreams in the attic?

John talks about End2End as one of his dreams. He is the living example of 'being the change'. His cycle marathon is a rallying call to all of us - heart failure-types or no - who have folded our hopes and dreams away for a rainy day that may never come...

He thus deserves our support in any way we can express it."

Our positive second chance! We simply get to see

A message from Dan who has volunteered to drive my support vehicle as I do my End2End. 

The other day John posted on his Facebook about a conversation he had with one of his daughters, and he went on to say that he simply loves being here to see his family living their lives, especially his daughters. He loves life and watching his family and friends grow is very important to him...it's the reason he takes so many selfies...he simply loves the fact that he can. And that smile is genuine in every single one. 

So when John asked me to write a small piece about living with heart failure I decided to go with this theme and pick the most positive thing to come out of me having heart failure. 

Before I had heart failure I used to work 6 days a week as an electrical/facility's maintenance engineer. On the Sunday I would rest and quite selfishly play video games and lounge about, my kids at this time were still quite young, one 6 and the other still a baby. Two boys. I didn't  take the eldest to the park, or swimming or play games with him. Their growing up was passing me by. I was missing out. Loving them was not in question. I just wasn't involved! I had this odd idea in my head that I would do all the dad stuff when they were older.

So now I have heart failure, lots of the dad stuff I was planning I can't do. Like simply having a kick about with a football.

However, I now devote all my time to them, I get to do the school run, I get to watch sports day, I get to see school plays and go into class on special days to join in with lessons. When the weather allows we spend all day on the park with a handful of their friends. And I watch them both play and train for their football team. I have a great relationship with them and get to do lots of things dads miss out on. 

I didn't see my boys very often when I was in hospital, as it upset me when they came in, but I missed them terribly. I made a promise that I would put them first, and I was lucky enough to be given that chance. Watching them grow and become educated and grow into their individual personalities is amazing and as John put it, whats more amazing is I simply get to see it! Daniel 

Living with heart failure: now there's a thought...!

Once on my End2End I will have a lot of time on my hands resting between stages & one of the fellow patients who will offer support online will be Rob who has knack of sending lovely motivating quotes, poems or simple messages to raise my spirits so I have asked him to do a piece on living with heart failure, once again he has not disappointed. Thank you Rob

Living with heart failure: now there's a thought...! Rob Merchant 

I guess for a lot of people the words 'heart failure' don't exactly amount to 'living'. More like the opposite, if the truth be known. For example, I just received my new ICD 'ID card' and if you read the list of cardiac conditions I have to qualify for such a device, then you might think: 'How does this guy actually make it out of his front door in the mornings?' (For those not in the know a pacemaker / ICD is your best electronic friend. The ultimate app...)

So, failing is not what it's all about. Yes, your heart is not getting the best grades in its 'Highers' but it's still doing its stuff. With a little help from randomly brilliant cardiologists, medical professionals, assorted amazing friends and colleagues, plus a dash of stunningly supportive family members - yes, your 'failing' heart can achieve many miracles.

Unbeknown to me, I've had heart failure all my life. Two major surgeries and one magic implant later and I'm getting used to it. But enlighten me here: is what follows 'failing'...? Now I bask in the company of others; I no longer compete verbally with them, but love to hear all their stories, struggles and dreams. If I see someone do a good thing or just be awesome in some way, I tell them. I appreciate and acknowledge so much that is offered to me by others. And all around I see the signs and evidence of joy. Not euphoric, over-the-top raving, but simple, humble delight in living.

Now about this guy John. Hereby hangs a tale... Look at this guy and what do we see? Well, he's a combination of a few things: a father, a partner, a manger, a supporter, a relater, a provider of humour and solace. And then beyond all this, he chooses to be a warrior and stand in the way of all that his own stack of heart conditions can throw at him. 

He rides that bike of his every day. He faces down his fears every day. He will ride from end to end of our nation just for us, all of us, whatever our condition or situation. When he begins this incredible journey he will ride out of suffering and into legend. But if asked the question 'why' he will mostly likely say 'to give courage to others - and for Scotland and all that she represents...'

He will do this for you and me. He will do it because he knows he has the strength and grit to do this.

This is not heart failure. This is living

Frequently asked questions

I have been really touched by the support I have received since I announced i was doing my End2End. 

Already I have had offers to ride it with me, offers of Accomodation and simple requests to meet rolling in and of course Lorna will sort it all out for me & I really couldn't achieve this without her.

So here is a quick blog on sort of questions am being asked.

Who is doing it with you?  I am presently the only one cycling the whole route but people are committing to doing parts with me & I have Dan my fellow patient being my support driver along with Lorna & Kyle who is only 9 but desperate to cycle parts of the route with me. Of course we will need to assess each part of the route for safety. 

How many miles is it? 950 is current estimate which will currently take 15 days with daily cycles of between 50 & 80 miles 

Why are you doing it.? Because 8 years ago I was told what was then the perceived "facts" about how a heart failure patient would live their life. I have done my best over the last 8 years to show how heart failure has to be respected but not the major struggle it once was as medical science advances, I also get my device changed next year so it has to be now. Raising awareness of heart failure is something I really believe in.

What is your heart condition? I have what is called Dilated cardiomyopathy which is an enlarged heart, my family has no history of heart problems so was very unexpected, I also have severe atrial fibulation which is a irregular heartbeat although I still have it, as explain next it no longer affects me day to day, and finally when diagnosed I had blood clot in my heart so am high risk for blood clots now so take tablets to thin my blood.

What is your device? I have what is annoying still called a pacemaker but in realty is way beyond that simple description. I have a Crt-P (cardiac Resynchronisation therapy - Pacemaker) that keeps my still heart rate at a steady 70 beats per minute & then during activities will go up in sets of 5 beats to a maximum of 130 BPM  and return to 70 when again still, I had what is called my AV Node ablated so my electric pulses in heart is disconnected permanently so device totally controls my heart now & always will.

How can I support you?  Accommodation is biggest thing and already getting offers, meet me on route would be brilliant with maybe some local press, like my Facebook page and look at my go fund me page. Basically please get in touch like many have is amazing how kind people have been.

http://www.gofundme.com/dkgxkc6s

http://www.facebook.com/johnscycle950

Are you mad? Probably but we only get one life so am just busy living it.

Thanks again

Assured spontaneity

I am 48 years old in October yet the last 8 years since being told that my life could & probably should have ended instantly mainly because of blood clot in heart has been probably the most consistly happy of a happy life.

I have explained before about how deaths like Yasmina's can hit you like a brick & never leave you then get you to reflect on what you are doing with your life, don't waste it is the constant message I tell myself. but being told after 40 years of excellent health that your life as you know it is no more is the strangest thing. When I meet fellow heart patients on this journey we will share experiences as we all do and it helps to know you are not the only one. It is not always negative I find many are funny but always the shock forms part of it.

I forget how my body felt pre diagnosis. I have forgotten what it feels like to sleep consistently through the night. I have forgotten what it is like to not wake with headache or to sit in meetings at work and not absolutely lose concentration. This is mine & Lorna's life now. We have just learned how to manage our life to accommodate the symptoms & the hilarious 1st question of day of "how you feeling" to each other is followed by a rundown of the checklist of symptoms.

The biggest thing is it makes me more emotional, I tell everybody I love them if I do, I hug everybody I want to and I don't care. I tell everybody what they mean to me like Kay, Jean, Rob, Sam, Tania or Caroline this week and it nearly always makes me tear up.

So when I see donations to my Gofundme http://www.gofundme.com/dkgxkc6s I genuinely am overwhelmed with emotion, when I see another 100 names just this week on my Facebook page www.facebook.com/johnscycle950 I want to thank them all. So please ask to meet me on route like Tracy, Sarah Jayne & Liana have because I will love to meet you for a selfie.

So when I am asked why am I doing this  it isn't an assured spontaneity idea like most of my decisions, it is I know what make me happy and for 8 years my life has been building towards this and please believe me I love everyone of you for reading this and your messages will make me tear up but I don't care because I am just happy I woke this morning to write this and many of you fellow patients understand that.

Thank you

What a week

With only 3 weeks to go the plans for my End2End are coming together so quickly.

My route is set out and already having welcome requests to meet up on route, this means detours but I know they will break up the days so will try to accommodate as much as possible so please ask.

I was asked if this was my selfish goal or about awareness and now I know I can say it is about awareness, it is about meeting other heart failure patients, Politicains etc and showing what a positive patient to patient support network does.

The offers of support are starting to role in, Nick & Sam at Pumping Marvellous as always bring truthful honest views & support about how to manage this adventure, Robert Hall reminds me of the start of my journey and I know I have his welcome support, Garsth Presch, Julie Rees, are starting to become more important with their input. 

My cousin Jacquie & Caroline at work have been so good this week they deserve a mention tonight.

As always without Lorna nothing would get done but this week my fellow patient Dan has committed to being my support driver. So my team for whole journey is those 2, 15 days together from one end to the other, without those 2 I know this would not be possible.

I now need to work out how I thank those at work, charity support groups, friends and so many more who message me with offers of support, The hardest part of this is I know I will miss some out and that is something I am most scared of.

Thank you all for liking my page and spreading awareness. As I said in previous blog this is about more than me it is about a positive heart failure community proving we can lead positive lifes 

Basically now I just have to prepare for 15 days sit on a bike, meet people and sleep. Easy 

SCOTTISH LEG

Here is the proposed Scotttish leg of my End2End.

My wish is to meet as many heart patients as possible, maybe some Tesco stores especially in Cornwall at end of journey where I worked in many and of course to keep costs down any offers of accommodation welcome for 4 us.

I am so look forward to meeting up at work to thank the many staff like those pictured who are so supportive of myself & Pumping Marvellous..

So many asking why have I left it so late with only 3 weeks to go but please take into consideration that I do have a heart condition and this is how my life works now. This route was set a year ago so although new to you this is not new to me but only now do I feel confident enough to say I will do it.

Day 1 Friday 4th - John O'Groats to Golspie ( following A836 to Wick & A9 to Golspie) total miles 68

Day 2  Sat 5th - Golspie to Fort Augustus (following A9 to Invernessh only then A82 to Fort Augustus) total miles 85

Day 3.  Sun 6th - Fort Augustus to Crianlarich (following A82 to Fort William then A82 to Crianlarich) total miles 82

Day 4  Monday 7th - Crianlarich Glasgow (following A82 to Dumbarton & inconto Glasgow) total miles 57

Day 5  Tuesday 8th   Glasgow including Tesco Rutherglen 

Day 6 weds 9th  (following A71 to Kilmarnock then A76 to Dumfries) total miles 91

No turning back

Since I was diagnosed with DCM, AF & a blood clot 8 years ago I have probably set my highest ever challenges. I have challenged my self to ensure everyone close to me knows how much I love them, I have challenged myself to ensure that I don't waste this privileged gift of extra life taken away from so many and was reminded yesterday that this Weds is 4 years since Young Yasmina died. The physical challenges I set myself are easy compared to the challenge of making sure I don't waste this extra gift of life.

It is testimony to advances in our heart failure care that I can count the number of deaths Lorna & I have encountered due to Cardiomyopathy and it is relatively small. Which somehow makes it more shocking when we hear of such a loss. 

The 1st was a lady in Aberdeen who had a young family who initially survived and went about setting up a support group for CardiomyopathyUk, this happened very early in my journey then I saw she had died suddenly leaving that very young family behind, it is hard to explain this impact on me with even now it bringing me close to tears. From then I made completing the London triathlon my challenge and of course I did it 8 months after diagnosis. 

The 2nd was Yasmina, a young lady in her early 20's who again was taken suddenly after a lifetime of fighting but living a full life, I so remember Lorna calling me while I was at work and being hit with the thunderbolt and the feelings it brought on. I think a lot of my feelings are based on guilt that am I doing enough to justify this extra life I was given.

The thing about the above 2 is I never met them yet they touch my life in a way that is hard to explain to those not living with a chronic illness. Why do I get to live when others don't but let's not kid our selfs we could be next.

Both of the above stories make me cry but determined this morning, they drive Lorna & I to do our best with this life. If I was to pass away now I would have no regrets but I would if I didn't make my John o'Groat to Lands end attempt this year because I know I can do this. The messages of support on social media are so emotional to me, very few are negative now which is very different to my London triathlon challenge.

So it's all out there now and no turning back, my Gofundme page is set up and I have started to post on charity forums. Do I feel pressure? Yes I do but only to the memories of those dead or alive not as lucky as me. I hope this challenge brings about so much awareness of those positively living with heart failure and is not only about me.

 

  

4 week countdown

With 4 weeks to go until my John O,Groats to Lands End cycle (End2End) time to reflect on where I am.

In terms of training i now cycle 6 out of 7 days averaging 15miles a day with my longest ride so far being  60 miles. so basically I just need to increase this over next 4 weeks by basically cycling to and from work then on my day off do an 80 plus.

So my biggest job now is the logistics of route and possible Sponsorship.

I would like my route to include meeting as many of my fellow heart patients as possible so will need to post on as many forums as possible including any local press they would like involved but in reality my route will be flexable probably right off to i set off and am comfortable with that.

My biggest and probably hardest task in such a small time will be to find a sponsor someone, some group or business that would be willing to back me on this adventure. i dont have an amount in mind as anything would help outside my fundraising towards hotels and support car costs. hopefully as plan  comes together i can offer some local press etc.

There is no way i could have planned any of this earlier due to my heart condition and clearly the final decision to go ahead has only really been taken in last few weeks some may question this considering i started a year ago but i would have hated to have done all this planning only to pull out and lets not forget i am currently having tests with my cqardiologist after no appointments needed in 3 years but to me that only highlights the need to do this now.

Accomodation again i will need to leave until as late as possible depending on factors like how far will i cycle daily but already i have had a few offers of accomodation but i think there will be at least 4 of us so hopefully some fellow patients etc will come up with offers and ideas once i start to push my End2End with my chosen charities.

i have had offers to ride parts with me from family, freinds and even politicains so will need to start asking people to commit. if interested please let me know

Lots to do and consider and no doubt Lorna will again be the key to this as my blog on her states but my excitement is growing that i can achieve this.

thanks for reading

Why I want to raise for Olivier

What Oliver means to me

I have always wanted to cycle an End to End but like everything something needs to happen to spark me into doing something so this time it was pumping marvellous who rekindled the idea, then my best friend Phil said he would do it with me so I got the spark I needed.

So then comes the reason, as a personal ambition I was always going to do this but I accept my heart failure journey raises awareness so much so involving the 2 charities that have been so much part of this journey was a given.

But I needed something more, something that during the hard parts would make me realise how lucky I am to be able to attempt this & something  to start the intense training. It didn’t take me long to find my reason.

I 1st came across Oliver when we were looking for stories for Pumping Marvellous video advent calendar. I had spoken to his mum briefly before so I was aware of his story. His mum Andrea quickly agreed and supplied a video that touched the heart. Since christmas I followed this families story as they overcome issue after issue, andrea sends me videos of Oliver trying to stand or playing with his brother and I see the difference every time as he develops.

So I love the wee mans bravery to keep fighting along with his family looking to the future positively, at times I feel down but I remember Oliver and i know that I am lucky to have lived to see family grow and have holidays and memories with them so would love to raise enough to see what options I can offer this wonderful wee lad and family who inspire me.

Oliver’s story is on my facebook page and I have asked Andrea to post some times to highlight the wee lads fight and continuing fighting spirit

Link to his facepage is

https://www.facebook.com/OliversHypoplasticLeftHeartSyndrome

Thank you for reading

Heart failure charities

Have just completed a 15 mile cycle in 1hr 10 minutes here in Bulgaria so again I feel am going from strength to strength.

With my training for my End2End apparently on track I reflect on what the 2 heart failure charities I want to raise awareness of mean to me and how they have helped me get to this point

8 years ago when 1st diagnosed with dilated cardiomyopathy the Internet was not as sophisticated as it is now and information on DCM was limited in supply and quite negative and I realise now was based on old stats and myths.

CardiomyopathyUK was a charity I found and through them I met Lorna Cooper who also has DCM & lucky for me is now my Partner. Through both I realised so many were now living with cardiomyopathy but little was still known about our futures although drugs and devices were becoming more sophisticated not just for keeping us alive but giving many a good quality of life.

CardiomyopathyUk is a charity when newly diagnosed will give you the most upto date information on Cardiomyopathy but will also introduce you to so many people living with cardiomyopathy willing to share experiences.

But we drifted away after a couple of years after the initial introduction it gave us because it seemed to be excellent in introduction to cardiomyopathy but maybe not on living with it, if honest i came across too many "don'ts" not from the charity itself but from some of the volunteers. 

It has just undertaken in my opinion a much needed revamp and I cannot stress enough it's importance to my, Lorna's and so many others start of journey & how welcoming it's information was at a time a patient can be at their most confused & vulnerable 

Pumping marvellous entered my & Lorna's journey with introduction to it's charismatic CEO Nick, a relatively young charity but his vision of patients to patient support is something we fully endorse, it is heart failure charity looking to show that living a good quality life with heart failure can be possible, it is producing excellent booklets on all areas of living with heart failure. Hopefully Lorna

 & I can continue to push its brillaint message in Scotland. 

Pumping marvellous is all about positivity in an area that is instinctively negative, I have no doubt it can grow & support many others if the message can get out there to many more that is why I chose to share my fundraising with them & Oliver as without pumping marvellous & Nick I doubt I would be undertaking my End2End.

It is ironic that both these charities have been a cornerstone of me having confidence to push barriers, to find motivation in other patients stories yet I feel I do not give enough back to them simply because Lorna & I live such full life's.

Hopefully this John O'Groats to Lands End (End2End) will give both the awareness they both deserve without them I doubt I would be were I am today .

Thanks for reading

Cycling in Bulgaria

We arrived last Thursday and so far I have cycled 16 and then 10 Miles with again no ill effects , I feel strong so today i was looking at +20 miles.

I pop down to get Bike from my usual vendor who greets me like old friend returning or more like pleased to have a daily customer. I pick a bike similar to what I used on 1st day, pay my 12 leva (££4:50) and off I go.

Considering I have only had 1 day off cycling in 7 days I feel strong. I look for signs of my heart failure looking to tell me I am doing too much but nothing appears to be happening however I can't get complacent as that would be the ultimate stupidity considering I am in foreign country who probably have little knowledge of how to deal with somebody like me.

Just over an hour in & out of the main town I stop to turn round as become aware of having no repair kit or knowledge of bike maintaince. I don't fancy walking back as about 10 Miles out of town.

The roads are actually quite good to cycle on, drivers are mostly courteous and the weather really does make cycling enjoyable but then it happens, on a busy downhill section of road I see the burst drain flowing it's sewage across road, I have nowhere to go so have to go through it. God I stink!

Another thing I notice is how many building are unfinished honestly I can't see one estate finshed, next to plush busy hotels or villa estates are building sites with nobody working on them or seem to have for a while.

After 2 hours I have swung back through town and went in other direction to a very picturesque old town. Cycling in Bulgaria is so good & the hot weather really helps. I know I have gone over 20 miles now but still feel so strong and so surprised at no heart failure kick backs. I will never be complacent though as I fully understand the dangers complacently can bring.

27 miles covered in 2 hours 40 minutes So with 4 weeks to go I feel physically so much more confident, this holiday has refreshed me so decision is made when return to Scotland it is time to attempt 80  or more miles, let's hope the weather is as good

Heart failure and weight

This holiday in Bulgaria is actually my 1st real holiday in sun since I was diagnosed and what it has highlighted is at 48 in October I seem to fit into the stereo typical middle aged over weight man in appearance. I have a rather well round stomach and man boobs but where I differ is I actually do a very high amount of physical activity even when here. 2 hours on a bike in soaring heat is a doddle.

So a question that faces all us heart failure patients is does the tablets etc cause our weight issues or do we use it as excuse. I find myself asking this question as weight on a bike will be important on my End2End. Less weight means less pressure on tyres so easier cycle.

If honest I eat well, probably too well, & double what most eat but I eat healthily but maybe just in very large amounts. I drink alcohol in binges but not every week and mostly now spirits or red wine. Yet I can easily weigh 20 stone sometimes & at 5:11ft I am in no doubt my body fat index is off scale & I am obese.

After Diagnosis & I lost the water retention I lost easily 5 stone but slowly since then it has creeped up and was actually surprised at hospital this month they stated 16 and half stone as my weight. I know it had been close to 20 Stone.

So I probably hide behind fact Barry the device at maximum 130bpm  will not allow my heart rate to go into maximum calorie burning rate but since my intensive training of last 6 weeks I have lost weight but not in areas that people look and see big fat middle aged man and that is the thing that as a heart patient that annoys the most. I go to gym and know others see big fat middle aged man not the triathlete. It is annoying but I fight this mind set with at least I am alive to do this fitness & so lucky I can.

My conclusion is my tablets do cause me to look fat while being very fit. I could diet and starve myself but what would be point?, I didn't live not to enjoy life, I love my life but if honest I hate being fat in appearance probably like a lot of heart failure patients who can't do activities I do so stop moaning John just be thankful you can be so active while Fat.

Thanks for reading