So as its organ donation awareness week next week, I wanted to do something.
I will be cycling (indoor at the gym) the distance from my home in Sussex to Kings in London, I think its 56 miles, I shall be doing it over the 7 days as I wanted to complete it myself and thought it would be a bit much in one day for me to cope with at the moment.
I will try and keep a daily log of how I'm getting on as well as talk about my condition. I have an interview with BBC south east tomorrow morning, and am trying to get the message about organ donation spread as far and wide as possible. Thanks for family round the world its getting around.
If any one on here feels like sharing, the first post is listed below.
Yes it's this week, I found about the right distance, I'm never going to set any records, it's taking me about 25 mins, which is just enough to feel I have achieved something.
I'm trying to do a video each day, but hate being on camera, o think I just need a prompt sheet to help me keep on track.
It feels so great to be able to give something back.
That's great Gareth.
When I became really poorly last year, I discussed excersise with my consultant, with a view to getting fit for the assessment and subsequent transplant, he advised me that an exercise bike would help (the reclining type because of my Ascites). They've not too expensive so I bought one and I always aimed to do 10k spread over each day (although more often than not I couldn't as I was too ill).
Now, 8 months post transplant, I still use it and I'm convinced that it helped me to prepare for the assessment and the transplant itself.
Well done and good luck. Please let us know how you get on.
Day two, so this time I had 11km to do after work so, took on board as much good stuff through the day so I didn't crash and burn, it went okay, I'm not out for records here so a leisurely pace, still gets the heart rate up a bit, took just over 28mins which was enough for me.
I made some notes before my video and made a list of questions, the kind of ones that people don't really ask, like does it hurt and do I worry, still can't stand seeing myself on video but getting loads of views and likes.
Tomorrow have local newspaper coming for pictures so another busy day, trying to squeeze it around work, I will be glad of a few nights rest next week.
I will endeavour to put the videos up on YouTube, but for the moment they are on my Facebook page if anyone is interested, just search for Gareth Jones, lives in Brighton, Sussex, mine is the page covered in organ donation stuff!!
Currently up to 33 km, had a really busy day yesterday, too much going on, had photo shoot with local newspaper, and let this get in the way of some down time, so was feeling it by the evening. I have been doing a video log of the week, last night I spoke about how important fitness had been to my current condition, I read about so many people who get caught in the spiral where they feel they can't exercise and once you enter that phase its oh so difficult to come back out and break that cycle, you don't have to go to a gym, just do some basic stuff at home or where ever you are, I know that I am so lucky being able to do what I can do, but its hard for me, and its taken persistent hard work.
One of the wake up calls for me was seeing my external muscle loss and then being reminded that the heart is a muscle and the lungs are driven by a muscle, that was enough to get me moving, you don't have to go out and run a marathon, small steps and work form there, I guarantee you will feel better for it and it will put you in a better position medically.
No one can make you do this, it comes from inside, the strength will help you both physically and mentally.
So its the weekend, still another two days, it has certainly taken its toll, I was tired this morning and haven't seen enough of my wife this week, but I will make up for that. I really don't enjoy the spotlight, but in this situation it is worth it. It is difficult to know how many people I have reached out to and the difference I have made, but I've had lots of conversations and had feedback from friends and colleagues to the same degree.
I have decided to create my own facebook page to log my transplant journey;
Well yesterday my body had decided enough was enough, it's been a long week and after 5.5 days at work and the cycle and sorting out videos and interviews I was done in, so I needed to step back and recharge, I will be back to it today. I was disappointed but my health has to come first and it would have been foolish to have tried to push on yesterday.
It's a beautiful sunny day here in Sussex and I can't wait to get back to it 🚴😃
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