shodaguy feeling great right now

[skodaguy]

I have had MPN for 26 years with a variety of diagnosis. I have had PV followed by CML then now MF. About 2 years ago I had my bike electrified. I have been hiding with pride for most of this pandemic feeling I can only emerge from my home when everyone else has gone home. Tonight I did the Tissington trail up and down in 80 mins. Thats 20 miles with a climb of 500 feet. I met a few people but just took a deep breath about 10m away and held it till the same distance past. There was also a brisk crosswind from west to east that was an additional protection on the way up.

I felt empowered to be able to do this and felt safe as there were few people on the trail and I took a deep breath and held it until at least 10m past them. I also loved going into high country with amazing views of Dovedale which most people don't appreciate changes direction and appears in views twice

OK I was on an e-bike but this cuts out at 15mph and I was doing nearly 20mph on the descent.

I don't know what this means to all of you. I have also been walking my sons dog in early evening in a local wood where I just dive into the trees if there is anyone near.

To add I am transfusion dependent and after having 3 units 3 days ago would estimate my Hb at 82. My pre transfusion level was 58 with platelets at 52.

[Stevesmum42]

Morning Skodaguy

What an amazing machine that must be,.... how wonderful to be able to get out and about and up high. I love the breath holding when you pass people.

Also diving into the trees when in the woods🌲....You are a shining example of positivity...and very importantly humour. I am imagining you, head up whizzing downhill ...keep on keeping on with your trusty bike.

Thank you so much for posting . Every good wish

Sandy x

[Kdavie12]

Oh wow! Well done! It just shows that when we take positive actions we feel better and help our quality of life. Thank you 😊

[jimb7174]

Good on you skodaguy, we have to be able to get out and do the things we love.

I think the joy of being on two wheels (whether assisted with a electric motor or not) is a fabulous experience.

Keep strong and taking those necessary measures that you have done to stay safe, although not sure how you hold your breath ascending a hill!!!

But most of all keep doing what you love and what makes you happy. Like you I will continue to walk my dogs and riding my bike to keep me in a good place mentally.

All the best.

Jim

[mhos61]

Well done to you, it’s good to feel empowered, especially at these times.

Derbyshire is my bordering county. It’s always been our favourite go to place. You are lucky to live amongst such beauty.

Keep it up.

Mary

[hunter5582]

Good on you! Great approach to getting out and enjoying the sights. I live in the lovely hills of West Virginia, close to the Shenandoah River. There is nothing like getting out and enjoying the beauty all around us.

[Otterfield]

Thank you so for sharing this. It's all too easy to get anxious about progression but your positive experience is full of hope and inspiration.

[Cja1956]

I think it’s wonderful that you can enjoy the beauty of the outdoors and that you found a creative way to do it during these challenging times. Keep on doing what what you’re doing. Life should be an adventure and we need to make the most of it.

[Paul123456]

26 years is an impressive achievement, especially from 26 years ago! What drug regime have you been on? I assume you are JAK2, any other mutations?

You clearly have a very positive attitude to life and this must make a big difference

Thanks for the inspiring update.

Best Paul

[skodaguy in reply to Paul123456]

I have no idea weither this is a personal message or not. I was diagnosed with PV in 2004 which evolved into MF and I was started on ruxolitinib in late 2004 . Shortly after I was diagnosed with CML and put on imatinib which I took for 20 months before telling my consultant to stop it so I could take a larger dose of rux.

Rux was beginning to fail as per all advances in technology re 8 tracks etc vs video. was then lucky to be accepted into the MANIFEST trial with a drug called CBI-0610 which I am told is a BET inhibitor. I don't expect this to be a panacea as it is is also a first in its field. However other people took part in experiments for for rux and imatinib, the first drug made to fit a specific receptor, so if after my good luck I am just repaiying that debt I am honoured to do so even though I am now transfusion dependent with a high ferritin level. Do i Try a low iron diet , I doubt if that will help so I may as just enjoy life.

Last Fri I took my bike up the Tissington trail. A 20 mile trip with the first half uphill and the second half downhill. I do ride an e-bike and make no apologies for doing so. Used to ride it on my racing bike but those days are long gone.

I think I am Jak 2 positive but really have never bothered with those details. You have to trust your doctor or you will never have peace or accept that is what you are.

Dr Colin Clayton re Skodaguy

[Fernsong]

Well done, you! Very inspiring! I live in rural France and have been walking the same lane - 3km out and then back - for about 15 years. Everyone thinks I'm bonkers and must be bored out of my brain with the same old scenery, but I love watching the seasons change, sheep and cattle births, the frosts (and occasional snow), dewy spiderwebs, deer, squirrels - I could go on and on!

Keep up the fresh air and exercise! So good for us in so many ways!

Best wishes x

[IrishSarah]

Great inspirational post 💚

Good on you Skodaguy!