Sorry, I haven’t contributed on here for a long time. I have had Polycythaemia Vera since 2016. I am one of the lucky ones that do not suffer to much, mainly fatigue. I find I can walk around four miles, but if there are any hills it becomes a ‘trudge’. my favourite exercise is cycling, My usual ride is eight miles as often as possible on local cyclepaths and side roads. My part of South Gloucestershire is brilliant for this, I can go miles and miles without using main roads. My bike is a folding Brompton, and like a lot of owners we are ‘Brompton Nerds’. While googling Brompton, as you do, I came across the video below. I’m snowed in this morning, but come the spring this video has set me thinking. I have a railway station close by, perhaps I should use it more, rather than use the car! I’m not going to go camping, I’m 84! but there are many places I could go for a days ride. Definitely on next years ‘to do list’
Hope you find this series inspiring.
Morning @Beejay
How fantastic 84. We all need a little inspiration sometimes. It’s not snowing here for me but it’s cold and icy and I’m still plucking up the where with all to walk in the ice to feed and water my chickens .
My husband was inspired recently to get an exercise bike he hates exercising but he is doing really well and uses it every day in the garage I will show him this video.
You have certainly inspired me to move today so I am wrapping up and heading out now. But there is nothing wrong with days of rest too, hoping you have a wonderful Sunday.
Hi @Beejay You are an inspiration to us all, your walks and bike rides sound wonderful, thanks for the video.
It’s been extremely foggy and minus 4 degrees to 0 degrees all day.
This afternoon there were a very few little bits of snow and hubby has just come in to say that the pavements are now covered in a light dusting of snow.
I love your idea of letting ‘the train take the strain’, good idea for 2023.
Enjoy life
Thank you all for your interest. If Susanna the video maker can do this between breast cancer treatments, perhaps we should not get too discouraged from trying just a little more, but I know many can’t.
Erica, perhaps I should have titled this thread as ‘Hopes for 2023’ I still refer to your ‘Hopes for 2022’ still brilliant.
Oh dear. As a mere stripling of 78, you make me feel very couch potato! My “excuse” is the fatiguing side effects of treatment for prostate cancer, but I know I should be doing more exercise. Weather in Aberdeen (-9.6C this morning) isn’t that encouraging. Excuses, excuses.
Well BJ Thank you so much for your wonderful post. You are the first person I have come across on this forum with my condition and touching the same age! (I’m new to it since just before Christmas) I was diagnosed with Polycythaemia Ruba Vera in 2021. I am now 75 & feeling every bit of it. I couldnt even think of taking a train or bus anywhere. I had lost all confidence & only drove to my clinic appointments about 2 kilometres away.
I couldn’t wake up in the mornings let alone get up as the Hydrea was doping me out of it. I was started off on 500mg on alternate days then increased to 500mg 6 days per week. Begged to have dosage reviewed & now back to 500mg 3 days per week with venesection starting with a gap of 3 weeks clinic visit per week, then 4 weeks gap, & after this week’s clinic, have to attend in 6 weeks time. I also suffered considerable hair loss I forgot to mention.
I didn’t have to have a Venesection this week as thankfully my Hct was 0.39, Hb 11.6 & PLT 459. I feel much better since the reduction in meds which could be an option worth discussing with Team for others??
I gave up my art classes as couldn’t think of driving there. I wasn’t sure how far I should even walk! did ask but answer I got was "yes, it is ok to walk’!! As a result of the encouragement I got from this Forum, I drove to one of the beaches last weekend, took a ramble around the area, tide I knew was in, but I needed to see if approach to beach was accessable enough for me. Imagine it was 2 years since I drove to that beach! which I walked on for hours approx twice weekly prior to that. You are indeed a breath of fresh air, I wish you the very best of luck & long may it last for you. You are indeed an Inspiration.
Glad you managed a trip to the beach. Yes, I find I have to keep at it! My bike was off the road at the beginning of the year for a couple of weeks whilst I sorted a couple of problems out, so I did a few more walks than usual. That was a mistake! and suffered for it. Now try and alternate cycle rides and short walks. getting better as the weather improves. I am very lucky here that I can walk and cycle without using busy roads. Take care and don’t over do it, but you will probably find you can do more than you think. My local 8 mile cycle ride is in fact a series of loops around the local railway station, so I can always cut the trip short and head home, if it turns too cold, or I’m not up to it. Have an escape route ready.
You are indeed in a beautiful place, off the beaten track, yet close to the railway station which is ideal. I think you are marvelous to cycle, a very essential form of exercise regardless of health issues, for everyone.
Keep on going, out in the fresh air, you are a breath of fresh air yourself with such a positive attitude.
Hi. @Beejay. It was inspiring reading about your cycle rides. I love cycling but don’t do enough of it. I have a dodgy hip and knee which can make it difficult at times. However, yesterday I was determined to go for a bike ride. We are lucky that we live very near the cycle track that was once a railway line. The tracks are long gone thanks to Dr Beeching. To the advantage of cyclists and dog walkers, we now have the track that goes in two directions. One way goes directly into the countryside, and the other way goes towards the town and picks up the river path all the way to the sea. That is the direction we chose and cycled about 6miles. 3 miles to the local marina to see lots of boats and wildlife. Then 3 miles back. We didn’t go all the way to the sea, as that is a lot further and I didn’t want to overdo it on my first ride. I felt very energised after the ride, so now I am keen to do more.
Hi. Chris1. I’m glad you managed to go on a cycling trip. I find, even if I don’t feel like going out, but just do it, I do feel much better for it and it makes me feel good for the rest of the day. I also have to make sure I walk several times a week. When my bike was of the road at the beginning of the year, I over did the walking to compensate and suffered some hip pain. but slowly increasing my walking distance and concentrating on not slouching and not looking down has greatly eased the discomfort. I have an Out Patient appointment (In person, not phone! Wow!) this week, so I’m determined I’m going to walk to the hospital and not use the car. It’s only one and a half miles, and they have a coffee shop. One thing I found amusing, the front of my house faces, near enough, due North and the hospital lies in a north west direction. I used Google Maps to ‘give me a walking route to the hospital’ and it said ‘go out the back door, and head south…’ I’ve lived here 43 years and would never have considered that, but it’s right, and it avoids any hills… It wouldn’t suggest that route with the car as it uses some footpaths.
Sorry to waffle on, but keep active.
Hi @Beejay. A mile and a half seems quite a long way. I find walking harder than cycling as I have a spinal problem. A tea or coffee at the end of your walk will spur you on though.
I also have hospital appointments this coming week. Monday I have two brain scans. (Looking for minute blood clots), and Tuesday I see my haematologist. Then hopefully after all that I can get back on my bike and start to feel like a real person again instead of just being a patient. Good old Google maps. It gives us routes that we wouldn’t think of. Once when we were on holiday in Cornwall, it tried to send us down onto the beach. Perhaps it thought we were a hydrocar.
Hi @Beejay and @Chris1, no, you did not waffle, yes, I also find, even if I don’t feel like going out, but just do it, I do feel much better for it and it makes me feel good for the rest of the day.
I also have spinal problems of scoliosis and osteoporosis and I find it a dilemma to try and stand up straight but with so many uneven pavements and dog messes etc. I feel I need to watch where I am walking.
I don’t have drinks whilst out walking in case I need the loo, however I am an expert on the locations of such facilities.
You mentioned seeing kingfishers sometimes on another post @Chris1 I believe, I see them occasionally. We have a lot of parquets round here, I know their reputation, but they are a lovely lime green and quite a sight in certain trees or flying about, usually in flocks.
Aren’t we lucky that our walks and nature are free.
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I will show him this video.
