Hi Everybody who replied to my post and thankyou for the information. I shall carry on with my exercise regime all the while that I am able to. The figures for all the blood counts still confuse me, but am getting to grips with it slowly. I think I am dealing with the CLL quite well under the circumstances although it has been life changing. (I should be abroad right now backpacking) It is not nice this thing but I have seen people now who are far worse of than I am, at least I have had a long life and am still fairly active and I give thanks for that.
John
(Title changed per PaulaS's excellent suggestion - Neil)
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Hi I'm glad you find the site helpful. I have walk for about an hr today. Steady pace enough to get warm but not breathless. It has made me fell much better especially being out in the open. Best wishes
Hi there, Thankyou for your reply and glad that you enjoyed your walk. There are times when I do not feel like doing much at all, but I find that if I put the effort in to do some form of exercise I do feel so much better for it. Keep walking and good luck.
Thanks for your reply. Yes it is sad to know that very young people and children are burdened with this disease. I can't help but not feel sorry for myself when I see the children going through it. Before I was diagnosed I had no Idea how many people were suffering with this problem. I suppose I had my head in the sand all the time I was well and fit.
Yes it is a sad reality that cancer is not selective, it upsets me to see the kids that are poorly,too.
But I believe we should be allowed to mourn our own diagnosis with equal importance without feeling guilt., As you mention it is a life changing event for us and our own children. I believe it is OK to feel for your own loss. I know my mortgage will not be paid up for another 20 years and my kids will finish Uni if they get there in at least ten to fifteen. I haven't lived a long enough life yet and intend still too.
keep moving it does help. Four years on from my diagnosis. I met yesterday the latest addition to my family, "Thor" a six week old chocolate boarder collie who will join me in two weeks we will train each other to go for a walk twice a day, Excercise is very important part of my own future. it does help. but always check your own status with your doc.
I believe that there is research that proves that dog owners/walkers live longer lives that the normal. The researchers put it down to two items. The regular exercise and also the lowering of the heart rate and stress levels that we all experience when around dogs or other pets..
Whilst it is well known that regular exercise is undoubtedly good for us and that owning certain kinds of pets can lower stress levels too, it's perhaps a little harsh to read, for those of us who don't own one and who are unable to exercise.
I think the main thing, is for us to keep as active as we are physically able and as Paula says below, even moving around the house will benefit.
Any method we can find, to reduce our stress levels is also essential, I believe, for our well being.
I mentioned our lovely dog (we actually had 2 dogs - mother and son), but I must say that they weren't always good stress relievers. Sometimes they gave us headaches, with their over-friendly, boisterous natures, and tendency to chase anything else that moved (could've been disastrous in sheep areas so we had to keep them on leads there). .
When the dogs had died, we missed them a lot and were thinking of getting another, but with my health situation, it didn't seem like a good idea. (Maybe a cat would be better???)
Anyway, as you say, the main thing is for us to keep as active as we can, even round the house. I often just jig/shake around to music - either standing or sitting, and that feels good - a great stress reliever. Maybe you do the same.
I hope you have a good day today, whatever you are doing..
Thanks - well that's my reading for today then. I shall be busy! Lol
I had cats all my life and often it was 3 at once - I'd have to sit and think for a few moments, in order to count up how many had lived with us altogether but I had to put my foot down and resist my daughter's pleas for another, a number of years ago, ironically because of my health - I couldn't risk tripping over one on the stairs, for one thing.
Hi Nick, Thanks for sharing about your own family situation. Having CLL is much harder for you younger people, with younger families and many responsibilities. And I'm sure we'd all agree that we should allow ourselves to mourn our own diagnosis without guilt. There are times to try and forget it, and be thankful for the good things in our lives, but also times to grieve...
Nice to hear about your new dog, "Thor". It would be nice to see a photo of him, maybe on one of your walks. I hope he and you have many years of happy walking together. We used to have a black and white border collie - lovely dogs, and very energetic.
CLL is different in us all and impacts us each very differently too, not just us but our family. Where we are in our life journey must make a difference to many; younger and older.,Diagnosis is a difficult time and delivers potential change and loss we should all be able to mourn before we can adjust. The pain this brings I think we can all relate to, it is a very difficult time we have all used different methods to help ourselves find a way through this.
Diagnosis is not a reason to stop living, it just involves a lot of adjusting and this can take a long time and affect how we live greatly. I still recall that pit in my stomach and fog in my head while i seemed to wade in treacle for six months. i didn't handle it too well myself, so remember it is not easy.
Keeping active is an important part living or maintaining good general health, we don't have to become marathon runners or sportspeople to improve our own. I myself succumbed to what I thought were early B symptoms of CLL at diagnosis and developed a sedentary lifestyle because of this. This nearly ended it for me as I had escalating heart disease and I was making an unknown heart condition worse without knowing it.
I believe we can always do something to aid our bodies exercise we just have to find a level that suits our capabilities , always consult your medical team for approval.
Finding ways that suite me that help overcome the challenges I face with daily living is part of my own battle with balancing my own life.. This is an interesting thread, implementing procedures to keep me active is important as this does improve my quality of life and improve tasks involved in daily living as well as keeping me off the cardiac surgeons table (hopefully).
The winter months seem to make motivation harder, now that my garden has gone to sleep.. Thor, my new puppy will help with that , he will need walking in all weathers. he probably won't be very calming in the beginning but will bring great joy into the household and happiness and smiles (especially for the kids while a puppy) then I can benifit from his companionship to add to that of my cat during the days.
My heart restricts the amount of exercise I can undertake but my medics have advised I maintain my fitness at a level to prevent further deterioration.
from experience this has helped me live with other challenges especially CLL ,Many of us in our group have conditions that limit what they can do, . Finding activities that keep me moving within my capabilities have made a massive difference to day to day life and outlook for me
Remaining occupied and having interests to focus on also help in the early days this kept my mind off thoughts about what the condition may bring and helped me adjust to the diagnosis and live a little, these days I think about CLL in me even less. Learning about CLL was a mixed blessing for me because it actually focused my mind on the CLL as i am obsessive,. I f I could impart any advice to others it would be to learn enough to suit your own circumstance and need and then if you can, put it on a shelf and aim to live a little.
Hi Nick, this is rather a late response to your reply above, but I wanted to thank you for sharing more about your own journey. Your words "that pit in my stomach and fog in my head while I seemed to wade in treacle for six months". really rang bells with me.
But your enthusiasm re the coming puppy also rang bells. It's usually the kids who work on getting Mum and Dad to agree to a puppy, but with your family it seems it was you who were most keen. I loved the way you said you felt like a young boy
Not long now, I think, till Thor joins your family. If he brings half as much joy to your family, as our dogs did to ours, then you're in for a great time.
Paula
P.S. I mentioned the stress of dog keeping earlier, but if you only have ONE dog (we had two), and if you train him well from the start (we didn't do too well on that), then I'm sure it will be different for you.
If I am honest it was fresh in my mind from recently explaining to HU why we require a reception area for recently diagnosed and newcomers to aid easy navigation on arrival..
It was brought back very clearly for me while reflecting after the recent post healthunlocked.com/cllsuppo... when I revisited my early blogs.
Yes am really excited about my new puppy, he is full of mischief. I was told the other day he had been a naughty boy and climbed the stairs for the first time at 6 weeks old! I agree I am going to be kept busy with just the one I think/
Best to all and look forwards to hooking up with some at Bart's on Tuesday
....." fog in my head while I seemed to wade in treacle " ...
That is the perfect description of my last month or so, with the past few days a ' pea souper ' of a fog ... it's a weird sensation...
Being practically housebound, I still manage with the help of a boxful of various gadjet's ... ( I was going to say exercise toy's, but you might have got the wrong impression ) .. to get a little exercise .
I have a ' rockin' abs' chair - ( you tip the chair backwards, on to rockers that allow me to do some exercising ) .... my son came home and found me out cold, with my arm weights and spring bar all ready to go ... he was amazed that I was perfectly balanced on the rockers ....
.... whatever happened to this fine young athlete of a boy .....
Hi John, I'm glad you were able to change the title of your post. I hope I didn't sound critical or bossy in suggesting the change, but I thought more people might be drawn to read it, if they knew what it was about.
Enjoy your walking. Like you, I sometimes don't feel like exercising, but I usually feel much better when I do - even if it's just hoovering the house. (Even better to be out walking in the Peak District)
Best wishes,
Paula
I was reading Sparkler's post and thought how lucky I am to be able to exercise. Many days I feel I really don't want to work out today, but I go and mostly feel better for it. To not have that choice is really hard, and how Sparkler and others remain positive and contribute much to the site amazes me and makes me grateful that I can exercise.
Thank you to all those who cannot exercise (you know who you are) I will be wishing you well instead of feeling sorry for myself when when I struggle a bit to keep some level of fitness.
Hope the labrador helps you enjoy a walk Nick, but take care they seem to have loads of energy, and we don't.
Many who are physically able and advocate exercise, I think sometimes forget that there are some of us sadly, who don't have that choice. No matter how much we would like to do what others take for granted, we simply can't.
So I am grateful to you Bub, for remembering us and I wish you well in your own struggle to keep fit.
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(Imbruvica), Ibrutinib, To live or to die
Rehearsing being 'In Remission'
Now being prescribed Ibrutinib 
Advice re exercise and cold showers.
aches and pains when I exercise. 
