Post by MPN-MATE Admin » Sat Nov 02, 2019 12:20 am
Hi everyone... 
I know that I do go one and on about the need for consistent physical activity, (especially in our matured years). However, it seems that that evidence just never stops being revealed... Hence, if we are to survive and enjoy our roles as loving Grandparents, then we do need to take better care of ourselves, in my view... 
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Best wishes
Steve
Absolutely Steve! I go to the gym first to exercise then swim vigorously for 45 minutes. Sometimes I go dragging with lower mood etc. But after each session I’m energized and feel really good. Physically and Emotionally. I push myself to do this even when I would rather do nothing yet I know it’s good for me and keeps the disease at bay and as you said gives me the energy and health to hang out all the time with our 6 grandkids ages 5-14. Thanks again for your upbeat posts!
Hey Clarke...
Thanks for your reply...
And I agree, almost every-time I endeavour to go cycling... I MUST drag myself out of my bed... However, I am always feeling the benefits, and can sense the added realisation that I am becoming ever stronger by remaining consistent in my exercise regime... I am definitely NOT trying to become an elite athlete of any description, but rather just be the BEST that I can be for me... 
... and it really is working!
Best wishes
Steve
Agree 100% apart from the bit about not drinking!
My philosophy is lots of exercise, ultra healthy anti inflammatory diet and 3 bots of red wine a week to keep me sane. For my age, my liver is in perfect condition so real danger it outlives the rest of me!
Hey Paul... 
I used to enjoy the juice of the grape with every evening meal...
However, once I became more serious about my health I noted that the alcohol always exacerbated my fatigue levels well beyond what proved tolerable for me...
Hence, I decided soon after that total abstinence was required in order to cycle the way that I now do... Must! ... if I am to be successful in my Fundraising venture...
20,000kms in Under 200 Days is a really long way buddy...
But hey, I guess we are all different, and each of us makes such decisions for themselves...
Please do have one for me...
Best wishes
Steve
Hi Paul I read about goods that lower platelets and have used these foods daily, tahini, natural cranberry juice no added sugar, alcohol about 4 ounces of red wine daily. My Oncologist agreed that red wine in moderation lowers platelets. To much will have the opposite impact and make us lazy and non motivated. Your protocol of lots of exercise and anti inflammatory food diet is also proven to fight disease. We attended a 6 hour lecture on inflammation being a root cause of disease which was eye opening especially with blood disorders.
Thanks for all those that encourage the conversation that Steve initiates on holistic approaches to defending our body against MPN’s.
Blessings,
Clarke
This is positive nagging Steve. Man was made to move and do. Most of us in western society have become potatoes. The culprits are many: schools, offices, city life, computers, TVs, Lack of nature and things to do outside.
My in-laws almost starved during and after WWII, but did 45-60“ of exercise every morning since their 50s. He just died at 96 and she’s still kickin‘ at 93. they ate the not particularly healthy Viennese diet, but ate at the same time every day, didn’t drink or smoke, ate little sugar, overdosed on red currants from their garden for a month ever summer (massive detox!), lived an emotionally very balanced life, had good friends, sleep well and always slept with an open window, even when -3C, loved listening to classical music (he played contrabass at the theater), stayed far away from stressful people, they laughed a lot and were dedicated to each other and their kids.
There are many facets necessary to get and stay healthy. Both body and soul must be taken care of. But our spirit can only go so far if the body is falling apart.
I’ve started moving again, now that I can and this activated my energy, my bowels (extremely important for all!!!) and my spirit is so much lighter, that in turn, has an affect in everything!
Pray for me: I’m starting a 5-day fast, right at this moment. Only water. I’ve made it to 2.5 days before and I felt great, but apparently, therapeutic is really the 5 day cycle. That causes autophagy
Cheers! Anag
Great Words of Wisdom and evidence for long living. Your in-laws are wonderful examples of living graciously. Classical music is great for mood I use the IDAGIO APP where you can stream your music mood preference, optimistic, joyful, calming, peaceful etc. Your fasting regimen sounds interesting , praying for your health breakthrough while you fast. Let us know how it goes!
Blessings,
Clarke
Thank you for the kind words of encouragement. I’ve made it through my first foodless day. Had a bit of a headache in the afternoon. That went away with 3 glasses of water. I have to remember to do a detox bath tomorrow and on Day 4. Also some light bouncing on the trampoline right before to keep my lymph system moving. I always appreciate prayers!! Thank you! Anag
Hi Steve,
I'm sure it's the case, but my breathlessness the muscle cramp problems hinder me from even walking for 5 minutes. Since one year I'm completely activities free. I hope someone has figured out some resolution to alleviate these side effects.
Cheers,
Malek.
Hey Malek...
Sounds like a really tough place you are in at the present, I do hope that things might improve for you soon...
Not sure what drugs you are taking? However, maybe chat with your doctors about trying to find ways of improving your fatigue levels...
And then, as I was just saying to Anag below... Try to create an exercise regime that you are able to do within your own level of capability... Take it slow, and try to build on your levels with being consistent...
Malek, when I first started cycling, I couldn't drag myself out of bed early hardly ever, and I could barely ride more than 3-5kms...
This week, I have ridden 339kms for the week... And I still struggle to get myself out there, it's hard but really worth it in the longer scheme of things, in my view...
However, only do so under the advice of your treating physicians too... of course...
Hope things improve for you soon...
Best
Steve
Hi Steve,
Thanks for the motivation and advices.
Regarding the fatigue thing, my doctor told me this is a disease byproduct and no fix around. Anyway it doesn't affect my work substantially, however I'm trying to avoid the business trips as much as possible. But of course fatigue affects my QoL, no complains.
Regarding the muscle cramps she gave me Leptar (Chinn) although she doesn't recommend it. Nevertheless Limptar improved my muscles cramps however I don't take until I reach the worst level of muscle cramps.
Regarding the breathlessness thing, they did lungs test and everything looked fine last month, my doctor doesn't seem to be having a resolution for this though.
I'm on Jakavi since 18 months for MF post PV, waiting for a match but no luck so far.
Cheers,
Malek.
Malek...
I am Post ET / MF & also on Jakafi... 25mg b/d and for almost three years now...
Breathlessness and anaemia are often a by-product of taking Ruxolitinib (Jakafi), because our medication is working to suppress our immune system...
After all, that is what Jakafi is supposed to be doing it is an Immunosuppressant!
Recently, I have started taking FOLIC Acid, and believe that helps with my anaemia, energy & fatigue levels...
Another acquaintance of mine is also Post PV/MF and he recently had an Iron infusion injection, and he tells me that he is now much better fatigue & energy wise etc...
Hence, making sweeping statement that there is nothing one can do to help with fatigue levels, I do not believe is an entirely correct statement at all, in my view...
There are many things that we are all able to do to improve our Quality of Life (QoL). However, and of all of the things that I have tried thus far, I am finding that building up my own energy resources through consistent exercise is the best thing to do in my own case...
Best wishes to you Malek...
Steve
Hey Steve,
I will ask my doctor whether it's ok to take Vitamin B in my next appointment.
Fatigue is of course an issue, but the main concern is definitely the breathlessness, as I'm not able to do any activity with the family. I take high dose 5-8g vitamin C daily, but it has never helped. Sometimes NSAID helps with the fatigue, but nothing seems to alleviate the breathlessness so far.
Cheers,
Malek.
Hey Malek...
Ask your Doc's to check your Iron levels... It is often being too low in Ferritin that contributes to our fatigue... But not oral 'B' supplements as such. What is required is an Iron infusion injection, apparently they can have a much longer and lasting effect, as I understand things...
Best wishes
Steve
I asked her previously about my Ferritin levels and she told me they check it in every test I do, and all is ok. Nevertheless I'll ask her whether it's ok to take these infections.
Thanks for the follow up.
Cheers,
Malek.
Hi Malek I’ve found that swimming meditates leg cramps and breathlessness. Moving the legs gets blood flowing and lowered my incidence of leg cramping. Also working my lungs out swimming vigorous laps and holding my breath also diminished the breathlessness I was experiencing. Start out slow and build up your endurance. I swim about 40 minutes a day, 44 laps, after the workout I’m energized, mood elevated and don’t think much about disease. Just thankful that these things truly help.
Hey Anag...
Couldn't agree more... However, everyone of us is just a tad different, and might have slightly or vastly different sets of challenges too...
Hence, it is always important to work within the limits of one's capabilities, and to seek the advice of one's medical team, just to err on the side of - 'NOT overdoing it'
Because I have done that also and had to pay that price, which was an almost 2 month setback in my training regime last time around etc...
Wow! A 5 day Fast... That is tough work to get up and running, and I wish you the best with your efforts too...
Steve
You certainly set a good example to us all with your extraordinary cycling activities!
Thanks Steve.
I agree 100% I do an annual challenge to walk 1000 miles and I'm generally able to do at least 3 miles a day. I've been more fatigued since switching to Pegasys but am working on building my stamina up again. With low haemaglobin I struggle with activities that get me out of breath, but hills have got easier as my general fitness has improved.
Hey Otterfield...
Great challenge walking 1,000 miles... I'd really struggle with the impact on my knees and that was another reason why I started cycling too... But some cope much better than others with running etc...
You are right as well... If one just tries to remain consistent, at first progress seems incredibly slow to non-existent, (at least it did for me), but that is when one must hang in there, and slowly but surely things will begin to improve, as they have in my case...
Both my Hgb & Hct bounce up and down, and they both appeared to struggle whilst I am now also taking Methotrexate (MTX), on top of Ruxolitinib. However, the FOLIC Acid double dose seems to help overcome some of my anaemia & fatigue...
I still have to drag myself out to maintain my exercise regime, but... I am in no doubt today just how good doing all of this is for me... Physically, mentally & emotionally...
A friend of mine, who was suffering somewhat similarly to you on Pegasys' had an Iron infusion injection which really helped him with his breathlessness & fatigue... Might be worth your looking into with your medical team too... (?)
Best wishes
Steve
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