As an MPN patient our lives are similar to the crew of the Starship Enterprise. We are on a journey to “boldly go where no man has gone before.” It’s the reason you search the Internet, are part of MPN lists and why you have joined us here at MPNforum. We seek information, answers to questions our doctors just cannot answer for us.
In the World of living with an MPN we all at some point must deal with fatigue. The medical community does not know exactly why fatigue plays such a debilitating role in MPN’s or Cancer. MPN’s are very complex and there is little clinical data to help doctors understand fatigue.
Fatigue is defined as a daily lack of energy unusual or excessive whole-body tiredness, not relieved by sleep. It can be acute (lasting a month or less) or chronic (lasting from 1 month to 6 months or in the worst cases even longer). Fatigue can have a profound negative impact paralyzing a person’s ability to function.
There are of course hematologists who still refuse to recognize fatigue being related to an MPN sin spite of overwhelmingly patient support to the contrary. When you don’t have recognized conclusive scientific data doctors lean towards discarding patient feedback. Complicating the situation further is other conditions such as depression; anemia, stress and lack of sleep are all linked to causes of fatigue. Since these conditions have scientific data to support their existence along with readily available pharmaceutical solutions for treatment these types of patient “complaints” are treatable and a doctor will listen to you all day.
After having just been diagnosed with an MPN who wouldn’t suffer from some depression, anger, stress or lack of sleep? I know I did for quite some time; it was a shock to my entire system. I felt sorry for myself and was deeply depressed. My fatigue came in waves and I often slept in until noon on weekends when I could. Even dosed off in office meetings, sometimes taking naps in my office when I could steal some time. I was scared and so consumed with my diagnosis and pending death. It led to horrible anxiety attacks that forced me to rush in to emergency rooms on weekends and constant after-hours calls to my doctors.
There were times my fatigue was so heavy I thought I would collapse and not wake up. Then there were times I wished this is how I would die. It would be calm and simple. My life would end and so would all the pain I was feeling from being diagnosed and the fatigue, it would be gone as well.
For twenty plus years I have told my hematologist and his staff that exercise and nutrition, especially a hard-core cardiovascular exercise program can eliminate fatigue. In spite of being told on more than one occasion by my doctors they do not understand why I am still here with such an aggressive Polycythemia Vera or why I am fatigue free. I get the we don’t have the data to support your claim regarding exercise lets move on.
But I will never give up on this subject because I am not just passionate about I know I am hot onto something. I know if I skip my exercise program as I have at times when I am traveling for business for extended periods of time, within three to four weeks fatigue slowly creeps its way back in to my life.
While none of my hard work can repair my bone marrow or stop my PV from progressing if that is what is in store for me. For most of us with PV we can at the very least significantly reduce the impact fatigue has on our quality of life. As I mentioned in my MPN Life June column “Thinking outside the box” by introducing new nutritional and cardiovascular exercise changes my life I have had a profound improvement in the quality of my life. I have reprogramed my mind and body to focus on making my body whole again.
The question you must ask yourself is how badly do you want to improve the quality of your life?
Do you think I enjoy getting up some mornings at 5:30 AM to make my way to the gym to start my workouts or laps in the pool? After a long day at the office there are many times I want to go home and not ride my bike but I always go back to where I used to be and I am not going back there.
All I can do. All any of us can do is take control of what we have control over and go for it! This battle we are in is for life and I don’t know about you but I love my live and the people in it so much I will do whatever it takes to give me an edge. If you can do that I guarantee you will dramatically improve the quality of your life and for many of us its worth it.
CRAWL. WALK. RUN.
We are all creatures of habit. Which makes starting something, breaking bad habits and creating lifestyle changes all the more challenging. These are the obstacles one must over come to have a fighting chance of conquering fatigue.
I recently read a study that tracked how long it takes to truly change one’s life when integrating exercise as a lifestyle chang. It takes ninety days of continual work before it becomes a regular part of ones life. People who exercise five days a week or more have the highest rates of success. Any less than that and the rate at which people find reasons to skip exercising increase dramatically.
Hey I heard what you are thinking! And yes can make the time to do this! I understand even though we are talking about dramatically improving the quality of ones life people naturally find reasons not to begin or continue focusing on change.” I have also heard. “I am too busy, its hard work; I am tired, can’t turn off the TV tonight a Twilight Zone Marathon is on.” Or for you folks in theUK“an EastEnders Marathon starts tonight.” So today become tomorrow. Tomorrow becomes next week. Next week becomes next month and then next year. I will have none of that. I understand all of this because I at one point used many of those same excuses.
WELCOME TO PHASE ONE: CRAWL
If you are getting back to exercise for the very first time in quite a while there will be some challenges at times. Some phases and individual exercises will go better than others.
Rule# 1 always build setbacks, stops and starts in to your plan. They are normal and it be expected. These are not failures but require adjustments. You will cry or quit at times but you WILL get back up and keep Crawling.
Rule#2 Always consult your doctor before starting an exercise program. After having my Doctor sign off on my plan about six months in to it while reviewing my lab work he noticed an unusual increase in my white cell count. His first question to me. “Did I exercise this morning prior to my blood test?” I replied, “About an hour prior to the lab test I ran 5 miles.” Turns out when you exercise there can be an increase in your white cells. That is exactly what it turned out to be. That is why before you Crawl meet with your doctor.
Get your computer, smart phone, pen or paper and create an outline of your plan. Creating a schedule that includes a date and time for all your exercise activities is key to starting this off right and most importantly, keeping it going. For your first thirty days you will start with a five-day plan. What did you say? “A five-day plan is too much!” Well what if you start with a little as ten minutes a day for five days? I know you can find ten minutes each day to do something. This is ok in the Crawl stage.
So what type of exercise should you start out with in Crawl? Crawl is not about increasing or raising your intensity. In the Crawl phase we will not be able to reduce severe fatigue but you will be using Crawl to get back in to shape slowly and of course safely. The cardiovascular exercise you choose will depend on what you have access to and what you are capable of doing.
Remember you do not have to join a gym to do cardio work. Simple things like walking your Dog or even your neighbor’s dog can be part of your plan. In our July Issue of MPN Forum in my interview with Alison Scott she talked about something as simple as just walking up and down the stairs at her house.
When I started all I did for the first month was to sit on the edge of my pool and kick my legs in the water to start building up my leg muscles and increase my heart rate. You can start out doing the same thing in your bathtub and it actually works. Another place to limber up is the local supermarket. First of all if its hot outside most are air-conditioned so it’s a great place to go to anyway. And you can pick up some deliciously nutritional organic fruits and veggies while you are there. Hey if you are moving your body its exercise.
Don’t forget to have fun. You should never forget about your mental health as well. Bring music with you if you can and find a playlist you enjoy. Well that is the beginning of Crawl. Please email or post here at MPN Forum with your questions. And if you have registered here at the Forum first you can do the same thing at our Facebook page: firstname.lastname@example.org In my September column I will cover WALK and RUN.
© Jeremy Smith and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Jeremy Smith and MPNforum.com with appropriate and specific direction to the original content.