Living With MDS: Managing Fatigue
Published: Jun 21, 2012 11:19 am
I am not actually sure that you “manage” fatigue. I think it’s kind of more likely that you wage an ongoing battle with it in order to trick your mind into ignoring it.
How many years have I in varying degrees been exhausted? That is hard to say because when I get it right I don’t notice how tired I am.
I have a few tools that I use with some success. I don’t have any magic bullets. Instead, my tools to deal with fatigue are exercise, sleep, and food.
For me, exercise has always been at the top of the list. It can be a walk , a bike ride, or a gym workout. Sleep and doing whatever it takes to make sure I get enough sleep is second. Finally, I control what kinds of food go into my body. For me, these are fruits, vegetables, whole grains, and some occasional lean protein.
I listed exercise first because I used to race bicycles so exercise is natural for me. However, it is very unintuitive when you are tired to think about making yourself more tired. It also is ridiculously hard to make yourself do anything if you feel exhausted. If you don’t approach exercise slowly, you can easily overdo it. When you are “sick,” you also think you might feel better if you rest.
However, I have found exercise to be the most valuable tool for dealing with fatigue.
Here are some of the things I tell myself to get myself moving:
- You can sit here and feel tired or you can go out for a walk and feel tired. In both cases, you are going to be tired but in one you got out in the sunshine, saw some people, plants, and animals and maybe you even noticed you were alive for awhile.
- You are tired and you are “sick;” the two things are probably related, but the sickness is not going away. Don’t let the tiredness take over your life, do something, even a very small thing, every day so that you can point to it and say I was alive today and I did that.
- Today you were really tired and all you did was read a book, tomorrow you might not be so tired, what one thing, that you might be able to do, would make you a little bit happy to have done it tomorrow?
- I feel better today what could I do today that I couldn’t do yesterday?
- Exercise significantly improves the immune system so it might help you to live longer and at the same time improve your quality of life.
I am sure that some of you are working as I was for most of the time I have had myelodysplatic syndromes (MDS).
Every time I was treated for anything significant, there has been some kind of a “crawl, stand, and walk” approach back to some new or different degree of “wellness.”
Trying to manage a work life while “managing” fatigue is unimaginably difficult. Sometimes it just can’t be done. Be kind to yourself, don’t be rigid in your thinking but don’t let yourself off the hook either.
Sleep is very important for our wellbeing, but most of us don’t want to sleep our whole life away. I am, however, tolerant of a 14-hour night, because sometimes my body just demands it. The six-hour night has never been associated with wellbeing for me. If I am sleeping so little, I need to fix my schedule and/or add sleep medications, because if I don’t how can I be sure that I am not just tired because I haven’t been sleeping? I try to get a nine-hour night because for me that has always represented “a good night’s sleep.”
With food, I am old fashioned. I follow the mantra: Buy whole, unprocessed ingredients, prepare the meals yourself, and only eat what you cook. The argument here is simple: If you practice good nutrition, you can be assured that it is not poor nutrition that is making you tired.
I think that simple meals are often the best, particularly when you are too tired to cook : omelettes, toast, soup, rice with vegetables, and salads are fast and easy. If you cook extra on the days you feel better, you have leftovers for the days you don’t.
And meal preparation has one additional advantage: I keep telling myself that even the worst moments of shopping and cooking (even cleaning) still can count as “doing something,” which so important for managing fatigue.
Chores loom large in the real world of fatigue. In my opinion, it is okay to let the house go to the dogs sometimes; just take good care of yourself, everyday matters, everything you do counts.
In my next article, I will write about the time when my MDS entered the acute phase.
- Are You Tired? A Frank Discussion About Fatigue In Patients With Myelodysplastic Syndromes
- Personal Perspective: MDS Patient Chooses Not To Pursue Aggressive Treatment
- Caring For A Loved One With Myelodysplastic Syndromes – Part 1: Making Your Own Health A Priority
- Beacon NewsFlashes – July 18, 2011
- Caring For A Loved One With Myelodysplastic Syndromes – Part 4: From A Patient’s Perspective