Fatigue - It Makes Me Tired
Just thinking about fatigue can make me tired! There are so many aspects to this issue. First, people can mean so many different things when they use the word. Are they talking about muscle fatigue that happens when they have exercised beyond the limits of their muscle(s)? Do they mean brain fog and difficulty processing information at certain times or nearly all the time? Do they mean a lack of a sense of meaning or joy from activities that used to be meaningful to them?
Definitions of Fatigue
The American Heritage Dictionary of the English Language lists three definitions of fatigue (the noun), which are:
physical or mental weariness resulting from effort or activity,
something, such as tiring effort or activity, that causes tiredness or weariness, and
the decreased capacity or complete inability of an organism, organ, or part to function normally because of excessive stimulation or prolonged exertion.
Taber’s Cyclopedic Medical Dictionary defines fatigue as:
A feeling of tiredness or weariness resulting from continued activity or as a side effect of some psychotropic drug. This overwhelming sustained sense of exhaustion results in decreased capacity for physical and mental work.
The condition of an organ or tissue in which its response to stimulation is reduced or lost as a result of overactivity.
To bring about fatigue (when the word is a verb) The medical definition is closer to what I think polio survivors mean when they talk about exhaustion, rather than the non-medical one.
Causes of Fatigue
There can also be so-o-o many causes for a feeling of fatigue - separate from, or in addition, to one’s prior history of polio and whatever damage the polio might have caused. The website for the Mayo Clinic (www.mayoclinic.org) lists 27 conditions that (can) be the basis for your feeling this way! These other conditions, if present, can be the sole reason that one is fatigued or there can be more than one thing causing this feeling of exhaustion. When these conditions are added together, it can be truly tiresome.
It makes sense that if one is not getting restorative sleep, they will be tired the next day. Causes of nonrestorative sleep can include untreated sleep apneas, restless legs, the need for frequent trips to the bathroom during the night, depression, and difficulty getting to sleep or maintaining sleep.
Unrelated to poor sleep is an even longer list of conditions that can be responsible for fatigue including severe liver, kidney, heart or lung diseases, various causes of anemia, many cancers or the effects of chemotherapy or radiation used to treat them, auto-immune diseases such as rheumatoid arthritis or inflammatory bowel conditions, an underactive or overactive thyroid gland, uncontrolled blood sugar, a number of medications (pain meds especially opioids, some heart and blood pressure drugs, antihistamines, and meds for anxiety, depression, and other mental health issues), and miscellaneous conditions as diverse as chronic fatigue syndrome, fibromyalgia, post-concussion syndrome, multiple sclerosis, and grief.
Treatment Options for Fatigue
It is important to rule out and/or treat conditions that could be causing or contributing to a person’s feeling of being overtired. Depending upon the cause of your fatigue, the treatments can vary and will be different than the treatment recommended for fatigue due to post-polio syndrome (PPS).
Note: Your physician can treat these causes simultaneously while the individual is enacting the measures recommended for post-polio fatigue.
Several medications to treat PPS fatigue have been researched. Several had significant side effects and, to date, none have been found to be any more effective than lifestyle changes. It would be wonderful if there were medications that decreased or eliminated post-polio fatigue but as I write this in 2022, that simply is NOT the case.
The measures that have been found to be helpful are pacing activities, taking rest breaks, and a careful assessment of one’s activities and using that information to modify one’s activities. Attached is an activity diary (fatigue log at the end of this article) that was developed by the International Centre for Polio Education for use in their clinic.
To cover the kind of detail that is needed to get a “full picture”, this diary/log will be a multi-page exercise.
During the period that the data is being recorded, recordings of activity should be made at least once an hour. It is easy to “forget” or negate some activities that you may just take for granted if you wait until the end of the day to write them down.
After completion of a carefully done, brutally honest activity diary, some polio survivors will be able to self-identify areas where they need to make changes. I imagine that the majority will benefit from going over the results with someone who can be much more objective. That person might be a trusted friend, a spouse, or a professional such as a physical or occupational therapist.
Should, Need to, Have to, and Want to
Long-held beliefs such as that it is mandatory that one makes their bed each day or that you must be the person mowing the lawn, may need to be put aside and hard calculations made based solely on the energy output needed for that activity.
Is it so important that YOU perform certain tasks in a certain way that you then have no energy left to do things that you truly enjoy doing?
What is the essence of those enjoyable activities?
If walking or hiking brings you joy—is it mostly about being out in nature?
Is it mostly the time spent with another person or your pet?
If the physical act of walking is exhausting or causes pain, could you still reap the enjoyable benefits of this activity riding in a powered mobility device?
In his article Conserve to Preserve – What Does it Really Mean?, Dr. William DeMayo wrote:
“Chronic overuse, not activity, is the culprit to avoid.” Dr. DeMayo expanded on this idea as he wrote, “I would suggest it would be healthier to say, "Deciding what you really Want to do and holding off of the things that you want to do (w = impulse or desire, but not a decision)."
“I believe that words that we use in our head have power over us and so deciding what we Want vs what we want can be an important factor in changing our decisions. Many people do this already with their finances and purchases but have not thought to apply the same language to their activity and health.”
It can be useful to calculate the use of your energy day in the same way you’d think about the amount of gasoline in the gas tank when you consider a trip or the amount of money you have in your checking account when contemplating a purchase.
Dr. DeMayo continued,
“Another set of similar words that can have power in influencing our behavior and health include: ‘need to’, ‘have to’, and ‘should’. These are all disabling words that give us no choices. Using "Want to" (as a decision, after weighing pros and cons") in place of these words is always much more enabling and positive. I often say “The only thing we ‘Have To’ do in life is die, everything else is a choice. Once we acknowledge this truth, we can make progressively healthier choices.
The holidays are a particularly difficult time when it comes to these activity decisions. To avoid chronic overuse activities, some helpful questions to consider during a holiday season may include:
Do I want to continue to push myself to prepare the big family dinner (and risk creating pain and exhaustion) or do I Want to put my relationships with family first and preserve my energy by asking for help?
Do I need to climb that ladder to put up decorations despite the obvious risk?
Do I have to bake 12 dozen cookies, or do I Want to avoid overdoing it and dial it back a bit and ask for help or purchase cookies?
Should I ‘shop ‘til I drop’ or do I Want to be a better example to my kids and grandkids by purchasing or even making one special gift.
All these questions center around individual values, desires, and goals. It is my hope, especially during the holiday season, that we can all focus on our real Wants and be less driven by desires/wants, ‘have to’, ‘need to’, and a ‘should’ mentality.”
Dr. DeMayo used the holidays as an example perhaps because it intensely highlights the choices we can make about activities that may be adding up to make us tired, fatigued, weary to the bone. Discovering what your triggers are will not be easy, nor quick. There may be a few “aha” moments along the way, but mostly it will be a series of small insights and steps that add up to decreasing your fatigue while still allowing you to get enjoyment out of your life.
I recommend that you fill out the Post-Polio Fatigue Log. The act of conscientiously filling out this activity diary/ fatigue log will be challenging. Simply sitting down once every hour to list the activities that you did in the last hour and how hard it was to do those activities may lessen your exhaustion by forcing you to take a physical rest break every hour.
Countless polio survivors who have completed the activity diary worksheets and then modified their lives continue having enjoyable and meaningful lives. Polio survivors are creative beings who learned to walk when doctors said they would never walk or discovered they could breathe on their own by using a technique such as “frog breathing” that even the medical community did not know about. You can do this too!
Maybe you will even develop some tips and techniques that you can share with others to help them make their lives better too.