Before I share something I have been thinking about long and deep lately, I want to be as transparent as possible. This post is my understanding of what I believe is going on in my body in relation to how to better explain the devastating depths of the fatigue I constantly struggle with. I am not a researcher, scientist, or doctor. Having said that, however, I have now lived with this illness for 20+ years and I believe my ME experience allows me some latitude with this post.
Lastly, I have been pondering the issue of the chronic fatigue in ME because of the extreme difficulty I have had these past decades in putting into words what is occurring within me in a manner that allows those without this illness to understand the true devastation occurring within me.
Surprisingly, I actually tested what I am about to share with you today with a friend, and for the very first time, saw the light bulb of understanding and realization come on for someone who does not live with this illness.
For most of those who live with ME, trying to get friends and family to understand the depth and devastation of the exhaustive nature of the fatigue associated with our illness is probably one of the most challenging issues we face.
Often when I have mentioned that I am resting a lot as a result of severe fatigue, or chronic fatigue, it is not uncommon to receive a comment in return such as either one of these:
I would love to spend several weeks doing nothing but resting. I’m so tired.
All you need to do is get out more, get some sunshine and exercise and then you will feel right as rain.
While I understand that these individuals have no way to understand the ravishing effects of the kind of fatigue I am speaking of, I often find myself getting prickly at their response.
While thinking about the conundrum of the fatigue issue in ME recently, my mind wandered back to a class I had in college. I can remember the moment as if it just happened to me seconds ago. It was a nutrition class that I was taking in lieu of a needed science requirement.
This particular day we were discussing energy in the body and the instructor shared a bit of information that set off a light bulb moment for me. She said that when the body has an energy deficit, it must take energy from areas it considers not critical and bring it to those areas in the body that are critical.
One of the first areas the body will pull energy from is our … brain.
All of a sudden I realized that this explained why I have had so many cognitive issues. If the brain was not fully fueled with the energy it needed to function at 100%, it would result in my computer (brain) not being able to accurately carry out the functions it was designed to do, i.e. add 2+2 and get 4 (not 800 as I have done on several occasions) or give me the word dog when I’m looking for the word cat, and so forth.
In addition, I realized that with less energy, the brain would also most likely have less oxygen. We all know that reduced oxygen in the body wreaks havoc. Unfortunately, many studies on the brains of ME patients bear that truth out.
Assume with me, if you will, that pulling energy from the brain is not enough to protect the vital organs so the body decides it now has to pull energy from somewhere else. So it determines that the extremities such as my arms and legs don’t require all the energy they get and it pulls some from these areas.
Now I find myself moving through the day with incredible heaviness because my body is no longer ‘supporting’ my extremities with all the energy they need to perform their tasks or even move through the air around me.
In addition, every task I try to accomplish with my limbs now feels like a monumental task. Lifting a toothbrush now feels as if I am lifting a 50-pound barbell. Supporting my body becomes a tottering issue for my legs, always leaving me wondering when they will give out and collapse on me.
As if that is not enough, my body then decides that it still requires more energy to keep the vital organs in my body functioning. Now it decides to take some of the energy from my gut.
What hugely important part of our anatomy resides in our gut? For those that may not know, it is our immune system. If I recall correctly, 2/3 of our immune systems resides in our gut.
Think about that for a moment. It is one thing to be energy deprived in my arms and legs, but having less energy for my immune system to function has ! Not only does it impact the ability for my gut to process nutrients, etc., but an improperly functioning immune system can wreak havoc in every, single organ in my body!
This, I realized, is the issue I have with calling ME, Chronic Fatigue (Syndrome). By applying a name that many people innately comprehend as, slightly worn out, tired, needing some refreshing rest or rejuvenation, those who do not have this illness have no frame of reference to understand the massive devastation and destruction that is resulting in my body.
I really think if we called this particular aspect of ME something like, Energy Deficit Crisis, or Critical Energy Deficit, we would see a different response in those we share this with because this verbiage clearly implies that a serious issue is resulting as a result of a lack – or reduction – of energy within the body.
As I stated at the beginning of this post, I tried this out on a friend, using the Energy Deficit Crisis terminology and immediately saw an appreciation of the seriousness of my predicament arise in their eyes.
When I went on to explain the scenario of the body taking energy from one part of the body to use in another, I watched realization dawn on their face. They were shaking their head in agreement, thinking about how that would ultimately manifest in my body, and actually started pointing out those issues that would arise from such a deficit of energy in one’s body! They also started comprehending much more clearly, that this was not your garden variety of fatigue, but something much more insidious.
I finally have come to a place where I now understand why the term chronic fatigue is so infuriating to me. It vastly understates and under-acknowledges the problem that is lurking within me.
If one followed the energy scenario to its conclusion, one would have to wonder could there ever be a moment when there was barely enough – or even not enough – energy to run the vital organs of the body? If so, the resulting damage to the body would be profound.
For me, the issue is with the fact that the terminology, chronic fatigue, ignores the domino effect of decreased energy production within my body, as well as, refuses to acknowledge how that domino effect in turn affects the degree and depth of the fatigue I am confronted with on a daily basis, if not an hourly or moment-by-moment basis.
To say that chronic fatigue is a grossly inaccurate term would be the understatement of the year!
The ME fatigue conundrum is not an understanding issue as much as it is a verbiage issue. Words matter and the right words would make all the difference when explaining ME to a world that has no frame of reference to an illness that is robbing millions of people worldwide of the energy they desperately need to engage in their ever day lives.