What Tired and Fatigued Really Mean to the Chronically Ill |
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A lack of stamina goes hand-in-hand with chronic tiredness and fatigue.
The chronically ill often have to use adrenaline to get through necessary tasks.
Ongoing tiredness and fatigue takes a mental toll on the chronically ill.
Equanimity is the key to living well with chronic illness.
I’ve been chronically ill with what I call “the flu without the fever” for close to 25 years. Today, I’m called a “long hauler” because I never recovered from a virus I caught in 2001. It cost me my job and the ability to travel. I’m pretty much housebound.
I’m certain that those of you with illnesses or pain conditions (I have both—chronic illness includes pain) have encountered people who say things like “I’m tired too.” It’s hard not to get angry when you hear that because “tired” and “fatigued” mean something entirely different to us. A person who is tired or fatigued feels better if he or she gets several good nights’ sleep.
By contrast, if I sleep eight hours, days in a row, I’m still tired and fatigued. It goes with my illness.
I thought it would be instructive to list what many chronically ill people mean by the words “tired” and “fatigued.” I just gave one example—a good night’s sleep can still leave us feeling as if we haven’t slept in days—but here are some more. (From here on, I use the word fatigued.)
We Often Have to Rely on Adrenaline, Which Comes with Payback
Not surprisingly, fatigue is accompanied by a serious lack of stamina. This means that activities that others can engage in for hours—socializing comes to mind—take their toll on us after only a short time, perhaps 30 minutes or even less.
Some of these activities are “have to’s,” such as doctor appointments. When we find ourselves in situations where we cannot stop and lie down, we are forced to use adrenaline to get us through.
That sounds like a positive thing, but it’s not. When I have to use adrenaline, it means there will be payback in the form of “crashing” when it wears off. This can land me in bed for days, depending on how long I have to rely on adrenaline. The need to use adrenaline is one way in which being fatigued differs for the chronically ill.
Our Bodies May Tell Us, “Sit or Lie Down Immediately!”
When I start to feel fatigue, my body wants to lie down right where I am, whether it’s on the floor or even on the sidewalk.
I did something similar a few years ago when talking to a neighbor. She was having trouble with a contractor and saw me outside. She came over to seek my advice. Her story went on and on. I hit my limit and sat right down on the sidewalk! I apologized but said we could continue to talk, but that I’d have to sit.
Being fatigued also means that it can come on suddenly; it triggers the need to sit or lie down. I’m sure others have had to do something similar to what I did on that day.
Chronic Fatigue Takes a Mental Toll
Ongoing fatigue doesn’t just affect our bodies. When the body is “out of gas,” so is the mind. It can be hard to think straight to carry on a coherent, articulate conversation. This can be embarrassing. In addition, once fatigue sets in, we can hear what someone is saying but struggle to make sense of it. Another source of embarrassment, that’s for sure. This mental fatigue is often referred to as “brain fog.”
Feeling fatigued also means that our minds feel the same way. This is so hard on us—to be talking to people but not being able to understand them, or, if we can, not being able to respond coherently and articulately.
Fatigue Can Intensify Because It’s Always on Our Minds
It should come as no surprise that the chronically ill get frustrated and, at times, feel just plain fed up with their situation. I’ve found that being fatigued day after day can make my condition worse because of my adverse mental reaction to it. Put another way, I’m tired of being tired.
What Is a Chronic Illness?
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One example. I’m tired of not being able to be spontaneous in my life. I always have to plan how I’m going to budget my time so as not to reach that critical mass where fatigue makes it impossible to go on unless I use adrenaline (with payback coming later).
I’m working on developing some equanimity about how my life has unexpectedly unfolded over the past 25 years. And so, I ask myself, “What can I do to make it a life of quality and purpose despite my ongoing illness and the fatigue? At various times, I’ve taken up embroidery, crochet, and even painting with oil pastels because they don’t require water. All of these have been tremendously helpful because they've given me a short respite from focusing on the illness and the fatigue that accompanies it.
I hope my examples of what the chronically ill mean when they say they’re tired or fatigued have been instructive to those who don’t suffer from chronic illness. I do know that often people who are chronically ill don’t share this with others. They find it easier to say “I’m fine,” even if their bodies are burning with pain. It’s easier because we know that others won’t understand our explanations.
A final takeaway is that when you meet another person, don’t assume that all is well. Chronic illness and chronic pain are almost always invisible to others. When talking to people, look for signs that they’re getting fatigued and change the interaction accordingly. They will appreciate it so much.