Chronic Fatigue is Hard to Explain

Living a misunderstood life can be lonely.

It’s hard to communicate what it’s like living with chronic fatigue. Over the last 14 years, I’ve found that 0% of the people I share with ever truly understand. It’s something you have to experience to comprehend.

It’s difficult to explain the effects of constant pain and fatigue. Feelings get hurt. Self-esteem gets damaged. In the end, no one really gets me.

In some ways, I’m glad they don’t understand. I would hate for any of my loved ones to experience this reality to the point of empathy.

Being misunderstood does leave me feeling lonely sometimes. Everyone wants to be heard.

So I’m going to tell you about it.

Energy Expenditures Come With a Price

The end of summer always sneaks up on me.

We were one week away from the start of a new school year. I am a homeschooling mother of 3 and this is my busy season! While my kids enjoyed one last week of summer break, I went into planning mode.

My to-do list was a mile long. Not only did I need to be ready to start school, but I also still needed to get to those unfinished summer projects before school consumed all my energy.

Should I have just let those projects go? Probably. But I didn’t. I decided to paint my kids’ bedrooms.

To most people, this isn’t a big deal. When you live with 10% of normal energy, it becomes a huge deal.

All energy expenditures must be accounted for.

There’s a whole theory devoted to explaining this issue. It’s called Spoon Theory. Here’s a summary from Wikipedia:

Spoons are a visual representation used as a unit of measure to quantify the amount of mental and physical energy a person has available for activities of living and productive tasks throughout a given amount of time (i.e. a day or week). Each activity requires a number of spoons, which will only be replaced as the person “recharges” through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.

This might sound relatable even without chronic fatigue. Everyone gets tired, right?

What is difficult to understand is the limited number of spoons. Even the energy to shower in the morning and get dressed has to be accounted for. Can you imagine needing to rest after taking a shower? I can.

There is no pushing through when you hit the end of your energy. If you use up tomorrow’s spoons, you might be in bed for a week recharging.

This is chronic fatigue.

Finding Balance

I have four options in life:

Option #1 — Avoid life to avoid triggering a flare-up. Use my energy for minimal household tasks only. Miss everything fun.

Option #2 — Enjoy life when I can, then spend copious amounts of time in bed recovering. In the meantime, nothing gets done.

Option #3 — Use up so much energy worrying whether an activity will make me flare, that I make myself flare. Anxiety requires energy.

Option #4 — This is the well-balanced one. I’m still looking for it. When I find it, I’ll let you know.

The most challenging part of living with chronic fatigue is finding a balance.

If I spend all my limited energy on necessary life tasks (cleaning, cooking, laundry, etc.) I’ll quickly become depressed. Life is for living — not just cleaning!

On the other hand, if I use my energy frivolously and don’t keep up with those necessary things, I will feel like a failure. I’ll be embarrassed to have anyone over to my house.

I don’t have enough energy to do both, so I have to find a balance.

In order to enjoy life, I have to sacrifice some of the chores in exchange for live-giving moments. This is a difficult choice to make. Chores have to get done, but mental health needs to be maintained. They are both necessary.

For example, yesterday’s rare burst of energy was already budgeted for a final declutter of the school area and last-minute planning and supply shopping. Not painting bedrooms.

Painting might not be the best example of a life-giving opportunity, but this is where I am this week. Getting ready for school is necessary. Painting is an unnecessary bonus.

Accepting the Consequences

When I choose fun over necessity, I have to be prepared to deal with the consequences. Often, the necessary never gets done. Tomorrow’s energy will be needed for tomorrow’s issues. I don’t have any emergency energy savings.

If I’m not kind to myself, this can leave me feeling like a failure.

When you come to my house and see things in disarray, it’s not because I don’t want to tidy up. It’s not because I don’t see that my baseboards need a fresh coat of paint. I’m aware the dishes are waiting to be done.

I see it. I just don’t have enough energy to fix it. I’m trying really hard to overlook it and get on with my life and I wish everyone else would, too.

My self-esteem is already suffering. I don’t need judgment, I need understanding.

Enjoying life is sometimes more important than pulling weeds. With chronic fatigue, you have to choose one or the other. You can’t do both.

The important thing to understand is this:

I am valuable, even with dirty dishes.

Anxiety and Chronic Fatigue

If I were a cartoon character, anxiety would be my arch-nemesis.

Living with chronic health issues is tricky enough. I feel like a tight-rope walker in the circus. I’m trying to keep the balance between what’s fun and what’s necessary, without running out of energy. When suddenly, anxiety comes at me like a flaming baton.

One frequent source of anxiety is clutter. Despite my best efforts to be an organized minimalist, I don’t have the energy to keep my home in order. I have slowly decluttered and organized every area of my home more than once. It takes years. And it never lasts. (Did I mention the husband and kids?) This is something I just can’t control.

Clutter triggers anxiety. Anxiety makes me feel out of control. Lack of control leads to panic. Panic steals my energy. It’s a terrible cycle.

Once the energy is gone, I can’t do anything to fix the problem. On my worst days, it can leave me feeling helpless.

But they are not all bad days. The longer I walk this path, the more I’m learning to control my response to the circumstances that are outside of my control. I’m learning to focus on what I can control. Bad days are declining and good days are increasing. I have hope.

Life is Still Good

Chronic fatigue is a life-changing health issue, but life is still good. It doesn’t change who I am or what I’m worth. My response to the world around me is still entirely within my control.

My world has become smaller as I’ve learned to prioritize what matters. Family and friends matter. Life-giving activities matter. Having clean underwear matters.

I’m learning to drop less important things and enjoy the things that make my life better. That goes for people, too. Some people bring goodness into my world, others don’t. I have to be choosy.

Focusing on becoming a person who brings goodness to others has made my life exponentially better. Learning to focus on what I can control, reframing anxious thoughts, and finding more peace in my life is making a big difference.

I am tired, but I am loved and I am happy.

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