When your brain says rest, rest, rest…

In my ongoing research (which basically means searching the internet often when I can’t sleep), I stumbled upon an interesting piece about chronic fatigue. Actually, one of many. But this one stuck out. A rheumatologist explained how brain differences in immune-deficient patients suggest that chronic fatigue isn’t a muscle issue—it’s a signaling problem. Basically, the brain is sending out an all-points bulletin that says, “Take it easy. Stay in bed.”

He explained it like this: When you have the flu and can’t seem to drag yourself out of bed, that’s your brain sending signals to force you to rest so your body can recover. In patients with immune disorders (like me), they found that certain proteins in brain cells were acting like they were fighting off an infection—except there was no actual invader. The brain was essentially tricking the body into exhaustion mode for no apparent reason. Great. Just what I needed—an overprotective brain that can’t tell the difference between real danger and a false alarm. (Wait, did I just hear my mom?)

This led me to another article about a participant in the study who took her own life because she couldn’t cope with the pain of chronic fatigue. That hit hard. Because unless you’ve lived it, people don’t realize how soul-crushing fatigue can be. It takes more strength to even do things you enjoy.

My Main Energy Drain:

One of the most intense side effects I deal with—on top of the endless fatigue—is coughing up mucus all day, every day. I mean, people complain about coughing for a week when they have a cold. Try doing it 24/7, 365 days a year, for 58 years, and then tell me how exhausting it is. The amount of energy it takes just to clear my lungs is insane.

When I get hit with an exacerbation of the constant Pseudomonas infection in my lung and/or COPD that I now have, the exhaustion turns into actual physical pain. It’s like someone is forcing me to stay awake when all I want to do is collapse. And when I’m sent home from the hospital with IV meds, even something as simple as switching out the medication bag feels like it takes an entire day. And I can’t rely on any alarms—In the middle of solid rest, I can sleep through just about anything—except my husband’s snoring and a tornado warning. Both launches me out of bed.

Lately, the fatigue has been even worse. And the cruel irony? Being so tired that I literally can’t sleep for days. It’s a terrible cycle, and as I get older, it takes longer to get back to my "not-so-normal, normal."

Deconditioning Woes:

Let’s briefly rule out any significant diet culprits...

Alcohol? Nope, don’t drink it.

Coffee? Never liked it.

Too much Takeout? Our artist budget doesn’t allow that luxury often.

Coca-Cola? Now, that’s a complicated relationship. I can go weeks without it, then suddenly I’m drinking one every day, maybe two. I know it’s not helping my fatigue, but let’s be real—it’s not causing this level of exhaustion either.

Now, let’s talk about deconditioning—the dreaded backslide after long hospital stays. I used to hit 10,000 steps a day 4-5 times a week. Now? I struggle to reach 2,000. With less than 40% of my lungs left, regaining physical strength feels like climbing a mountain with no oxygen (which, coincidentally, is pretty accurate).

And here’s the ‘beatdown’ kicker: My lungs are drowning me in mucus. The body naturally produces mucus to trap bacteria and clear out infections. The problem? My cilia (the little hairs that move mucus out of the lungs) are completely paralyzed. So instead of getting rid of the mucus, my body keeps making more because my brain thinks I’m still sick. So, instead of being a protection mechanism, it is suffocating me.

The Takeaway: A Brain that will NOT rest!

So for anyone out there dealing with a chronic physical condition, it might actually be a signaling problem with your brain. Your body could be screaming at you to REST, REST, REST, when what you really need is to fight to stay active. And with me, I don’t know if I need the rest for real since I’m sick every day of my life. Do I keep charging on, potentially making my situation worse, or do I stay in bed, potentially making it worse?

It’s a battle. And some days, it feels like I’m losing more often than not. But even when my body is telling me to stop, I know that pushing forward—even just a little—is the only way to keep going. I know it’s hard. I get it all too well.