Tired face coming out of water and floating.

"Still Tired": Living With Crohn's Fatigue

I feel like "still tired" is sometimes the anthem of my life.

When my Crohn's disease is active, my fatigue can be debilitating. Sometimes I'm forced to stop answering phone calls because I literally don't have the energy to construct sentences. I don't allow myself to drive because it doesn't feel safe.

I'm basically unable to do anything except the bare minimum, and when I come out on the other side I feel like I've been in the deepest fog.

Always tired with Crohn's

After experiencing fatigue like this on and off for quite a while, I began to wonder how I could possibly be SO tired. I was "sleeping" 10 to 12 hours a night and taking a nap during the day. What more could my body possibly want?

I wasn't working. I wasn't moving much. In fact, I wasn't using any more strength than necessary, and yet, it still felt like too much.

Anyone with Crohn's knows that when you're sick, it often feels like more than just stool emptying from your bowels. It feels like life is emptying out too.

Crohn's fatigue and mental health

I found the fatigue affected my mental health, too. It seemed like I was trapped in this awful cycle and all I could do is come up for air between episodes.

During that time, I took prescription sleep medication, worked with a sleep doctor, and underwent multiple normal sleep studies. I even followed suggestions on reducing screen time, creating sleep hygiene, and more. But no matter what, I felt exhausted all of the time.

Sleep versus rest

This was when I learned the difference between being asleep and getting rest.

Being in bed, tossing and turning, waking up during the night – they all impact our ability to achieve deep sleep cycles characterized by faster breathing, a faster pulse, and rapid eye movements, or REM. There were times that my body may have been unconscious, but it most certainly wasn't at rest.

It became clear to me that I had to learn how to dedicate time to conscious rest when I was awake. To be honest, this felt awkward and like something I was embarrassed about. Have you ever sat down to do something like this?

Changes I made to help my fatigue

There were 3 changes I made that over time have significantly impacted my levels of fatigue. I'd really like to offer them as suggestions to anyone who is struggling.

  1. Scrolling through social media, even while laying in bed, doesn't count as resting. When your brain is actively thinking about things you want, need, or are missing out on, it impacts your body's ability to rest. Schedule some breaks to put your phone down.
  2. Guided imagery and meditation are real things that relax your mind and your body. I rely on the Calm app, but there are others out there as well which offer you these services right from your phone. Quieting your brain quiets your body in a real, lasting way.
  3. I also use aromatherapy. Certain scents are tied to physical relaxation. Whether you purchase a linen spray, light a candle, burn incense or diffuse essential oils, or take a bath with bubbles or salts or bombs, aromatherapy draws upon the healing powers of the leaves, flowers, stems, bark, roots or petals of plants to stimulate the natural healing action of both your body and your mind.

If you struggle with fatigue or feeling rested, what are some things that you have found helpful? What are some things that haven't worked for you. How do you deal with still feeling tired?

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