Living with Fatigue and Ulcerative Colitis

After living with ulcerative colitis for over three decades, I’m so tired of being tired. On some days, it feels like a herculean task just getting up out of bed. It also feels like I haven’t slept at all. These are the days I have to talk myself into surmounting the invisible force that feels like a weighted blanket covering me from head to toe.

“Push. Push. Push yourself up. Take one step at a time. You can do it.”

This is how the typical pep talk sounds rolling around in my head on days when fatigue is telling my body otherwise.

What UC fatigue feels like

I know the bone-deep feeling of exhaustion. It lives hand-in-hand with my IBD and rears its ugly head with greater force when my body starts into a flare. Moving from the bed into the next room can be a daunting task. And believe me when I say on these mornings, no amount of energy drink can conquer this boulder-like weight.

But outwardly I look fine. Other people — even my own spouse — don’t understand when I tell them how tired I am. So, let me try to capture it here in words:

Fatigue sinks its teeth deep into my muscles. I literally ache when reaching upwards with my arms or when I take steps. This makes it challenging to perform simple tasks such as getting dressed and brushing my teeth. It fogs my brain and causes me to continually ask “What?”

Also, it hinders me from finding certain words that I know, but that I just can’t access in a given moment. Overall, I feel like I’m slogging through quick sand in conversation or while doing menial tasks like walking up or down stairs.

The emotional toll of UC fatigue

Because of its heaviness, fatigue takes its toll not only physically but also emotionally. On some days, I don’t want to move beyond the bed or couch. The motivation just isn’t there. On other days, I don’t enjoy activities that I normally would love. This emotional toll frustrates me and leaves me crying. Why can’t I do what I want? Why do I have to carry such a massive weight on my shoulders?

As a public school educator, I can vouch that fatigue interferes with my ability to do my job. It zaps my enjoyment of teaching young people. On certain days, I just want to cocoon at home. But that’s not always possible.

So, I repeat my pep talk to push my way through this invisible force.

Signaling a flare?

Over the decades of living with UC, I’ve noticed that worsening fatigue signals the onset of a flare. I didn’t realize it for probably the first twenty years. I guess I’m a slow learner. Now that I’m older and wiser, I see how the painful build-up of exhaustion communicates that my body is trying hard to fight off the UC attack.

Once a flare begins, my body tries with all its might to fight the inflammation in my colon. But that leaves the rest of my body void of energy. As the abdominal pain starts, the next step is usually mucous and blood in my stool. At this point, I understand why I feel so exhausted. It also explains why I haven’t been able to sleep well.

A-ha! My colitis is flaring. And that’s when I start worrying. I start overthinking how bad the flare might become. What kind of medicine will I need? Will I have to go on a round of prednisone? Gosh, that makes me crazy, and I can’t sleep when I’m on prednisone. So many emotions wash over me whenever I make the connection of fatigue and a flare. The constant anxiety of a flare can be all-consuming.

My valuable lesson

At this point, I’ve learned that I must shift my thoughts. Taking care of me instead of others becomes a priority. Sometimes, I take sick days off from the classroom to let my body rest. When I do, I focus my energies on deep breathing and meditation. I make sure I eat plenty of healthy foods that won’t worsen my UC flare, and I make sure I force myself outside to walk.

But why not just rest in bed on these sick days? Friends and loved ones might suggest the “lie down and recover” method. I choose another approach.

You see, over the years I’ve learned a valuable lesson about health and wellness. That lesson is “movement is medicine.” And I’m a firm believer that movement in nature is even better medicine for the body. Yes, walking might stir up the digestive system, but I always make sure I stay close to the house for bathroom breaks.

Sometimes, I just literally walk around and around the house. On rainy days, I stay on the covered wrap-around porch and do my loops. On nice days, I walk just outside the perimeter of the porch. Always staying near the bathroom. That is how I have tweaked my “movement is medicine” prescription when my UC flares are raging in full force.

On the days that my flares are tamped down, I venture farther out. But I live on a farm with plenty of space to move. For those living in urban areas, I would recommend finding your own version of “movement.”

Pushing through the fog

Yes, fatigue is challenging and hard. But for me, lying still within the fatigue feels worse. It creates more pain within my body.

So, as hard as it might be on certain days of slogging through the muddy mire of exhaustion, I push and push until I make it outside. That might take me multiple attempts, but my resolve is firm. Besides, my dog always joins me on these walks, and she is just like icing on the cake for my soul. She calms me and reassures me that I can push through the heavy fog of fatigue.

As I close, I want to confess that today was a struggle for me. Even the simple act of writing this article has zapped my energy, leaving me feeling depleted. How did I make it through? I pushed myself to get up every 10-15 minutes to make a trek up and down the stairs. It isn’t easy. I don’t claim to anyone that I hold the magical key to overcoming exhaustion. I don’t. I’ve just learned ways of coping with it.

How do you handle the weighted blanket of fatigue? Please share your ideas. You might just help someone else.