You Know You Have Crohn’s Disease When You Deal With This Low-Key But Incredibly Frustrating Thing
Not having the energy to do things I love is frustrating, especially when I know the root cause is my disease.
By Abigail Ward
I’m not one to exaggerate, but napping is ruining my life. As I complete the last few weeks of my master’s degree, I struggle to make it through the day without a nap. No matter what time I go to sleep at night or how late I sleep in each morning, I rarely have enough energy to be productive for more than a few hours at a time. I have to pick and choose what I want to achieve each day, because I simply cannot complete it all. My fast-paced, high-achieving normal self has succumb to a schedule that caters to insufficient energy levels.
I have Crohn’s Disease, and over the past couple of years, it has dictated what I can do and when. I’ve dealt with flare-ups, surgeries, finding the right medications, and most recently, extreme fatigue. By far, the most debilitating aspect of my chronic illness as of lately is my lack of energy (fellow chronic illness sufferers out there may know this as The Spoon Theory).
Just as luck would have it, I am experiencing one of my worst bouts of fatigue at a point in my life where I am trying to finish my graduate degree, travel the country, and start my career in public accounting.
I typically write about my disease through a positive light, but there really is no pretty way to paint this picture. Every week day, I wake up, commute thirty minutes to class, sit through a few hours of lectures, drive thirty minutes home, and immediately am exhausted and need to sleep.
If I am lucky, I may have enough energy to stay a few minutes late on campus to finish up some work, or squeeze in lunch before I feel an unrelenting and draining wave of tiredness sweep over me.
I may nap for an hour, I may nap for three hours. When I wake up, I am sometimes just as tired as when I fell asleep. Naps consume my entire afternoon on most days, making it difficult to do anything beyond the bare minimum required of me. You can see how this might pose a problem as I strive to maintain my super-girl mentality and accomplish everything on my to-do list. For example, I am supposed to be studying and sitting for the CPA (Certified Public Accounting) exams, but I barely have enough time in my day or energy in my body to study for my classes. It is painful to sit in a classroom and listen to my peers complain about not wanting to spend the afternoon studying for their upcoming CPA exam when I would kill to be able to do so. I love studying and learning, but recently my fatigue has sucked any pleasure out of my education, forcing me to settle for what I can easily accomplish instead of what I know I am capable of.
My tiredness has prevented me from sticking to my typical workout routine; I have not stepped foot into the gym in almost a month. To some, this might sound like a great thing, but I love to exercise and not being able to do so is discouraging.
Not having the energy to do things I love is frustrating, especially when I know the root cause is my disease.
Anyway, I could go on and on about how I feel like my days are wasting away and sometimes this disease really stinks, but I feel myself starting to complain and that is not the point of this article.
To sum it up, napping is all fun and games until it becomes mandatory. Children hate nap time in pre-school because it is not a choice. Teenagers love napping because it is a conscious decision that they can opt out of if they so choose. When my body decides it has worked too hard in just functioning and needs a quick break, sometimes I do not have a choice to ignore that disappointing message. The past few months have been difficult for me, but have made me realize a few things. If you struggle with disease-related exhaustion, remember this:
- Do not compare yourself to others: Hearing about my classmates passing their CPA exams used to make me happy for them, but also sad for myself. I have come to realize that they are not fighting my fight and thus I cannot hold myself to analogous standards. Despite what I had initially thought, juggling a career as a full-time graduate student while also trying to pass the CPA exams is too much for me, and that is okay. Realizing my limits allows me to set my own standards of success instead of comparing my outcomes to those of others.
- Celebrate the good days: This one is self-explanatory. The days I can go to class and get homework done and still have energy to play my guitar bring me so much joy. This compensates for the days when I sleep my afternoon away. The good days allow me to appreciate minor accomplishments that I used to take for granted, so at least that is a silver lining.
- Compromise: This Fall I have not been able to exercise as much as I normally do, if at all. Instead of letting this setback get me down, I have compromised with myself: I do at least fifty push-ups every morning and sometimes take my dogs for a walk around the neighborhood because that is typically all I can handle. If I can do those things, I have succeeded and am satisfied.
- Investigate any underlying medical explanation: I have shared my increasingly interfering level of fatigue with my Gastroenterologists. After a few referrals, adjustments to my maintenance medications, and several blood tests, the conclusion for right now is that my exhaustion is from my body being under the tremendous stress of a chronic disease that is not quite in remission yet; this is a common occurrence for Crohn’s patients. This answer is frustrating because it does not provide a solution to my problem. I am patiently waiting for the day I wake up full of energy again. Regardless, it is always important to let your doctor know what is going on.
I have endured extreme pain and exhaustion because of my Crohn’s Disease and I personally rank the former as much less devastating than the latter. If you can relate to what I am going through, I am so sorry, but please remember that you were given this battle because you are strong enough to fight it.