When Chronic Illness Feels Like a Downward Spiral

For about two months, I’ve slowly been getting more and more fatigued.  It’s undramatic, yet noticeable.  I’m at the point where I have significantly limited my activities outside of work hours.  My goals are to keep up my healthy rhythms, eat, sleep, go to work, and rest at night.

It’s a hard place to go back to. It’s limiting and requires and embrace of solitude that I don’t really want to face right now.  My limits are even more apparent than usual, inviting me to pay heed to them and rest.  It means facing difficult memories about my illness and coming to rest in a reality that “Everything is going to be okay.”

There have been beautiful things about these last two months: a trip to Omaha, a baseball game after work, early morning walks, reading before bed, an Easter meal at my sister’s apartment, a walk at Eagle Creek, an unexpected card in the mail, a friend bringing me a meal, even though I had to cancel dinner plans.

However, what is difficult about experiencing wonderful memories in the midst of relentless fatigue is the numbness in the body.  I feel as though I’m watching the memory and I’m not truly part of it.  It’s fatigue’s curse.  There’s a sense of disconnection from the body that causes anxiety and a sense of separateness that can be overwhelming.

 

After living with chronic fatigue for the past 10 years, I’m learning to grieve and pay attention to the subtle, mundane ways I feel energy leave my body in a day’s time.  Not for lack of boundaries or overextending myself, or a poor night’s sleep.  Simply because going through life’s tasks can be exhausting.

Some days driving 15 minutes can wipe me out. Sometimes having music on is too overstimulating. Thinking about cooking a meal can put me on edge. Brain fog caused by seasonal allergies can send me to rest on the couch from after work until I go to bed.

I can see though that with each downward spiral, I seem to have more tools to deal with my state of health.  That means that in the upward swings, I have made great strides.  I’m going to yoga and sitting for meditation twice a day. I practice abdominal breathing.  I have a few more people who know and want to learn more about my illness.  I’m back in therapy, working through some intense memories of my healing journey.

Even in these days where it’s a struggle to make it to work on time, I’m seeing my students flourishing, whether I’ve worked with them for 3 months or over a year.  Often, they mirror back to me my own condition.  With dyslexia, “a chronic learning disability,” as one of my students framed it the other day, means that some days reading is harder than usual, for no apparent reason other than fatigue.  Other days it’s easier. Many days I have the eye to see what they don’t.  That they are making small strides.  That their self-confidence has improved tremendously. That they are reading and writing more fluently, even if they still don’t like it. That they are learning more about their strengths and weaknesses and how to monitor their emotional reactions to mistakes they make.  They are learning to persevere and to bring a sense of humor, rather than self-consciousness to the learning process.

If, I take a longer view, I too am flourishing, even though it doesn’t feel like it, or it’s hard to notice.  I’m glad others are noticing for me. I’m glad I work with kids, who remind me daily how to be more childlike. Working with limitations brings out the full range of emotions–and yet I know this reality of honoring my limits, and finding that this is where my strength lies, is a necessary good journey.  The feelings will come in time. But I do want to take notice, express my grief, and be willing to face into the unknown with a quiet confidence, a peaceful mind, and a rested body.

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