I’m Tired of My Chronic Illness

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I’m tired of days like this. Days when chronic pain from erythromelalgia makes it nearly impossible to think straight. Days when the hours blend together, and I feel like I’ve wasted an entire morning, afternoon, and evening. Days when I wonder how long until I can take my next dose of pain meds. Days when I can’t shower or make lunch or water the houseplant that’s drooping so much that it reminds me of myself.

I try to explain this feeling to my wife and children. I know they understand, but I feel like they’ll eventually get tired of my complaining and laying around. My friends graciously reply to my texts, but I know they have their own difficulties to deal with.

So I shout into the abyss of Twitter. Compassionate people often reply with encouraging and reassuring words. But sometimes I wonder if people who see my Twitter feed think I’m a drama llama desperately seeking sympathy. Munchausen-by-Twitter.

I’m deep-down-in-my soul tired. So I pray. A lot. Sometimes during an especially intense flare (like this afternoon) I ask God to remove the pain and suffering. I try to make those prayers like Christ’s in the Garden of Gethsemane. “Let this cup pass from me; nevertheless, not my will but yours be done.” But they usually come out, “Dear God, please make it stop.”

My prayers usually consist of a morning offering when I present my day to God. “I offer you my day: the joys and sorrows, the pleasure and pain, the good and bad.” I also ask God to sit with me when the pain spikes and to unite my sufferings with Christ’s and those of others. I feel that this is my small way of practicing compassion.

Still, it’s hard for me to accept this is who I have become — a person in constant pain, a pain that I have trouble describing. Electrical shocks travel from the bottoms of my feet through my calves into my thighs with nearly every step. My soles feel like they are dipped in coals. My shins feel shattered, and my ankles feel bound. A constant vibrating sensation pulses through both legs, and a gripping, vice-like sensation squeezes my calves and thighs.

The pain from erythromelalgia limits what I am able to do. I spend most of my days on the couch with my legs up because the burning sensations typically increase when I walk or my legs dangle.

Do other people with chronic pain have these days?

I assume they do, but I’ve never really met any. And would it make a difference?

St. Francis prayed,” O divine Master grant that I may not so much seek to be consoled as to console, to be understood as to understand.” Still, I wonder if anyone understands. My physicians listen in their professional way, and I have found essays from other chronic-pain patients on The Mighty and Disability Acts. So I know people comprehend the pain, mental distress, and uncertainty.

I’m certain many people face difficulties more severe than I could even imagine. But comparing pain is foolish. Everyone’s suffering is unique unto themselves.

I’m mostly tired of thinking of myself. The intense and relentless pain forces me to limits my range of attention. I can’t get out of my own headspace, and my excessive use of the first person singular is maddening.

I’m especially exhausted today, and the fatigue exacerbates the pain and self-focus. As St, Paul laments in Romans 7, “For I do not do what I want, but I do the very thing I hate…Who will deliver me from this body of death?”

And as I took a break from writing, I stumbled across a Washington Post column from Michael Gerson that might help. His poignant elegy on depression resonates within me.

“Even when strength fails, there is perseverance. And even when perseverance fails, there is hope. And even when hope fails, there is love. And love never fails.

So how do we know this? How can anyone be so confident?

Because we are Lazarus, and we live.”

I simply have to trust that love will deliver me. That doesn’t mean I harbor false hopes that I will ever feel any better, stronger, or less selfish than I do right now. Instead, I believe love in the presence of all who are good, kind, and generous will ultimately pull me out of myself regardless of any pain.

A former elementary educator with a physical disability. @disabledsaints

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