• Rhonda, Reinventing

Chronic Illness in the Time of COVID-19 or COVID-19 in the Time of Chronic Illness

Updated: Apr 23


I never thought my lifestyle was trend-setting, before COVID-19.

Millions who live with conditions such as fibromyalgia and ME/CFS (chronic fatigue syndrome) know how to shelter-in-place. “For years, [we] have been working and doing advocacy from home, practicing physical distancing, and sometimes even practicing self-quarantining just to survive”. (https://solvecfs.org/covid-19-and-the-me-cfs-community/)

My illness is fibromyalgia, which is not an auto-immune disease, despite frequent mislabeling. My immune system is not eating me alive; my treatments are not immune-suppressing agents. So my risk regarding COVID-19 is no different from that of other reasonably healthy people of my age.

Why Protect Myself More?

Why go out of my way to protect my health? Because adding pain, stress, fatigue and/or discomfort on top of my fibromyalgia crushes me. When I have the common cold, I suffer like a normal person does with the flu. When I get the flu, I start reviewing my will.

Getting COVID-19 would trigger my fibro symptoms. On top of the respiratory and other effects of COVID-19, I would be assaulted by shooting and sharp pains, throbbing aches, sleeplessness, brain fog, fatigue, vasovagal attacks (dizziness) and irritable bowel syndrome. Then that fibro flare up would trigger another one, treating me to more rounds of the same.

Everyday Constraints

I no longer show up somewhere to work. I accomplish one major thing within the 5-10 functional hours I eke out of most days. That might be taking a drive, editing a few pages, going food shopping, doing gentle yoga or a few hours’ writing, or making it out to a meeting, concert, celebration, dinner date or a movie. Around that activity, I choose which everyday task(s) to attempt: Wash my hair? Make a phone call? Do paperwork? Learn about something? Heat up dinner? Change the sheets? Shop online?

I handle many tasks via phone and laptop keyboards. I do without. I cancel plans. I usually RSVP no. I avoid unwell people like they carry the plague. Most of the hours of most of my days are spent in resting and in solitary endeavors.

COVID-19 Lock-Down and Fibromyalgia

This lock down is, maybe, 15%-20% more isolating than my ordinary life. You know that frisson of anxious anticipation you now get as you dress for an outdoor walk or your bi-weekly supermarket visit? That’s my life every day. I have at the ready an array of coping mechanisms and silver linings that might help you develop your own.

This blog is not meant to imply that everyone’s world is just like mine. People with fibromyalgia or ME/CFS who raise children and/or work full time experience many additional frenetic, enervating elements in the daily struggle to rise above one’s own pain, fatigue, depression and anxiety for the sake of others.

I am not locked in with unsupportive or inconsiderate people. In those cases, proximity can make interpersonal friction relentless, and when there’s any violent edge to it, that is terrifyingly likely to erupt. Hotlines and resources like tele-therapy are being promoted for those at imminent risk of emotional or physical damage. See https://www.thehotline.org/help/ (domestic abuse) and the COVID-19 Mental Health Resource Hub at https://psychhub.com/covid-19/ , or the telephone, Zoom and other virtual meetings of an addiction support community such as AA, NA, or OA.

What Helps Me Not Despair in Isolation

Maybe these ideas can help you adapt to this shut down a bit more quickly than I did to my fibromyalgia-imposed one.

Being alone need not equal being lonely. Despite reframing alone-time as a gift to myself, I can feel too isolated. Lonely. Sometimes, I simply let the feeling wash over me. But when the loneliness strengthens from something I notice to something that begins weighing on me, I take (gentle) action:

● Sometimes,when I think I’m lonely I’m actually under-stimulated. If switching from a passive activity to an engaging one like reading a good book, writing a poem, singing along to music I enjoy works, then boredom was the underlying problem, and I’ve solved it.

● Sometimes, I get onto social media. I respond to people’s posts and write my own.

● When Facebook backfires and increases my sadness in isolation, I’ll visit a site or group that feels more personal (I am in several groups where there is one common focus and politics is excluded).

● I might call someone I love. If I don’t have the strength for a conversation, I'll start a text exchange. I have an email “pen-pal” from one of the specific groups, and we write each other letters (longer than texts) about our lives. With a heightened need for human contact during the COVID-19 shut down, we leapt to speaking on the phone. It won’t replace letter-writing, but it soothes the special worries of the time, and deepens our connection going forward.

● When immediate contact with others is unavailable, I daydream-remember a time of feeling great love and connectedness. I have a selection of memories that I roll like favorite films and treasure like fantasies. They satisfy me and lighten the blues.

Physical blahs can lead to the blues. Laying around too long brings on a yucky feeling in my body that becomes a negative emotional state. These are low-commitment tricks I use to turn that around:

● I’ll take a shower that starts warm and ends cool. If I’m too weak or dizzy, I’ll kneel on a folded towel and wash my hair, again starting with warm and ending with cool.

● If it’s cooler out than in, I’ll open windows to exchange the air.

● I’ll stream familiar upbeat music, moving and singing to it if I can, or simply resting and listening.

● I’ll stand, sit or lay on the yoga mat (it’s always out and ready) and do five minutes of whatever I can give. I might sink into Ragdoll or hold a seated squat (my favorite resting-stretch pose). With more energy, I might use resistance bands to loosen my hips, perform a few active squats or take some gentle dance steps while humming to myself. The goal of the exercise is the mood shift, so I do what I feel like without any guilt or pressure.

● Considering what I’ve consumed that day, I may balance things out. An icy glass of seltzer if I’ve been drinking too much coffee. Fruit or plain salad greens if I’ve eaten dense foods like oatmeal, beans and meat. Water with lemon juice or cider vinegar after eating fats or simple carbs. And I am refreshed by guzzling cold water or seltzer when feeling dehydrating.

The goal in each instance is to lift my mood by changing up my body’s experience: no guilt, regret or self-flagellation allowed.

Sometimes we need a smack in the head to look up. With my life barreling along at an unsustainable pace, I responded by pedaling harder and faster. The world around me was not cooperating. I was angry that my efforts at success in life, relationships and work were failing despite increasing sacrifices.

Being stopped in my tracks felt terrible, unfair and even immoral. Over time, I began to see light between what I wanted to do and what I was doing in a race for accomplishment, accolades and success. I depleted my strength over years. I refused to notice the connection between running my body down and making poor choices with less balance and diminished results.

Now, instead of saying, “Damn this disease, it lets me get so little done,” I’ve learned to say, “I am grateful for the constraints of this disease, whose only truly effective treatment is to decrease stress and increase joy.” Without fibromyalgia knocking me to the ground, I would not have slowed down. I would have run away from difficult decisions to weed sources of stress out of my life. I would not have come to view resting as my birthright and a pleasure.

Today, I choose activities that satisfy my need for purpose, bring me pleasure and don’t overwhelm or trap me. They open up frequent opportunities for joy. As a poet, this simile comes to mind: Crafting a life with fibromyalgia is like writing within the structure of a Haiku: The tight framework invites me to craft something of pristine beauty.

Finally, Why be Kind?

The more understanding I am to myself, the better my mood and the better able I am to be positive, creative and even a bit constructive during isolation. The more demanding and judgmental I am of myself, the less I end up accomplishing.

Can you give yourself that kindness? Pry loose self-judgment’s grip?

Can you begin reframing the COVID-19 isolation from a constraint you resent into one that challenges you to distinguish between stress-inducing elements of your life and those that increase your joy and fulfillment?

Find something that you very much want to do, that is also possible to do while shut in. Go ahead and do it. You may find that your mental state begins to shift toward joy and away from stress.



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