By Madora Pennington, PNN Columnist

Like much of the world, I am self-isolating to slow down the spread of the coronavirus. As a medically fragile person, I am afraid. My immunity is poor. I get frequent lung infections and I get them fast, without warning. Would I get a bad case of Covid-19?

I can imagine my death in the ICU, without family, on a ventilator, under protective gear. It’s easy for me to reconcile myself to this possibility, even accept it. I was born with Ehlers-Danlos syndrome, which prevents the body from making proper collagen and causes a host of other health problems.

I am an expert at homebound isolation. I did it for many years, too sick and in too much pain to function. My only job was to survive another day of agony and not lose my mind. Seven years ago, experimental treatment overturned my life sentence of pain and I was freed from my prison of disability.

I sheepishly admit isolating myself from the coronavirus is a lot more fun. This time, I am not sick. Even better, I am not alone. We’re all in this together.

My old life was awful, but it was simple. I had a schedule with targets to accomplish, which may seem laughable to someone who has not experienced prolonged severe illness. Shower, water a plant, unload the dishwasher.

I awoke in the morning, feeling lucky if I got a good chunk of sleep, and resentful if I did not. My spine was so fragile, the pain of laying down on my bed led to torturous spasms. I took morphine, Vicodin and carisoprodol in hopes of falling asleep before the pain hit and hoping to stay asleep after it did. The drugs worked about half the time.

My husband was careful not to wake me as he got ready for work. Up alone, swimming slowly through the thick liquid of my morphine hangover, I faced my favorite part of the day: the bitter warmth of coffee and a view of the city.

In my old life, I lived for simple pleasures because that was all I had. Food was one of them. Cooking dinner every night. Brunches on the weekend. I felt deep appreciation for the times when my pain or my brain fog wasn’t so bad, the times when I had a little energy. I dreamed that one day I might get better.

This was before Facebook, before podcasts, before medical information was freely available on the internet. Life was lonely then, but we didn’t know anything else. We kept my struggles private. No one except my doctor knew how sick I was. That gave me a sense of dignity, as a genetic disorder is so difficult to explain. Better not to, I thought. Besides, the hopelessness brings other people down, and that’s just impolite.

We lived in a one-bedroom apartment because I didn’t have the strength to get around anything bigger. I made the bed. I took walks every day. I fought to take care of as many of the household chores as I could. There was something monastic, perhaps even spiritual about my old life, a life where I spent most of my time alone.

When I got better and exited my sickbed, my life became unbearably complicated. Drug withdrawal, integration into the world, working and building a life. I was, I shamefully admit, deeply depressed. Adjustment Disorder is an emotional disturbance one goes through while adapting to the stress of significant life changes.

Stay On a Schedule

It’s been an easy transition to coronavirus self-isolation. I remember what worked from my old homebound life. Be on a schedule. Every day do this, and then that. Shifting from one task to another makes the day seem fuller. I like to lift some weights when I get stuck writing. Or maybe scrub the kitchen sink. Jump up and fold the laundry. Reorganize something, even if it’s just one drawer, for a quick sense of satisfaction.

Commit to regular meals, as opposed to all day snacking, so you won’t go back to work with clothes that don’t fit. Get sunlight on your face, as early in the day as possible. I hope you have trees or grass or sky to enjoy. They positively affect mood.

Make your bed and stay out of your bedroom. Sleep is a conditioned response. If you lay in bed while reading or watching TV, you send your brain confusing signals about when sleep time is supposed to be. Bedtime rituals help get sleep hormones flowing. Follow the same pattern every night.

Talk on the phone or even better FaceTime or Skype with friends so your brain can have the satisfaction of mirroring and the stimulation of responding to another human’s emotions. Accept your humanness, that you don’t have much control over your life and never did.

There is so much stimulating content now, from streaming services to podcasts, Kindle and audiobooks, ways to feel part of humanity and not so alone. Type your thoughts and feelings into a journal to help process and keep them moving.

My coffee ritual is still my favorite part of the day. It’s reliable and always there for me. I stocked up on great coffee, anticipating society shutting down, along with spam and popcorn, cold medicines and laundry detergent.

You can go outside for a walk, if not many people are around. Walking is relaxing. Gently swinging your arms as you go relieves back pain. My husband and I strap on weights and walk the neighborhood. We wave to our neighbors, most of whom are also living homebound isolation. We stand far apart as we chat.

“Let me know if you need anything,” I say. “I’ll disinfect it and hurl it over to your yard.” They agree to do the same.

Madora Pennington writes about Ehlers-Danlos and life after disability at LessFlexible.com. Her work has also been featured in the Los Angeles Times.