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The Endless Cycle I Experience in Life With Chronic Illness

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This Christmas/Hanukkah (we celebrate both) my family gave me some very thoughtful gifts — pajamas, soft comfy socks, an Apple Watch, a backup battery, cute cross-body purse and backpack. My husband remarked that they fell into two categories, on the go and recovery, and I realized that’s what my life has become. I’m either resting up to prepare for something or in recovery from the exertion required for the something.

The “something” is just life events — weddings, concerts, meetings, an evening with friends. That’s life with multiple chronic illnesses. You live in a constant state of preparation and recovery and often miss out on events because you’re just too sick to attend.

Mostly, people just see the pictures of me and my family smiling at whatever event, me with trusty cane in hand, and they comment about how great I look. They remark about how it’s amazing I’m able to “do so much.”

Amanda at a party.

People see what I show them because we live in a world of social media and reality is what we create. I don’t hide my lupus, fibromyalgia, diabetes, complex migraines, sensorineural hearing loss and well…the list goes on and on from there. I’ve shared many of my intimate struggles through many of my pieces I’ve written here on The Mighty. Some days, I’ll even share a rare post on my Facebook page about a bad pain day or the annoyance of fighting with the insurance company.

But when it comes to the day-to-day realities of life in a flare between events, I’ve chosen to keep that off of my feed. I figure no one wants to deal with a “Debby Downer” on a daily basis. People see the picture of me smiling in my great outfit but they don’t realize I chose that particular jacket because I knew that the long sleeves would hide the bruises from the latest stay in the hospital. (Personally, I think if you’re going to be stuck with lots of diseases that require lots of blood draws you should at least be given good veins!  It’s only fair!)

People don’t realize the long jacket helps camouflage the very swollen belly, another gift from the increase in prednisone, the steroid frequently used to help control the symptoms of auto-immune disease. Oh, and the gastroparesis that means I won’t digest anything I eat at the event in a timely manner, so my stomach will swell even more throughout the night. I need to make sure the outfit can accommodate that as well. And the material needs to be incredibly soft since my skin is so sensitive that many fabrics actually hurt when they touch me.

Layers are crucial, as autonomic dysfunction makes my temperature fluctuate ridiculously. Comfy, sturdy shoes are a must since my balance is iffy on a good day.  Add a bunch of people and I need as much help as I can get to stay on my feet. Hair and makeup have been carefully crafted to hide thinning spots, dark circles and the lovely “butterfly rash” that can painfully flush my cheeks and nose. But I looked great, right?

Then comes the inevitable crash no one sees. Well, no one but my family. When my husband or one of my children have to help me from the car to the house. When my husband has to help practically carry me up the stairs, undress me, dole out my bedtime meds, remove my contacts, makeup, set up my CPAP (for sleep apnea) and tuck me into bed. He knows tonight will not be a restful one for me. The painsomnia will make for a night of agitation and rough tossing and turning trying to find some comfort. He will take the couch, leaving me the bed — again.

I’m tucked into those soft comfy PJs for the recovery phase. Sounds glamorous, doesn’t it?  Just lounging in your pajamas in bed, curled up with a good book, Netflix? How can I complain about that? I have a master’s degree, yet today I struggled to finish reading an article in People magazine because the brain fog and mental fatigue were too strong.

Amanda resting, cuddling with her dog.

In recovery mode, there is no joy in rest. Rest is about survival. Rest is bingeing episodes of  a show on Netflix yet having no recall of what you watched because you just have it on as a distraction; your exhausted brain can not comprehend plot, characters and dialogue. Rest is eating whatever is easy, handy and doesn’t require much effort. In recovery mode, I find myself mindlessly scrolling through Facebook and Instagram and watching the world I used to be a part of passing by me.  The world doesn’t stop just because I do. As much as I remind myself that it’s OK it still hurts to know that I’m 46 and unless some major medical discoveries are made soon, this is my “new normal.”

I see everything else my friends and family my age and older are accomplishing and feel left behind. There’s a profound sense of loneliness that comes with recovery mode. One day can slip into a week as it’s time to pay the price for the fun of the event. Those once-comfy PJs can start to feel less like comfort and more like another accessory of the sick.

Slowly, the energy begins to gather, the fog dissipates a bit and I can start to prepare for the next event.  And the cycle begins again.

Originally published: February 26, 2020
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