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My Response to 'What Do You Do All Day?' as a Chronically Ill Woman

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woman in bed

As I lay in bed scrolling through the emails of the morning, I may look like any other 29-year-old starting her day.

But Lyme disease has made it clear these are not ordinary days. There is no healthy normal, no magic “feel better” day right now for me. There hasn’t been for years.

I’m lying here, giving my body the space it needs to prepare for my next routine of the morning: migrating to the couch.

My right big toe nail feels like it’s on fire today. I gently rub it against the sheet as if that’ll put the “fire” out. My joints ache, and my ears are ringing with a high pitch tone only dogs should be able to hear.

The muscles in my legs tense and spasm as if I’m flexing them even though I’m doing nothing. My head feels as if it’s been used as a bowling ball all night.

I breathe deep breaths and remind myself I don’t have to move until my body is ready.

This is not a “bad” day for me. This is my norm. I’ve learned to deal with it, knowing I’m working hard at killing these bugs off. Trusting, believing, hoping and declaring this is not, cannot be the end of my story.

I’m coping with tears, but it’s not because I’m sad this morning. These aren’t tears of defeat, these are the tears from battle. From fighting for your life.

Lyme has drastically transformed my little corner of the world. The effects of this illness, in combination with the host of other infections, my genetic makeup, mold illness and mercury toxicity, have led to a debilitating life. A life that looks so different than the one I dreamed of in childhood, high school or even college.

I’ll be 30 this year. Thirty. But as I struggle through my days, my ability aligns more with someone much older and a whole lot more frail.

Chronic Lyme disease can drastically change the way you’re able to function. And this is just a glimpse into the day-to-day life of those living with chronic illness.

After an hour or two of my “waking up” routine of resting and waiting to acclimate, I’ll finally sit up. If I’m stable enough, I’ll stand and move out to the living room.

Today I’m just going to sit for awhile on the edge of the bed, waiting. For the room to feel more stable. For my feet to be more secure. For my body to be more ready to start this day.

After finally making it to the couch I am already exhausted. This level of fatigue goes beyond whatever idea I used to have of it meaning “tired.” It’s so much more than that. This is a mixture of sick, tired, overworked and no shut-eye for days, all rolled into one. And no amount of sleep or rest remedies it.

The morning things need to be done, so I pick up one heavy foot after another and work my way into the kitchen to prepare breakfast. Which includes a delicious dose of what I’ll thinly veil as “supplement sprinkles.” (They’re all-natural pills, OK? I was trying to be cute).

After gathering my start of the day supplies and feeding the pup, I’m off to the couch for a dose of quiet or Netflix as I rest and munch. My brain is too foggy and full of pressure to write, or talk, or human right now so I’ll be here till my next nutritional recharge, thank you.

It’s taken me time to accept that resting is a key component to my treatment. My body demands it or else it will protest. And not peacefully, mind you.

It will tantrum, shoot pain levels up and cripple me with dizziness and muscle weakness until I’m forced to listen. Until I respond with quiet and rest. It will leave me with no option if I don’t give it what it needs now.

Today it requires a lot of rest. I didn’t listen as well yesterday. I did a load of laundry (no folding), loaded the dishwasher and made dinner. Though those may sound simple to you, that was my Everest. And I’m paying for it.

So I’ll focus on rest today.

I’ll stay close to the couch, texting and messaging friends, both sick and well. Passing the time in between cooking shows, documentaries and “Jane the Virgin.” I’ll write if my brain allows, read if I can focus long enough or color if my hands can handle it.

But mostly, I’m trying to listen to my body and be still. I’m trying to heal. Before dinner I’ll get in the sauna or do one of my other forms of detox therapies, but those may be the biggest tasks of my day.

I used to be embarrassed when asked what I do all day at home, but now I try to shake it off and just be real. I’m not lazy or unmotivated. I am sick. I am fighting for wellness. These are the facts of my reality.

I am doing the very best I can, which sometimes means saying no to an outing or phone call. It may mean missing out on an important event or gathering, but that could also make the difference in my pain level and ability to function for the days following.

This taste of a day in the Lyme light is a window into the struggle of illness, but it is only one piece of me. Of any illness fighter.

In the hours and moments I am able, I find ways to give back. I write, I encourage, I share authentically about this fight with disease. I love those around me. I smile and laugh and joke like anyone else.

I am a tiny person, but I am a warrior with a brave heart. I am a vessel to be filled with purpose, grace, kindness and compassion. And I aim to share them with others.

I may be debilitated most days from this illness, but it’s not the end of my story. I am more than these limitations. I am more than the fears that can hold me back. I am more than Lyme.

So what do I do all day?

I’m a survivor, a fighter, an illness warrior. So I do what we do best:

I survive.

Follow this journey on Living Grace.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 9, 2016
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