I May Be Living in a Constant State of Illness, but I Still Rise


I wake in the room I’ve been in for most of my teen years and now the majority of my 20s. There have been times where I’ve lived elsewhere, slept in other rooms and beds, but when I reach an age that this no longer is, I will look back and remember this place as my home.

I’ve slept through the night waking to adjust my hip, wince through muscle spasms and finally I woke at dawn when my heart rate peaked and fluttered in my chest making it too uncomfortable to sleep.

The cat brushes up against the table next to my bed; I’m afraid she’ll knock something off it. I glance at what is on the table, which in my mind’s eye is a larger glance at the rest of the room. I can see how my life stopped this time. This wasn’t just a flare like the many I’ve had in the last two years. My life stopped mid-sentence this time. Glancing at the things left forgotten on the table and desk, the strange ephemera of my last life collecting dust in the corners of the room. Forgotten projects, colored pencils here, a half knit sock over there and here, watercolors curling at the edges. The old inhabitant of this bedroom up and left in the middle of everything. Evacuating and leaving all behind. Now I am left in this body, curled under heavy blankets. Deciding which way to turn over will hurt less than the other.

I didn’t lose interest. My monster is not the fact that I no longer enjoy the things in my room, my monster is that I can no longer do them at all. My hands hurt too much for the magic of turning a sock heel. My brain too foggy for the intricate details of coloring in the nature scene. I love all my crafts and projects. I want nothing more than to paint another peony. Knit more lace. But my body can’t keep up with what my mind wants. Some days my mind feels like it could run laps over and over again around a body that shivers and aches.

Illness is equal opportunity. It didn’t come to me because I’m old and I’ve had a good life. It didn’t choose me based on how well I do or do not take care of myself. It can choose anyone. For any reason. I was a typical, normal human, doing typical, normal human things. And then, all at once, my body ached; I must be getting that flu that’s been going around. I was more tired than usual, way more tired than usual. I insist it’s just a bug and I’ll be more myself in a week. Then it’s a month and I wonder, did my back always hurt like this? Then two months and I’ve had to adapt fitting naps into my schedule on really off days and I’m waking up just as tired feeling as though sleep does nothing. Then all at once, I feel everything, achy, tired, every muscle in my body is made of pain. My stomach and head roll as I try and get up, nauseous, dizzy.

I didn’t prepare for this. I had no idea my illness was going to double back this time. I didn’t know the muscles in my thigh and buttock would, could feel like solid in my body and then in another minute spasm and jerk in pain. Numb feet that tingle like hugs. Hands in skin gloves too small, numb, shaky. I wish I had prepared better. Cleaned and organized my room. Illness gives no warning, no advance notice. And here I lie, knowing this is the normal I have to live through, most of the time alone.

Living in a state of constant illness, I wake up every morning and assess for the day what the illness has given me. I count in numbers the life of a battery pack, or I count in kitchen cutlery, holding this close to my chest lest something – showering, making the bed, getting dressed – steals this away from me. But in the end I do wake, like Maya Angelou, “I still rise.” With the pain, the fatigue, the endless what ifs, I choose to still rise.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via primipil.


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

girl holding pumpkin with text 15 hacks that can make halloween easier with a chronic illness

15 Hacks That Can Make Halloween Easier With a Chronic Illness

Halloween season is here, which means much of the Halloween-celebrating-world is busy planning costumes, buying candy, and carving pumpkins. But living with a chronic health condition might mean these activities are more difficult for you. Maybe you have chronic fatigue that makes trick-or-treating a challenge or pain that makes costumes hard to wear. And few people realize [...]
lemons

When Life Gives You Lemons While You're Dealing With Chronic Illness

You know the saying “when life gives you lemons…” you’re supposed to make lemonade? Well, what happens when life throws those lemons and, say, causes a concussion? It’s not as easy to make that lemonade now, is it? I’ve been sick now for going on a little over a month with infections along with my [...]
modsquad and stitch fix logos

These Companies Have Side Gigs That May Be Great for People With Chronic Illnesses or Disabilities

Between doctor appointments, unpredictable symptoms and physical accommodations, going to a full-time job every day isn’t always feasible if you have a chronic illness or disability. But that doesn’t mean you don’t have useful skills to offer the job market or passions you’d like to explore (and the extra cash wouldn’t hurt either). Enter the “side gig,” a.k.a. part-time, [...]

To the Officer Who Made a Snarky Comment When I Parked in a Disability Spot

One thing every single young chronically ill person will tell you about is the incredibly frustrating battle that comes with having an invisible illness. We are constantly trying to regain normalcy in our lives, but also have to roll with the punches through the symptoms our illness brings along for the ride. For example, I [...]