Living with chronic illness: the reality of any given Friday

Living with chronic illness: the reality of any given Friday

Living with chronic illness means every day is a balance, a delicate dance between self-care, mundane chores, and triggering the realities of the illness.

Idling on the couch this morning has revealed that I don't feel terrible. Just a bit tired. My husband drove this day's cacophonous carpool, allowing me to sleep late. Glorious. So, after an obligatory full-body systems check, I decide I'm up for a little exercise.

My husband started doing this 10-minute athlete workout, quick bursts of high-intensity effort punctuated with strength training. Our son and I enjoy ribbing him about it afterward, as he slogs through the house like a wet pair of jeans. It's a good workout, so figure the HIIT thing is worth a try. Unusually, I've been pretty healthy for a good couple of months now.

In keeping with my gripes about the never-ending laundry cycle (how you can you allow yourself a sense of accomplishment when it all just starts over again?), I decided to leave my pajama bottoms on and simply don a sports bra, t-shirt, and a pair of sneakers. My 10-year old but eternally youthful labradoodle jumps up and follows me around the house, having overserved a few key pieces of clothing that indicate a walk might be imminent. She's too smart for her own good, that one. I tell her, "Not for Chloe," and she settles onto her bed as I roll out a mat.

The video I've chosen is led by a fit, perky 20-something shouting out instructions. That's fine – at least I can hear her. I've long ago given up yearning to look like her, be her. As predicted, the workout's brutal. Star jumps (think: jumping jacks on speed) are particularly torturous. My thumps and grunts are interspersed with sharp squeaks from the toy chicken Chloe is energetically chewing on. It's not pretty, but I get through it. I can check getting some exercise off my list for today.

As I peel off my clothes and head for the shower, I realize I'm feeling pretty dizzy. Migraine clue number one. Still, I hope for the best. But when I go to the bathroom, I realize my pee stings. Shit. I think back and realize I forgot to take my antibiotic prophylactically, the only real solution to chronic bladder infections. A best-case scenario is no longer an option, but I give myself the length of the shower to decide what to do.

I've trained myself to recognize early warning signs of my body going to pieces on me. Observe, acknowledge, accept. Then adjust, treat, and wait. I'm somewhere between the acknowledge and accept stage in the shower when the world takes a sudden tilt, and I realize I'm about to throw up. The pile-on of symptoms my body performs when it's beyond done.

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This brings up an additional stage, one beyond the basic six. Crisis triage. Thankfully it isn't always necessary, though this time, it is. The world around me shrinks to what is just within my blurry vision. My body. The shower. Must not fall over. I sink to the floor. Hot water pellets zip my skin. Need a Zofran (anti-nausea, anti-dizziness), but have to make it out of the shower first. Must wait until I can stand. No stumbling. How long until the hot water runs out? Not long. Ten breaths to relax, talk myself through it, then begin.

I rinse the conditioner out of my hair and the soap from my limbs. It's okay, you can do it. Repeat epithet. I carefully exit the shower, grab my towel, and open the bathroom door. I suffocate on heat and steam. Dripping, careful not to slip, I open the tiny bathroom cupboard to reach for the Zofran. It's okay, you can do it. My shaky fingers slide over the pull tab. Stupid individually wrapped medication. It's stuck. You can do it. Then an ear-piercing shriek.

Damn it, I know not to open the bathroom door more than a sliver at first, or our over-sensitive smoke alarm in the hallway will detect airborne particles and start screaming at us. Goddamn it. I step out of the bathroom with the Zofran in my hand and peer into the bedroom. Chloe is cowering and crying in her bed. If the alarm makes my ears ring, I can't imagine what it does to hers.

Read more: 5 in-your-face principles for supporting loved ones through chronic illness

I jump up and close the bathroom door, pulling the towel from around my shoulders and waving it below the alarm, trying to clear the air. Mercifully, the shrieking stops. Relief is short-lived, however. Almost immediately, I'm enveloped in concentric waves of darkness, the sight of the hallway starting to flicker out around me. Great, now I'm going to pass out. I sink to the floor again and put my head between my knees. Breathing slowly, trying to focus on the grains of wood on the floor, the warm browns of the panels. Naked, still wet.

I reach the nadir, and the black starts to peel away. Ha. Caught it before I passed out. I still have the Zofran package in my hand, so I work on opening it and pulling out the pill. It's dissolvable (faster delivery) and mint-flavored, an acknowledgment that medicine tastes like crap, so maybe you'd prefer an overlay of toothpaste? My 8-year old son, who gets the same kind of dizzy, vestibular migraines, thinks they haven't succeeded in the taste category. But to me, it tastes of relief. It's okay. It's going to get better soon.

In this dark world of chronic illness, frequent migraines, and regular infections, most medication effectiveness ranges from not-at-all to sort-of helpful – at best. But Zofran, initially created to treat post-chemo nausea, is a true gift. It'll noticeably ratchet down my dizziness and nausea, often (though not always) circumventing the vicious cycle of vomiting and dehydration that on occasion lands me in the ER.

After the pill dissolves on my tongue, I slowly get up, hunched over at first, then all the way. I pull my robe from its hook on the bathroom door and shrug it on. I'm steadier. I'm okay; it's okay. It's going to get better.

It occurs to me that my recent workout/shower/smoke alarm sequence would have left me vaguely humiliated at one time. But you do some version of this enough times, and even that falls away. This day, my day has changed, as it so often does. I rearrange my plans in my head, editing out walking Chloe, paying bills, cooking dinner.

Ah well. Plans are tentative at best, subject to drastic revisions. And my husband is already planning on picking my son up from soccer, a fortuitous blessing. It's still not a bad day, per se. When I feel so wretched, I want to put life on hold until it's more bearable. Though my head pounds and my body still shakes, I have hope that with sufficient adjustments, I'll still be able to enjoy some of my weekend.

Ah, the focus required to sit down and write this has made my nausea return, my ears ring. Okay, well. I knew that was a risk, asking a bit more of my body when it has already rebelled so resolutely. More adjustments, probably back to bed. And then wait for the pain to recede, the tilt-o-wheel to settle.