A big move jettisoned my self-care and other healthy habits

The winds picked up, blowing ominous clouds into view. The blocked sun and cool winds made the temperature drop more than 10 degrees. We were hours behind schedule. I’d wanted to be on the road at 2 p.m. because rain was expected at 4.

My legs and arms were hurting — actually, everything was hurting. I had a migraine from lack of sleep and food. We’d worked until 2 a.m. the night before and woke up at 4:30 to resume packing. This schedule was not how I should’ve treated my fragile, sick body, which nearly died over four years ago.

Let’s rewind to September 2020. I became sick when COVID-19 activated a rare genetic mutation. That sent my immune system into overdrive, and I nearly died. I suffered from hemolytic anemia, thrombocytopenia, and multiple failing organs. Since then, my disease has caused a myriad of comorbidities and led to a hysterectomy at age 37. Before it all, I’d never heard of atypical hemolytic uremic syndrome (aHUS), but now it’s a part of my everyday life.

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Since then, I do a monoclonal antibody infusion that causes me side effects similar to those of chemotherapy, including fatigue, hair loss, bone and muscle pain, and brain fog. I’m also trapped in stage 4 chronic kidney disease. And aHUS has caused other symptoms: exhaustion, postural orthostatic tachycardia syndrome, uncontrolled hypertension, and severe edema, to name a few.

Because of those health woes, my life has almost completely changed. I don’t have the energy or strength I used to, for instance. My body will shut down if I do too much. I’m also at risk of drops in my already low kidney function; if it goes below 15%, I’ll need dialysis again.

That brings me back to my opening story of moving day, in the wake of the unimaginable: My fiance and I have bought a house! And it’s in sunny, warm Florida, which should be a boost to my health.

I should’ve known better

We started the day with no sleep or breakfast, and we couldn’t leave for lunch because movers and cleaners had arrived. That brought on stress I should avoid. Still, we were packing even as movers hauled things outside. Things had to get done, but I was fading fast. We were hours behind schedule and losing steam. I finally made the executive decision for us to grab dinner, hydrate, and come back for the final clean. That was at 10 p.m.

Remember the rain I mentioned earlier? It was still raining at 10, which led to my car getting stuck in the mud. After seeing off a tow truck and having dinner, we worked until 5 a.m. Our cleaner even stayed behind to finish the rest of it.

We drove two hours before my body was done, following its tendency to shut down. My vision was doubling, and I started shivering uncontrollably. I couldn’t keep my SUV in my lane. I swerved a few times and realized I needed to stop, but the next rest area was 30 miles ahead! I white-knuckled the steering wheel as I drove there. I don’t know how I made it.

I called my fiance in the U-Haul to tell him I’d stopped. My sons were sound asleep, thankfully, so I was the only witness to my terrifying driving. As I set a phone alarm, I felt the taste of vomit in the back of my throat. I bolted for the bathroom. My stomach was upset from the lack of food, multiple medications, and the special prednisone I’d taken for my bad foot and stress. I wretched, coughed, and flushed with each slew of vomit. It’s worth noting that I’ve only vomited three other times in life, so I apparently only vomit if something is really wrong.

I weakly climbed in the car and planned to sleep for one hour. I woke up two and half hours later to my boys trying to sneak candy from the front seat, which made me laugh.

The drive to Florida from North Carolina, with naps and stops, took us longer than expected: about 12 hours from what should’ve been nine. But we made it. The next morning also brought nonstop stress to my body, because we had to empty the contents of our vehicles into the home, which is on stilts, which means lots of steps. We had movers, but still had much to do.

We still haven’t rested much, with all the unpacking, carrying, cleaning, and racing all over town to switch documents and see doctors. Today, as I write this column, I had another shutdown that resulted in a four-hour nap.

Thankfully and hopefully, this move will be my last. Even with so much to do, I’ve been reminded that if I don’t take care of myself, who will? I must be kind to myself, which is good advice for anyone with a chronic illness. We have only one body, so we need to take care of it.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.