Let Me Sleep on It
As the spouse and caregiver of someone with atypical hemolytic uremic syndrome (aHUS), I am always conscious of the fact that living with a rare disease has affected both our overall lifestyle and the details of our days. But I also have noticed that it has had a profound effect on my unconscious life — in a surprisingly good way.
Overthinking and undersleeping
I used to wake up often in the wee hours of the night worrying about the details of the day. Whether it was the day before or the day ahead, it didn’t matter. I could worry in reverse or in advance.
Had I returned every call? Would the check come in tomorrow? What if it didn’t? Did I order enough material for the project? Would we make the deadline? What if it snowed on the day I had scheduled the installation?
And that was just the work-related worry. Next, I moved on to obsessing about family, friends, and complete strangers, and musing over the meaning of life.
I tried to tell myself that none of these concerns would matter to anyone in a hundred years. But they still mattered painfully to me at the moment. They stalked me for hundreds of moments during countless long nights, and robbed me of the next day’s energy.
Then, my husband was diagnosed with aHUS, a rare and life-threatening disease.
From counting sheep to counting pills
Suddenly, my days were filled with overwhelming worry, and ironically, the insomnia was gone. Facing a tenuous prognosis and incomprehensible medical bills by day, my subconscious knew I had to sleep through the night. I needed focus and stamina to learn about this condition and take care of this patient.
I had pills to count, refills to order, stats to record, doctor appointments to schedule, research to do, and insurance agents to argue with. The tasks were many, and the stakes were high. This was a matter of life and death.
My brain quit fretting in the night, replaying the previous day’s mistakes or rehearsing tomorrow’s “what if” scenarios. The day was done, my husband was not, and I knew full well what could happen if his numbers were off or he failed to show up for his next infusion.
From problematic to practical
Like many healthy people, I used to think my life was complicated and worrisome. I suffered from a nocturnal anxiety born of vague unease with no clear answers. Now, I am dealing with a specific disease and practical care and treatments. The former kept me up at night, while the latter gives me a reason to be ready for the next day.
My troubled soul has subconsciously learned that rather than ruminate, I can react. Instead of agonizing, I can act. All I need is a good night’s sleep to give it a good try. Paradoxically, my husband’s rare disease seems to have cured my commonplace insomnia by putting my worries in perspective.
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.