Sometimes we need to remind ourselves of the importance of rest
Living with a rare disease takes a hard toll on the body and mind
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I rubbed my eyes and opened them hazily while wiping away what felt like years of sleep and crust. For a second, I had no idea where I was. I wasn’t at home, nor was I at a friend’s house.
Oh, yeah. The infusion lab.
“Sweetie, sorry to bother you, but I think they’re closing up shop,” someone said to me. Panic swept over me as I looked around the pod and saw only one other person still receiving treatment. I’d completely fallen asleep. And not only had I’d fallen asleep, I was also drooling. How embarrassing.
I was in an infusion pod because I suffer from an ultrarare disease called atypical hemolytic uremic syndrome (aHUS). Every two weeks, I receive a monoclonal antibody infusion of Soliris (eculizumab), which suppresses my immune system so it doesn’t attack and destroy my red blood cells.
The volunteer who woke me, a petite, elderly woman with a New York accent, was as sweet as she could be. But I could tell she felt awful about waking me up. Becoming chronically ill with several illness is taxing both emotionally and physically. My body is constantly fighting for sleep, rest, and relaxation, while my immune system and body wage war against each other.
Sleep and rest are a funny thing. I was raised by younger baby boomers, and there was always a constant pressure to be doing something. Sitting and resting weren’t allowed. Being stationary was seen as being lazy. So, even as an adult, and even after my parents have passed away, it’s hard for me to shake that guilt and truly let myself rest.
The treatment for my disease is taxing on my body. It’s not the same for everyone, but I experience more fatigue, bone and muscle pain, leg cramps, gastrointestinal issues, and severe edema the first few days after treatment. I definitely have reasons to be tired.
I’d fallen asleep around 2:30 p.m., and my nurse had managed to unhook my IV and bandage my arm without me even noticing. It was now 4:30 p.m., so I was knocked out for two hours. I felt so silly, but my rare disease journey has taught me something very important: Sometimes you just need to take the nap.
I always feel a ridiculous need to fight extra sleep. But it doesn’t have to be like that. From now on, I’m going to allow myself time and grace to rest, because our bodies, minds, and souls deserve 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.
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