I’m learning to say, ‘There’s always tomorrow’ when I’m feeling guilty

I deal with guilt often. Guilt that I can’t work my full-time job anymore, guilt that I need rest after every activity, guilt that I can no longer be the cool mom who’s up for anything.

My life completely changed in September 2020 when I became gravely ill. I was hospitalized for nearly two months in the intensive care unit (ICU) with multiorgan failure, very little blood in my body, and sky-high blood pressure.

I was ultimately diagnosed with an ultra-rare disease called atypical hemolytic uremic syndrome (aHUS) that was causing my immune system to destroy my red blood cells, and I was developing blood clots in many of my organs. I nearly died.

The recovery has not been easy. Much of the organ damage I sustained is permanent and affects my kidneys, liver, and heart. My uterus was affected, too, but I had it removed in 2021. This condition has left me with several comorbidities that affect me every day. The extended time in the ICU caused me to lose muscle mass, which is apparently common with lengthy hospital stays, and my illness has caused my body to become deconditioned, permanently weaker than I was before I got sick. I’m unable to do many of the things I used to do with ease.

This affects everything, from working and cleaning my home to caring for my children, cooking, running errands, taking vacations, attending family gatherings, shopping, working on home projects, and so much more. It takes me much longer to complete any task. And I don’t have the stamina or physical strength to complete multiple things in a day as I used to. And when I do complete a large task, it sometimes uses up all of my energy, forcing me to rest. One busy, productive day leads to a day or two in bed.

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Always tomorrow

My mind and cognitive abilities weren’t affected, but my body can’t match what my mind is capable of planning. The guilt I feel about this can be all-consuming and affects my mental health.

I am learning to adjust my sense of urgency about completing tasks, though. I am learning to be more graceful and patient with myself. If I can’t complete something today, won’t that task still be there tomorrow? Is it the end of the world if I wait a day or two to complete some things? “There’s always tomorrow,” I tell myself.

Those three simple words have become my daily mantra. They have given me the ability to show myself some grace, to take my time, to rest when I need to, and not to feel guilty about it.

Of course, there are some things that need to be done quickly, and that’s OK. But not beating myself up when I can’t finish a to-do list has been a plus for my mental health. Being able to say that “there’s always tomorrow” helps me be a little more forgiving of myself.

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.