I struggle daily with deconditioning from my multiple illnesses

My lungs are on fire. My heart is thumping so hard, I can feel my heartbeat in my ears. My breathing is heavy and labored. Pain shoots down my left leg from my sciatic nerve. I stop on the last landing to catch my breath and lean on the post next to me. Seven more steps to go.

I have to climb four flights of stairs every day just to walk into my home and get to my bedroom. I also live with five rare chronic illnesses and nearly two dozen comorbidities. I’ve lived with lupus and hypermobile Ehlers-Danlos syndrome most of my life, and then immune thrombocytopenia beginning in 2018. Even so, I managed to live an active life and worked full time until I nearly died from atypical hemolytic uremic syndrome, my new primary disease, after COVID-19 activated rare gene mutations and autoimmune diseases in my body six years ago.

It landed me in the intensive care unit for nearly two months with multiorgan failure, and I endured 18 blood transfusions, dialysis, plasmapheresis, immunizations, steroids, biopsies, hundreds of blood draws, and monoclonal antibody infusions that I continue to receive today.

The hospital stay resulted in me losing more than 30% of my muscle mass, a common result of being in the ICU that left me too weak to even step onto a curb.

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The lingering effects of deconditioning

This is how I learned about physical deconditioning, a decline in function after a prolonged hospital stay or injury. It can affect any part of the body, and I’m still dealing with muscle, cardiovascular, and pulmonary deconditioning. I can’t catch my breath, and my heart races when I climb stairs. Walking long distances is difficult, and even lifting myself onto a step stool is difficult.

I also can’t chaperone field trips that involve a lot of walking, because I fall behind. When we go on cruise trip excursions, I get left behind because I can’t keep up with the tour group, and I also miss out on activities with my family. Even a trip to the zoo is exhausting and once resulted in me having an emotional breakdown.

I often feel like an awful parent, like I’m only half a person trapped in a body that isn’t my own anymore. I feel like I’m in a body my immune system has claimed, merely to slowly destroy. I cry when I’m alone and know this has had an effect on my mental health. There are so many things I want and need to do but sometimes can’t because I don’t have the strength or stamina.

Deconditioning is one of the hardest and most disheartening comorbidities to deal with. It affects me every day of my life, whether it’s in not being able to finish a task, not being able to climb stairs, or missing out on activities with my children.

Physical therapy does seem to help. It stretches and strengthens my muscles, but every day is a battle. So I do what I can: a walk, breathing exercises, light yoga, or stretching. I may not be able to rebuild my muscle strength quickly, but I can work on my stamina a little bit at a time.

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