Balancing Frustration and Hope When Living With Chronic Illness

There is approximately 0.0001 of a second from when I dare to crack an eye open to the moment I am aware of what type of day the chronic illness lottery has brought me. That split moment between wakefulness and dreams is bliss, a moment of peaceful innocence where hope blooms that maybe today is the day.

I am tired. This is not new. I don’t remember the last time I wasn’t — the degree to which my muscles ache, or my head hurts, or how many naps or energy drinks I need to operate at a basic level of functioning throughout the day may vary, but a day waking up feeling refreshed from sleep is a unicorn.

The first hour or two is easy, run on autopilot. The morning routine is set; I can do it with my eyes closed (and often have, the lights are too bright at this time). There is no thinking involved, no emotion. Get out of bed — tick. Have a quick shower — tick. Brush teeth, hair — tick. Get dressed, walk downstairs, out the door and hop on the bus — tick. I quietly work through the tasks in the stillness of the early morning workplace, restocking and ensuring the office is in order — I don’t have to talk to anyone yet, to fight through the brain fog to remember words or speak in coherent sentences. It’s a far cry from the sharp, quick-witted, elephant memory girl of years past.

Lists clutter our whiteboard, my notebooks and computer, the only reliable way I can ensure I can remember anything. The basics for each day: take meds, do steps, write my gratitude and things I did well lists, eat (and mostly well). Post It’s left on the kitchen bench: Take lunch, make coffee, headphones. Alarms set to wake up, leave the house, pick up the groceries on the way home. Calendar reminders for things that happen every week religiously: date night, work days, scheduled sleep-in mornings, keep free nights to sleep or rest.

I apologize, profusely. For not picking up on something, for needing to ask so many questions, for slowing the group down when we are hiking — sometimes with a laugh or a wide smile, sometimes it seems, for breathing. It’s just… I remember too well the person I was in the “before” when running marathons was just a casual thing I did and being tired happened at 2am. I remember not having to think so carefully about plans or scheduling in rest days so I wouldn’t crash with fatigue. I remember not having to worry that I may not be able to participate in life the way I wanted to and cramming so much in, every moment brimming with something. I remember and I grieve.

I am frustrated. Again. I have come home from work and need to nap before I attempt to participate in the most normal of daily activities — the making and eating of dinner. My partner — the Scientist — reminds me that in some countries a siesta is a way of life and so it is normal in our world too. I love him even more for his perspective and gentle kindness, always.

The war seems endless, with forever changing battle lines. I rally hard against myself with frustration and anger, I listen to what my body needs and it never seems to be enough. I try new medications with side effects including all-day nausea and rampant headaches. The supplements I take read like someone clutching at straws of hope: Fish Oil, Magnesium, Lysine, Zinc, Calcium, Prebiotic, Probiotic. I just want to be “normal,” whatever that is.

I wonder, often, if this is as good as I get. If we should stop searching for unicorns and just work with what this is. Some days that feels manageable, some days that feels just not worth it. I wear a pendant with hope written on it, nestled in my collarbone, touching it often to remind myself that every moment is ever changing. There is still time to be surprised. And yet, there isn’t. I must come to terms with the fact that this is my life now, these diseases and diagnoses are a part of me and shape how I must live, in order to have any sort of life.

In that split second between wakefulness and dreams, hope blooms, before a crushing realization. Today is not that day. Today may not ever be that day.

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