When I Run Out of 'Spoons,' This Is What My Day Is Like
I think every patient with a chronic illness knows Christine Miserandino’s “spoon theory.” People with chronic illness use spoons to describe how much energy we have. She was able to put into words what so many of us experience. But what happens when we run out of “spoons”? The experience varies for each of us.
My alarm typically goes off at 8 a.m., and I can usually drag myself up. Today I cannot. I can barely get the message from my brain to my arm to my hand. I turn off the alarm and go back to sleep. Ten hours was not enough. Three hours later, I wake again, groggy, and I test my brain first. It is somewhat functioning. Through the fog, it knows I have a doctor’s appointment at 1, and I need to be out of bed soon if I am to make it. It also knows I need steroids, soon, although it cannot figure out why there are not any next to my bed. Why? I need to fix that, but I cannot comprehend such complicated logic right now.
My brain tells my legs to move. Nope. Not happening. It spends the next half-hour trying, and failing, to convince my legs they are needed in this process. My bladder is screaming now that, after over 13 hours in bed, it is full. It takes another 20 or 30 minutes before enough adrenaline kicks in to power my body out of bed. I finally manage to get up, dizzy, and grasp my nightstand until the wave passes. I stumble to the bathroom, then go directly to the kitchen and take my morning handful of medications, including steroids. I manage to pour myself a cup of coffee, stagger to the couch and lie down for half an hour to give the steroids a chance to kick in. I realize I am not going to make it to the doctor today, because, well, I am too sick to go. Once the steroids kick in enough for me to form coherent sentences, I cancel my afternoon.
I am freezing. I have a migraine now. I have turned up the heat and the fireplace, and I am bundled under three blankets. The television is on reruns of one of my favorite old shows for comfort. I fall asleep, but by 2 p.m., I manage to get up and brush my teeth, eat a few crackers and open a Coke. My brain feels like the fog is lifting. However, I speak with my husband on the phone, and he says I am still slurring my words. I lie back down and doze off. He wakes me when he gets home, makes sure I am still alive and covers the basic questions: who is the president, what is your middle name, what is our daughters’ teacher’s name? I pass, so no emergency. (This is painfully routine after so many years.)
By 7 p.m., I am slowly coming back to life. However, I am sore from head to toe. I am groggy. I feel like I have been in a losing battle with an 18-wheeler, but I am able to think fairly clearly again, eat dinner and move around the house a bit when I want to. I no longer have to debate the merits of making it to the bathroom versus cleaning up the mess if I don’t. Small victories. By 9, I have enough energy to check out the Kindle deals of the day. Yay!
I have had the adrenal insufficiency portion of my diagnosis for over five years. In theory, I should be able to prevent most situations like this; however, days like today show how difficult this is to manage. No medication, no human, can replace the natural body’s function. My cortisol was too low, and I was experiencing the first tier of symptoms.
In many cases, Addisonian crisis is caused by an extreme situation, such as injury or illness. However, prolonged, “lower-level” stressors can also cause difficulties, sneaking up on you like the stalkers they are. According to Mayo Clinic, symptoms of a crisis can include but may not be limited to:
- severe vomiting and diarrhea
- pain in the lower back or legs
- low blood pressure
- pain in abdomen
- loss of consciousness
I have experienced this before, and I know when it is time for me to take an injection (followed by a trip to the ER) versus when to just up my oral dose and ride it out. I knew I had been “overdoing” it for a week prior to this, and I have an appointment with my endocrinologist in a few days to discuss how I can avoid this in the future. It will probably be several more days before I feel decent, and a week before I recover from it. I think the worst part is that brain fog is generally one of the first symptoms, and that makes it more difficult to manage.
How does running out of spoons affect you?
Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.
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