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To Those Who Ask What Exactly I Do All Day as a Woman With Chronic Illness

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You would be surprised how many times I have been asked this question. Is it rude? Yes! Do people ask anyway? Yes!

The answer is simple. I worked at a professional job for over 10 years, 40-plus hours per week. The job I have now of being at home full-time as a woman with chronic illness is the hardest job I have ever had in my life. I would love the people who have asked me this question to live in my body for one day and then tell me how they feel. I guarantee they will want to go back to work.

I may get to sit on the recliner or lay in bed for a large portion of the day — but it is because my body cannot physically move because of pain, or a limb has decided not to support me, or both. When I do get up, it is to hobble to the bathroom or the kitchen to grab a quick bite to eat. When I have to walk up the stairs, for some reason I often have tears in my eyes because of the pain it causes.

Yes, I can sit in front of the television all day. But most likely, I am in too much pain to even pay attention to an entire show. You see, when your body is in so much physical pain, your brain doesn’t work the way it once did. I don’t have a long attention span, I do not comprehend what I read as quickly as I once did. My brain is busy compensating for the physical pain I am in.

Sure, I can take a nap whenever I want. But I never feel rested. It doesn’t matter if I have had two hours, 12 hours or 20 hours of sleep, my body can just never seem to catch up.

“I would love to be able to go to the gym whenever I want!” they say. I do often go to physical therapy once a week. I try to stretch and strengthen and go for walks when I can. But it hurts. It hurts a lot. But I know it something I need to do to not let my body deteriorate any faster than it already is. One hour at physical therapy usually leaves me in bed for the rest of the day.

Meetings? Sure, I have those, too! A few times a week. At a doctor’s office. Or on a “conference call” with the insurance company trying to figure out the pile of medical bills we receive each week.

Am I lazy? No. I can do a load of laundry or cook a meal. I can usually get my son dressed, fed and to school in the morning (though not always); however, it usually means I will need to sit down and rest and recover from a simple tasks that most people take for granted.

So when you see me out and about and I have a smile on my face and seem to be enjoying myself — I probably am! I love my life. Is it different than I imagined? Yes! But I do my job. My job of resting my body, of nursing my aches and pains, of taking my medication and mentally preparing for the stamina I will need to do the things I truly enjoy.

Originally published: October 11, 2016
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