Blogger Zebra’s Child, who has common variable immune deficiency, recently posted about the struggle she finds staring herself in the face first thing in the morning. While looking in the mirror she usually questions, “You want me to actually get up and function in the world? You have got to be kidding me.”
She explained that after spending more than seven hours hooked up to an IV, her head ached, her muscles were sore, and her soft tissue was being very hard on her because of all the medications that had coursed through her veins the day before.
Zebra’s Child is probably not alone in not wanting to face getting out of bed, but she does have another condition, fibromyalgia, that makes treating her CVID even more painful. She understands that if she doesn’t drag herself out of bed on the day after treatment, she’s going to feel worse, and she says, “The worst thing you can do is to be immobile,” so she makes herself get up and get active to the best of her ability.
“You want me to actually get up and function in the world? You have got to be kidding me.”
Zebra’s Child credits her dog with helping to motivate her because he can’t walk himself, so she has to. Typically, though, she finds walking a short distance is all she can handle on post-treatment days. That’s when she goes easy on herself and allows herself to crash on the couch for a half an hour.
Some mornings, she reaches for her favorite children’s book, Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. The story is about three brothers who are having the worst day ever, and they decide to move to Australia as their grand solution for their woes. But by nightfall, when their mom is tucking them in to bed, she informs them that “Some days are just like that.” And, as Zebra’s Child reports, those days can happen …even in Australia.
In case you are wondering what the name Zebra’s Child has to do with CVID, read how the link between CVID and striped animal began.
Take a step back in time and check out the full animated version of the classic children’s book.