A Spoonie is a nickname for a person living with chronic illness, that identifies with Christine Miserandino’s Spoon Theory. Her full story can be found here. The reader’s digest version is a person living with a chronic illness; hypothetically measuring personal daily activities and comparing with the proper amount of spoons needed for an event or occasion… sometimes you have an abundance, other times you come up short.
As a kid, I grew up helping my mother out a lot. She didn’t have an illness, but a chronic pain. She ripped 3 discs in her back and the nerves in her spine would get pinched between the vertebrae. Thus, causing her immense pain and it would cut her ability to walk. The medicines they gave her would essentially put her in a medically induced coma and she would sleep for 5-7 days. I would help her to the bathroom, to a chair if she felt up to it, and sometimes even helped with food. I reached the age where I was allowed to cook, so I did and then I would feed my little sister, mother, and father if he was home. (Side note: my Dad was in the Navy so he was out to sea a lot until he got closer to retirement). The point of me sharing this is that I learned early on about spoons and not having enough to get through a day. This made the news of becoming a Spoonie myself a little easier to handle.
Fast forward to today.
I’m a Spoonie with Gastroparesis. The majority of my spoons go towards getting ready, eating, driving, and physically talking. If I didn’t have to talk on the phones, I wouldn’t have to struggle so much. I feel like the more I talk, the more nauseous I get, the more I start to regurgitate anything that is in my stomach and then more spoons go out the window for trying not to vomit and have to leave work early.
I’m a Spoonie that married another Spoonie. My wife suffers from Chronic Migraines. She has had multiple concussions from sports injuries and car accidents and each time she gets a new concussion, the migraines and symptoms get worse and last even longer. She has a hard time looking at computer screens and being in a loud environment that is bright. I’ve noticed the majority of her spoons go towards getting out of bed (adjusting to lights), Showering (loud noises), and the driving/riding to work. It’s a 45 minute drive to work and it’s all highway through Pennsylvania hills. The motion sickness and loud road noise gets to her and makes starting her work day that much more difficult.
Here’s the tricky part about 2 Spoonies in 1 house. What ever spoons we do hold onto throughout the day get used for each other. For example: If I am in a flare and cannot hold food down, I spend my time in the bathroom vomiting. My wife being the kind, caring person she is will use a spoon to come sit with me in the bathroom which is bright and loud. That makes me feel comforted that she’s there but also makes me feel bad that I know 1 spoon has been used on me instead of herself. Or even the other way around. If she has an episode, she needs help getting to bed and needs to take her medicine. I need to use a spoon cooking something so she can eat and her medicine not affect her stomach. I love cooking but it does use a spoon or 2 depending on how I’m feeling at the time. I know she appreciates me but I can see it in her eyes that she feels bad that I just “wasted” a spoon on her.
A line that is heard in our house is, “Baby, will you fix me?” It’s usually said when one of us is at our lowest of lows. We both clearly know if something could fix us, we would do it. And that line alone is enough to break your heart because all you want to do is be able to magically take away your loved one’s pain. We have both seen each other at our worst points and we fear leaving each other when one is getting to that point. What happens if I go to work and she needs to be taken to the emergency room since her medicine isn’t helping? or if she goes to work and I stay home during a flare, what happens if I get so dehydrated I pass out? Who would find us and how long would it take?
She is my sunshine and I am hers but when our skies are grey, they hold us down.