My friend linked me to a wonderful blog post about “invisible illnesses” and how to explain them to normal healthy people.
“Christine Miserandino, a lupus sufferer, was at a café a few years ago when her best friend asked her what it really felt like to be her. She was moved by the fact that her friend truly wanted to understand in a visceral way what her life was like. So she grabbed 12 spoons. She explained that most people are given an unlimited number of spoons each day to do whatever they want, but when you have an invisible illness, your spoons are numbered and you have to use them very carefully so they take you through an entire day.
She asked her friend to list off every activity she did from waking up. With each activity, Christine explained the huge effort that it took just to get through it and with each activity mentioned she took away a spoon. She explained that at that rate she’d have no spoons left in no time and not be able to get through the morning! So she explained that she had to very carefully parse out the spoons–and not do so many things that she had taken for granted when she was healthy. Her friend quickly understood — and apparently so did the rest of the Invisible Illness world. The word Spoonie has now become synonymous in the social media world with Invisible Illness.”
I love this explanation of how it feels to have lupus because it’s something that is so much easier to understand than my usual explanations. I often explain to people that I’m more tired than I used to be, but that doesn’t accurately describe how it is at all.
The truth is that, as explained in the blog post, I have to pick and choose what I do. I can go get my car fixed during the day, but that means I probably can’t cook dinner later at night because I’ll be too tired. On a good day I can clean my bathroom and do laundry, or I can play poker. I can’t do it all. And on bad days, I can’t do any of it.
It’s hard for “normal” people to understand because to many of them, it just seems lazy. They can go to work during the day and then get dinner with friends at night. If I have a dinner date with someone, I better be home during the day and I better be taking it easy, otherwise I’ll feel like crap at night.
It takes an entire day for me to play a few hours of poker. I usually wake up feeling really bad until I’ve eaten and taken my medication. Once I eat, drink, and take some meds, I feel a bit better but rarely well enough to play poker. While I’m waiting to eat lunch, I try to review some hand histories to get my brain working.
After lunch (which is often in the afternoon for me because I usually wake up pretty late) is when I start to feel more like myself on the good days. I’ll review, warm up, and then start playing. I can play 2 to 4 hours depending on action and how I feel on any particular day. It makes me really happy to get in 4 hours, almost like I’m a normal person.
My doctor says that when my medication is stable and I’ve been off prednisone for a few months, I’ll start to feel more normal again. Right now I have a really hard time stringing together days where I feel well enough to play poker. But in the future, despite having lupus, I should be able to. I just have to be patient.
I’m really not a patient person at all. But I guess I’ll have to learn. Or go crazy trying.