This weekend I had a really good day. One of those totally rare ones where I wake up feeling almost normal. I won’t say I’m pain free, but I feel more like my old self, the person I was before chronic illness took hold of my life. On these mornings, when my husband, J, asks me how I feel (as he does every morning, because he is sweet), I almost invariably turn to him with a huge smile and say “Today I feel like a human.” It doesn’t necessarily last all day, sometimes it’s just minutes or hours, but its always worth celebrating. He knows when I say this that I am game for being silly or trying something new. It puts us both in a sort of euphoric mood. When I was thinking about how we have come to associate this phrase with such joy, I realized that we (as a family) have added some pretty strange words and phrases to our vocabulary. I’m going to share some of our most and least favorites.
1. Today I Feel Like a Human – OK, so I basically already explained this one, but I still find it funny that “feeling human” is something we celebrate now. Its my way of saying, yeah sure I don’t feel great necessarily, but I feel like me, and I can work with that! It’s bittersweet because I know it’s temporary. Still, we always try to fit in something fun while it lasts.
2. I Prefer Medically Interesting – When I show up to yet another new patient appointment, the doctors and nurses are usually shocked by my records. It’s a lot for someone my age. I have actually seen nurses drop their jaw when I present them with my list of medications. This is when they usually apologize, or say something like “you’ve had it rough!” I don’t know how to respond to an apology for something that just is, that isn’t anyone’s fault, so now I respond with “I prefer to think of myself as medically interesting” and a smile. This always gets a laugh, and lightens the mood. It’s a trick I use to get my doctors and nurses to think of me as a human with a sense of humor instead of a series of records (that they probably don’t want to read).
3. Paingry – This one is simple, but unpleasant. It’s like hangry (also a favorite around my house) except that it’s the pain that’s making you a cranky bastard, and not hunger. It’s also harder to resolve. We’re sorry.
4. Painsomnia – This is the bane of my existence. For those with out chronic illness, it’s like that time you had the flu and were SO damn tired, but couldn’t sleep even though you took a bunch of medicine because EVERYTHING HURT. People with EDS (and many other invisible illnesses) live this every night. It’s a vicious cycle because lack of sleep can ramp up our pain levels, which in turn decreases our ability to sleep even more. Eventually this can lead to a major decline in functionality. Basically, it just sucks.
5. Flare – To me, flare is a dirty word, but it does speak to the pain we experience and how it can fluctuate. I don’t say this word out loud much, because it hurts to admit that I’m in so much pain when it’s happening. Still, in my mind this is what I call the especially bad days, weeks, months and/or years.
6. Out of Spoons – This is the phrase I tend to use with J instead of flare. He immediately gets it. He knows when I say this that I just don’t have any more to give. The phrase originated with The Spoon Theory. The following infographic by Dysautonomia International sums it pretty well:
7. Brain Fog/Transient Aphasia – Brain fog is something that people with chronic illness/pain struggle with. It’s pretty much exactly what it sounds like. Transient aphasia is the medical terminology for temporarily forgetting words. I literally forgot the words “brain fog” a minute ago, I’m not even kidding! (Ironic in a post about vocabulary). These beasts are why I always write two drafts of every post, and then still catch mistakes afterward. Super frustrating when you used to be really good with language. Also, yesterday I went to make a salad and left my phone in the refrigerator. I searched the whole house for it, for real. Also, my keys have been missing for approximately four days, I can’t remember how long for sure… Sometimes it feels like I’m not even smart anymore, but it makes for some pretty good laughs.
8. Napping Queen – This is one of my hubby’s nicknames for me. It’s like Dancing Queen, but less exciting (to onlookers). To me it’s totally exciting! I love naps!
9. It’s the Little Things – OK, so I admit that I used this one way before I got sick, but I didn’t REALLY GET IT until I wasn’t healthy. Lots of life events can make you learn to appreciate the small blessings in life. Other people figure this out after having kids, or losing a loved one. Being chronically ill is up there with the best of them. After all, I never would have appreciated “feeling like a human” before. I never would have been proud of myself for some of the things I am today, like you know, showering. I DID IT GUYS! I even put on makeup yesterday. Hooray for me!
Maybe you can relate? Did I miss some? Share a word or phrase that describes your experience with chronic pain or illness!