#241 Read the spoon theory

 

"I looked her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons..."

Have you heard about the "spoonies" and wondered who they are?

Communicating about chronic pain is an interesting creative challenge to say the least... This is why a description like the spoon theory by Christine Miserandino can change people's lives. Christine had been living with chronic illness since she was 15 years old and was trying to find a way to describe to her best friend what it was really like when she came up with the spoon theory - using spoons to symbolize the amount of energy a person has in one day.

butyoudontlooksick.com

I can't do it justice by writing a short version to fit the format of this blog, so I advice you to click on the link and read the full version. It will change the way you think about health, give you a metaphor for understanding some of the things that are happening to you if you have a chronic illness, and give you an inside understanding of what it's like to live with it if you don't.

#240 Hang out in the shade

Here in Sweden we are already starting to feel the beginning of autumn, but we still have some nice and warm weeks ahead if we're lucky. Living with chronic pain means I have to rest quite a lot and often that means spending all of my time indoors, looking at life passing by outside the windows. A few years ago some good friends bought me this wonderful mayan hammock, which has room for two (we've even been three + a dog at one time!), and which supports my spine perfectly.

When I lived in the forest I would I hang the hammock permanently between two beautiful birch trees overlooking the lake, and I would bring my book and a warm blanket out there and just hang out for hours every day. These days I keep the hammock in my car, so I can drive to a park and hang out there. This way I can be outside, getting fresh air and seeing something else than my bedroom ceiling - while still resting in an ergonomically safe environment that does not provoke more pain.

#239 Have a good comeback ready

One of the extra strains of living with chronic pain is that it's invisible. And somehow, when they hear that we are ill, a lot of people don't know what to say... so they say "But you look good!" and probably mean it as a compliment. Of course when you're in intense pain this feels like a slap in the face, as if they don't believe you when you say that you could hardly manage to hold your toothbrush that morning. In general, people seem to believe that illness that doesn't show is intrinsically questionable.

Feeling misunderstood is something that can lead to isolation. I almost stopped going to lectures after a couple old ladies harassed me for laying down on the tram on my way back from campus one day. I was 22 yrs old, I lived with constant pain and an unstable back fracture and was just trying to get an education.

After living with chronic disease for several years you don't feel the sting of "You look so good" that much anymore, but it still gets to you on a bad day. That's why it's good to have a creative comeback ready the next time you hear it!

For Invisible Illness Awareness Week last year they collected different responses to this classic unwelcome compliment and published 54 ways you say you respond to "But you look so good"

Some classics are:

"Thank you. I’m on my way to the Oscars."
"I’d be great if it wasn’t for the pain."
"I’m not complaining about my looks."


Sometimes its easier to be bitter than to be nice, but I believe that's just spreading the pain and it doesn't help anyone. Physical pain doesn't mean we lose our creativity though... what would your comeback be?

#238 Reach out to someone in pain

As a chronic pain champion you know best how to encourage someone else who is living with pain. This year for Invisible Illness Awareness week (sept 13-19), Lisa Copen has initiated a great project to spread hope and inspiration.

Do you have access to post-it notes and a pen? Great!! You can participate!

Watch this video to see how it works, and visit InvisibleIllnessweek to see some cool examples of how people are reaching out in creative ways. For example, how about leaving a nice note on the windshield of someone parking in a handicap spot?

#237 Three minute workouts

This is one of my favorite ways of reducing pain and staying fit. Apparently it's called "microworkouts"... I try to add several short 3 minute workouts throughout the day to get my blood circulating and keep my muscles happy. If you want some professional instruction and a private trainer right there with you by your desk, you can register for a free subscription to breakpal, where this woman pops up on your screen and brings you through an exercise program (kind of like Harry).

Or just improvise! Very many catchy tunes last around 3 minutes, so crank up the volume and dance, squat or do your favorite aerobic disco moves for as long as the song lasts. If you manage to get your blood pumping it is guaranteed to release endorphins and reduce muscle pain.