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Bonnie Eisenman

Software engineer, author, knitter, Esperantist. Member of NYC Resistor and author of Learning React Native.
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Almost exactly a year ago I published my chronic pain scale.

At the time, if I’m honest with myself, I was living pretty consistently in the 4-7 range. As a refresher…

7: Unmanageable. I am in pain all the time. It keeps me from doing most activities.

4: Moderate. I am constantly aware of my pain, but can continue most daily activities.

I had been in that range for many years - the lowest I’d been since puberty was maybe a 3. And I had a lot of days stuck at 7 or higher: trapped in bed, unable even to hold my phone and spend time on the Internet. (It is REALLY BORING to be in that much pain. THE CEILING IS NOT THAT INTERESTING OH MY GOD.)

In the time since then I’ve gotten a diagnosis and treatment. (Hey, it turns out that autoimmune diseases really suck!) I think that most days now, I’m sitting at a 3.

3: Uncomfortable. My pain bothers me, but I can ignore it most of the time.

Some days, I even make it to 2.

2: Mild. I have a low level of pain. I am aware of it only when paying attention to it.

My pain tolerance and awareness have changed a lot. Something that a functional pain scale obscures is the huge variation in perceived pain. Chronic pain is an intensely personal, relative, and emotional experience. Case in point: I had forgotten that I got migraines because they were below my baseline levels. That was a fun thing to rediscover. But hey, I can feel those now!

My ability levels have improved a lot, too. I am still mobility-limited and I would still call myself disabled: I am literally unable to do certain physical tasks. But I’m considerably more able-bodied than I was.

I am so, so, so lucky: to have good healthcare (finally, finally); a good sick leave policy at work; an incredible support network.

It’s been a weird and difficult and wonderful year.