“How are you?”

It’s a question I encounter dozens of times a day.  The grocery clerk, the neighbor, co-worker, my mother, my husband.  Each of these people requires or deserves a different answer to this question, particularly as I suffer from an invisible, chronic pain condition. Since I look healthy, when people ask how I am doing, the temptation is to keep up appearances and say, “Fine!”  In fairness to the grocery store kid, that’s a great answer.  In fairness to my mother or my husband, “fine” is not an appropriate answer.  It shuts out the people who care about me and keeps those I love at arm’s length. If I want to relegate the people I love to the realm of acquaintances, then I should answer them with a flip “fine.”

To answer the question of how I’m feeling, I run a mental algorithm:

  • Do I give an average of today’s overall pain score?

  • Do I relate an overall trend for the past week?

  • Do I run the highlight reel and focus on the positives for the day?

  • Do I pull out the Operation game man diagram in my head and tabulate the parts one at a time?

  • Do I start at the top and give the top to bottom list?

  • What descriptor would give them a good understanding of how I really feel?

The nature of chronic pain itself is funny because it is different in different parts of my body.  My headaches are fairly normal, though lately I’ve added classic migraines with visual disturbances.  Yay. Thankfully, that’s not an everyday occurrence. My hands and feet are stiff and achy all the time, and the balls of my feet throb and are crackly with occasional burning, shooting pain.  My back pain is similar to heartburn in my thoracic region.

The thing that sends me over the edge most of the time is my hips and lower back.  My right hip is relentless.  As I laid in bed, unable to sleep last night (another side effect of chronic pain), I decided to get creative in really describing my hip pain.  It feels like a rubber band that is stretched to the point that it is almost ready to snap.  I concentrate on relaxing, thinking that I’m just clenching; but there is no unclenching.  There is no massaging that relaxes that feeling.  It is a pain that feels like vinegar and coarse grain mustard tastes.  It feels like an acrid smell and would look like puce if it had a color.  It is annoying, especially at 3:50am when it wakes me up every night when my pain medicine wears off.  It’s an out of tune violin played quietly but persistently with the beat of my heart, never getting the resolution I need.

So, when my loved ones ask me how I’m feeling, it’s complicated.  It’s sometimes easiest to say, “It’s a pretty good day,” when I’ve had a better night’s sleep, and the medicine has kicked in.  Mid-morning is better than first thing in the morning.  Late afternoon is usually kind of rough.  I’m tired, the medicine has worn off but I’m trying to wait until closer to bed to take the next dose so that it will last through the night. Nighttime is hard.  Nothing to distract me when I wake in the night, can’t get comfortable, can’t take another pill, can’t get back to sleep…

I don’t want to be a crybaby, so I usually leave it at, “I don’t feel good today.”  Honest, but not whiny.  It’s a fine line to walk–honest, but looking at the world with a positive attitude, hoping for better days but confronting the reality of today, not shutting out the people who care about me but not wallowing in self-pity and wearing my pain as an identity.  I’m working through it and figuring it out each day.

In the meantime, the real Tepie is peaking through the curtains of chronic pain and fatigue.  She wants to come out and play, but she’s probably just going to go lie down for a bit.