After five straight days of mild-to-killer migraines, I’ve decided it’s time to pack it in and spend the day on the couch. I’ve been trying to press through, in part because I had a deadline. But now that that’s done, it finally dawned on me that if I’d had a fever for five days I would have been down on the couch long ago, right? So why not try a little rest and re-coup with the migraines.

Most of you know that I am a chronic pain survivor. I have chronic, often daily migraines with a side of insomnia and a new and improved symptom of general muscle-and-joint pain which I’m combating hard right now so it doesn’t turn into fibromyalgia. I don’t write about it that often because there are such excellent sites out there for headache troubles, and because I’m working hard on not letting the pain become my primary identity.

I often forget that for ‘normal’ people, it’s really hard to see and to understand what everyday life is like for people with chronic pain. Because it’s not like a cold–it doesn’t go away with a jug of OJ and a few hours of daytime TV. To some extent I try to mask my pain, especially from my girls who are already expressing concern that they are “going to have headaches like Mommy” when they grow up. (Something I am terrified of, because it is genetic and lurks on both sides of our family tree.) But even though I’m pretty open about being sick, and I feel like I bitch and moan quite a bit, the reality of managing chronic pain must be fairly hidden because nobody really gets it. Not the community that met every week in my home, not my best friends, not my parents.

Once, when I had to go off all my meds for a while to reset my system, Paul and I drove out to my parents’ house and asked them to sit down in the parlor with us. We told them very seriously, in that “Grandpa’s been diagnosed with cancer” sort of way, that my migraines were really serious. We explained that I was going to have to go off all my meds, and that this would throw me into a severe pain cycle for about six weeks. We were letting them know, because we were going to need some back up. Could they help with the kids?

I must have looked pretty bad already, because I recall them looking at me in a very concerned way. It was clearly an ‘ah ha’ moment. By this point I’d been sick for years—at least 3 years if not longer. But it was clear that it had never sunk in how deeply impacting this conditions was. And these were my parents, who we are very close to, who see us all the time. But still, they hadn’t really twigged in. Thankfully, they totally rallied. My mom called during the week to check on me. They took the kids for the weekend. They helped fold the laundry. It wasn’t that they hadn’t been willing to help. They just hadn’t realized how serious the situation was. To me, it seemed blatantly obvious. I thought the whole world was saying, “Wow. Did you see that woman? She is clearly sick!” But it wasn’t working that way—my illness was more hidden than I realized. And all I needed to do to get help from my folks, was to tell them.

So maybe we chronic pain survivors should explain a little more. Maybe that truth-telling would make it a little easier on everyone.

Recently Sacred Suzie sent me an excellent article by Christine Miserandino called The Spoon Theory. It might help you, it might help me, and it might help someone you love. In the article Miserandino describes how after many years of living together and seeing the effects of lupus, her best friend reveals that she doesn’t really understand what it’s like for her to have chronic pain. Miserandino gives her friend a fistful of spoons, explaining that this is all the energy she has for the day. The friend laughs and wants more spoons. Nope, this is what you’ve got. Then the friend tries to say that she’ll use one spoon to get ready in the morning. Miserandino points out that no, that will take three spoons: one for the energy it takes just to get up with joint pain; one for the mental energy of assessing where your body is at today (can you manage buttons? Does a low grade fever require a sweater for the chills? Etc.); one for the act of taking a shower when everything hurts. (In my case it hurts my scalp to wash and comb my hair, it hurts to lift my arms over my head, etc.) Then there’s breakfast… You get the point. By the time the friend is ready for the day half her spoons are already gone. Do you get it? Does that help?

Today, I don’t have very many spoons. Today I have to spend a lot of time on the couch. But tomorrow may be better. Tomorrow is another day.

The Spoon Theory is a good metaphors for describing life with chronic pain. Maybe they will help you or someone you known. And maybe if you understand a little better, that disconnect over not understanding will end, freeing up some energy and preserving another spoon for something better. Here’s hoping you have enough spoons to slurp up life today! May Shalom greet you at every turn. Namaste.

Related Posts:

God, Migraines, and Stillettos
Leftovers: Lonliness
Pain: Collage
Small Things you Can Do When You’ve Been Sick a Long Time
*8 Things: Songs I Need to Breathe
It’s Like a Miracle
On Pain, Mourning, and Telling the Truth
How Pain Shapes an Artist
On Pain and Indentity

This entry was posted on Friday, December 5th, 2008 at 3:29 am and is filed under Magpie Girl.
Tags: Migraines/Chronic Pain



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