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Chronic Illness Perspective: Life’s Minor Inconveniences

A tiny fire started in my microwave last Friday and I didn’t catch it until the smoke rolled into the dining room. We were 20 minutes from leaving town for the weekend, so I set up the medical-grade air filter and figured the smell would be gone by Sunday night. Um, no. Although I never actually saw flames, the smoke damage ruined the microwave and permeated the walls and cabinets.

This was a minor household mishap — no one was injured and the damage is small and fixable. What I can’t get over is that I found the situation funny.

Really? Who reacts to a house that smells like smoke and days of cleaning with amusement? Yet neither daunted me. I could only see that my kitchen would be the cleanest it has ever been and that I might be required to paint the kitchen cabinets, which I’ve wanted to do for years. Isn’t that weird?

Trying to figure out the sources of my amusement led me to chronic illness. The many strategies I’ve learned to keep illness from subsuming me are useful for managing any sort of distress. A problem that doesn’t bring harm to anyone and doesn’t permanently damage my home just isn’t that big of a deal.

The fact that I actually feel well enough this week to do the work played a large role in my response. If I were relegated to the couch and had to smell the smoke without being able to do anything about it, I’m sure I’d be pretty frustrated. Still, this is the kind of thing that would have sent me into a tailspin even in the years before I got too sick to cope with the world. Being stuck on the couch this week would have been annoying, but I don’t believe I would have been fretful and distraught.

Chronic illness has given me so much valuable perspective. I’m not grateful for being sick and I will never say it is a gift, but after being so sick for so long, the minor inconveniences of life don’t matter all that much. I do appreciate the perspective.

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Perspective

Hart: How do you feel now?

Kerrie: You know, it’s not too bad. It’s like a hot steel rod is poking through my left temple and out my eyebrow.

Hart: Um, not many people could fathom how that description would constitute “not too bad.”

My entire head wasn’t throbbing and the brain fog and fatigue were slight, so the sensation of a metal poker wasn’t a big deal. As far as migraines go, it was pretty mild.

And that’s another thing Hart has called me out on recently — the idea that any migraine could ever be mild. Compared to the migraines that are strongest in my memory, the ones I’ve had lately are positively benign.

The perspective that allows me to classify a migraine as mild is one I’d prefer to never have gained, though now that I’m through the worst days (for now, at least), I’m glad to have it. It’s the biggest cliché of illness, but I really do appreciate every day that I feel OK in a way a person who has always been healthy never could.

Learning this lesson was excruciating, but reaping the rewards of it is nothing short of amazing. Going though each day aware of how fortunate I am to have it is a wonderful, joyous way to live.

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My Latest Posts for Migraine.com: “Shoulds,” Comparisons & Prodrome

Oops! I’ve forgotten to share my most recent Migraine.com posts with you. They’re just like what I write for The Daily Headache, just published somewhere else. My latest:

  • Wrestling With Self-Criticism and “Shoulds”: “I have that nagging voice that says, ‘You’re so much better than you were. Why aren’t you doing more?’ I try reminding myself that ‘better’ is far from great, but I still feel like I’m not doing enough.”
  • Migraine Perspective: No Two Migraineurs are Alike: “Human nature is to assume everyone else experiences something the same way we do. Like snowflakes, no two migraineurs are alike. Our migraine attacks differ, as do our responsiveness to meds, our support systems, and our ways of coping emotionally differ.”
  • Prodrome: Migraine Warning Signs: “Tearing is the most reliable warning sign for me. Sometimes it is accompanied by yawning, but not always. Frequent sighing is often a predictor, though I also sigh a lot when I’m physically tired and it can be hard to tell which is which.”

Take a look around while you’re there. Migraine.com is a tremendous resource for information and support. I feel fortunate to be part of the team of patient advocates and to work with the Migraine.com staff.

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“You Have What You Have — Good and Bad”

“If I ever have kids and they’re upset, I won’t tell them that people are starving in China or anything like that because it wouldn’t change the fact that they were upset. And even if somebody has it much worse, that doesn’t change the fact that you have what you have — good and bad.”

This quote captures what I try to say when someone tells me that their suffering isn’t a big deal compared to all the other horrors in the world. It’s been so hard for me to put this concept into words, but Charlie in The Perks of Being a Wallflower says it so eloquently.

Yes, the world is full of disasters and atrocities, and while you shouldn’t ignore these issues, “putting things into perspective” can do you more harm than good. It minimizes what you’re going through and keeps you from understanding and accepting your suffering as real. It also keeps you from mourning the real losses in your life.

Just thinking about what others are going through doesn’t help you or other people. You can’t help the people starving in China unless you help yourself first.

Keeping the tragedies of the world in mind is important too, but it shouldn’t interfere with how you treat yourself. Perspective does keep you from steeping yourself in sorrow forever, but some wallowing is necessary to cope with illness.

Treat yourself kindly. It is not you’re fault that you’re sick, nor are you a bad person for thinking about how your illness affects your life. Most important is that you take care of yourself so you can care for other people more effectively.

I’m writing this for myself as much as for you. Putting myself last is a lifelong behavior, just like for Charlie. I think I’m getting better at being nice to myself, but it’s not my instinct.

If you haven’t read The Perks of Being a Wallflower, I can’t recommend it highly enough. The main character, a 15-year-old in his first year of high school, is astute and charming. The themes are applicable to adult life and the novel inspires thoughts about how the reader’s teen years shaped the adults they’ve become.

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Feeling Awful & Gaining Perspective

Tuesday’s exuberance did land me in bed on Wednesday, but I felt pretty good on Thursday and was able to enjoy the day. The pain came back after I got home on Friday and stuck with me through the weekend.

For peace of mind, I’m going to treat this as two separate headache events. I don’t want to believe that I paid for a great 16 hours with 72 hours of agony. Honestly, though, I would have paid that much for having such a good day.

What I hate is that I had looked forward to spending time with Hart over the weekend. Not only was I in pain and not up to leaving the house, I was grumpy. Every little thing sent me into a tailspin. Like the realization that I will probably never travel to Iceland because sulfur triggers headaches for both Hart and me. (This isn’t as esoteric as it seems — Iceland has been my dream destination for a few years.)

When we decided that traveling was much more important to than spending
our money on stuff, it felt like the world was open to us. To have an outside force decide for me that I can’t fulfill a dream angered me.

It didn’t take long remember that I’m lucky to even consider taking a trip there. Many people don’t get to travel at all. I still have a choice, even if I can’t go where I hoped to go. So my choices are narrowed by one country. Big deal.

While it sucks to be in pain all the time, I appreciate how often it encourages me to think of what I do have. Regular doses of perspective are a great benefit of having a chronic illness.

I haven’t been up to responding to comments or e-mail. Know that I haven’t forgotten you! I think I’ll be able to get to all of it by tomorrow night.