Rating migraine disability differently

Inspired by a post from Kerrie Smyres on Migraine.com, I began rating migraines differently, using a “red/yellow/green light” system to track the quality of my life each day. After about a week, I noticed something interesting. I don’t have “green light” days very often. “Red light” days are pretty rare, too. Most days are “yellow”. But even then, there is a wide variation in my functioning. I need a better system.

Here are 2 examples of “yellow light” days.

Example #1 -This is a “no migraine or cluster headache” day. I’m not having attacks, but I am still severely limited.

I wake up around 10:00 a.m. feeling stiff and sore. It’s hard to get moving. Slowly I manage to prepare a simple breakfast, take my meds, and try to relax with a heating pad on my back while I watch some TV for an hour or so. I get a “good morning” text from my husband and a gentle reminder to make a few important phone calls. My head seems to be cooperating at the moment so I make the calls and try to relax. By noon I am able to move a little better, so I take my breakfast dishes to the sink and slowly load the dishwasher with last night’s dirty dishes. That simple chore sends my back into a burning flame. I grip the rails as I climb the stairs to the office to look for my muscle stim. It takes me awhile to get the pads correctly placed on the right muscle. I turn it on and surf the Internet while I wait for relief. An hour later I can finally move again. I check the time — it’s already past 2:00. Getting down the stairs is a bit easier, so I grab some leftovers for lunch. Before long my son is home from school. We spend some time chatting about his day before his therapist arrives. After an hour of therapy, it’s almost time for my husband to get home. He sends a text letting me know he’s almost home. A feeling of dread comes over me as I realize there is nothing planned for dinner. I know my husband will ask and once again I will have to tell him “no”. Why can’t I get a handle on something as simple as taking out food for a meal? Together we will cobble together something edible and crash. As tired and sore as I am, I cannot fall asleep. I stare at the TV or computer for hours knowing that if I go to bed too soon I will spend the night staring at the ceiling. I wait patiently for those first signs of fatigue. They finally come long after midnight as I slip quietly into bed, trying not to wake my sleeping husband.

Example #2 – This is a “migraine” day. I spend the day coping with prodrome symptoms, trying to carefully accomplish the tasks of the day before the “real thing” finally hits.

I wake at 7:30 and check in with my son before he leaves for school. I eat a decent breakfast, take my meds and load the dishwasher. There is only a faint twinge of pain in my back. Otherwise, my first impression is that this is likely to be a “green light” day. My heart fills with hope as I eagerly anticipate the enjoyment I will get from a productive day. I check email, make a few calls, and touch base with my husband via text. Inspiration strikes and I churn out 3 blog posts in a single morning. Now my adrenaline is pumping with excitement as I prepare to run a few errands. It feels so good to move about unhindered by pain! Just before I walk out the door, I feel that familiar warmth in my eye that usually signals a coming cluster attack. It’s not too serious, so I double check my purse to make sure I’m stocked with meds and comfort measures just in case. I take a moment to fill a water bottle and grab my sunglasses. Still feeling good, I take off. The radio irritates my sensitive nerves, so I turn it off. The sun is bright and my neck is getting stiff. Instead of progressing into a cluster attack, that ache burrows into the left side of my head and begins to throb ever so faintly. I think I can make it through my errands before the worst of it hits, so I carry on. The lights in the store are just a little too harsh so I leave my sunglasses on. Pharmacy, grocery store, back home, take kiddo to work…oops…waited to long. Now the monster is roaring. I pull into the driveway just after my husband gets home from work. He is flustered and needs some help. My head clears just a bit and I’m able to help him find whatever is the lost object of the day. Still, he wants to chat. His voice booms, rattling the foundations of my brain. I stop him and explain the migraine. Disappointed, he quiets down and gives me space to find my meds and an ice pack. The rest of the evening is spent in subdued quiet. Thank God there are still fresh leftovers or we’d all eat PB&J tonight.

It’s strange. I actually got more accomplished on the migraine day than on the back pain day. It seems like every day’s a “yellow light”. I’m always tapping the breaks, checking my mirrors, and preparing for a storm.

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