Not the Life I Wanted
- I have a migraine attack every time I eat or drink anything but plain water. Every. Single. Time. That is not an exaggeration. Even plain sparkling water is a migraine trigger.
- I fall asleep having no idea if I will be able to function the next day. Before I get out of bed each morning, I must first assess whether I am physically able to do so. When I do get up, it’s with the knowledge that I could be laid up with a migraine attack any time during the day. Starting to go about my day then returning to bed 15 minutes later because of migraine attack is even more demoralizing than not being able to get up in the first place.
- My fatigue is so severe that I daydream of getting a walker to get around the house. I have yet to make the purchase because I fear I will feel even more disabled than I already do. I also daydream about having a toilet installed beside my bed.
- The very basic tasks of life, like taking out the trash, checking the mail, grocery shopping, or making dinner are often beyond my ability. Sometimes weeks pass between times I step outside the front door.
- I go months without seeing—or even talking to—friends or family.
- Quality time with my husband means watching TV.
Given that list, do I even need to tell you that I did not choose this life? Still I was taken aback when the words this is not the life I wanted sauntered through my mind. Of course I didn’t want this life. No one in their right mind would.
The list of losses I have endured due to migraine is so long that I can’t even remember them all without writing them down. I spent many years lamenting those losses and hating how migraine changed my life. Unsurprisingly, this did nothing to improve my migraine frequency or severity. It did not make me more functional or less disabled. It didn’t enable me to spend more time with loved ones. It made me angrier and sadder. It left me feeling utterly helpless and hopeless.
When the despair became too much to bear, when everything I knew to do to change my physical health had failed, I sat with two choices: suicide or finding a way to cope with migraine. Before you balk at the word “cope,” let me tell you a quick story. A reader once sent me an angry email that said, in part, “I don’t want to hear about coping. I want the pain to go away. I DO NOT want to cope with it.” That email voiced a truth that I’m sure is universal. No one wants to have to cope with migraine; we all want our migraine attacks to cease. Even those of us who talk about coping as if it were a lifeline want to be sans migraine.
I am in that latter category. I talk about coping as if it were a lifeline because that’s what it is for me. Coping is what keeps me hanging on when I feel like I’m out of options. I, and many of my fellow coping evangelists, have discovered that coping eventually becomes a bridge for us. By learning to cope when all hope feels lost, we somehow develop the strength to find new options, to try new treatments, to get relief big and small.
I still work every single day to find effective migraine treatment. I work even harder to cope with migraine’s affect on my life. I search for any little bit of good that my days bring. I maximize every moment in which I am functional. I laugh as often as I can. Instead of wallowing in how horrible every severe attack is, I distract myself with something pleasurable. When the gloom overwhelms me, I remind myself that the sorrow is transient.
The dark thoughts still come sometimes.
This is not the life I wanted.
When that thought visited me recently, that’s all it was: a thought. It did not ensnare me or twist me up in ugly ruminations of hatred, hopelessness, or despair. Instead, I acknowledged that this is not the life I wanted, but it’s the one I have. My life contains immeasurable pain; it also holds tremendous joy. Sometimes the former overshadows the latter, but the beauty is always there. Even when it’s hard to see.
This is not the life I wanted, but I’m going to do everything I possibly can to make it as good as it can be, even with chronic migraine. Doing anything else would feel like letting migraine win.