Chronic Migraine, Coping, Favorites, Friends & Family, Mental Health

Leaning on Your Support System

“People cry, not because they’re weak. It’s because they’ve been strong too long.” The National Headache Foundation posted that on Facebook last week, right when I was wondering how much more I could possibly endure. I’d had five weeks of nearly perpetual migraine and I was well beyond the end of my wits.

Sunday night I had an epic crying session. I wanted out of this body, this cage. I was tired of having to fight to do the smallest tasks, like eating or showering. I didn’t want be sick anymore. I howled and shook with frustration and fear for hours. My sweet husband held me and told me that even if I was too exhausted to fight, he was not. He told me not to underestimate my own strength. He told me that even if my life is harder than it has any right to be, it is a life worth living. With his kind words and solid grasp, Hart reignited my courage and determination.

My illness has changed Hart’s life nearly as much as it has altered mine. He married an equal, yet now finds himself supporting us financially, running our household and taking care of me. Instead of spending evenings at concerts, movies or with friends, he makes popcorn and we watch Netflix. I try to minimize the impact of my illness on him. I’m honest with him about how I feel, but when I’m in ruts like I was last week, I tend to stop talking about it. Since I isolate myself from everyone else when the migraines are bad, Hart’s my lifeline.

Sunday’s emotional implosion was not only because I’d been strong too long; it was because I did not allow anyone else to ease the burden. I don’t know how I will overcome the desire to isolate myself when I am sick, but I can’t keep trying to manage this life on my own. Though strong-willed is one of my defining characteristics, no one can carry the weight of chronic, debilitating illness alone.

Chronic Migraine, Coping, Favorites, Friends & Family

You’re Doing Everything Right

“You’re doing everything right,” a friend wrote to me two years ago when my migraines were at their very worst. That sentenced has sustained me through many difficult patches. It has been so helpful for me that I want to tell you that you, too, are doing everything right.

The next 10 days afford many opportunities to talk with (hopefully) well-intentioned friends, family or co-workers who will tell you about the person they know whose horrible migraines were cured with a sun lamp/energy cleansing/daily enema. Maybe you’ll be lucky enough to encounter someone who tells you that all you need to do is think positive thoughts and your health will improve. Before you explode, try to take some deep breaths and remind yourself that this person probably means well but doesn’t understand the magnitude of your illness.

Then, instead of jumping on the guilt and self-doubt train that awaits folks with chronic illness (“I’m letting people down” or “I need to seek new treatments more aggressively”), remember that you are doing everything right. That’s really the only truth that matters. Whether or not you live up to someone else’s judgments, real or perceived, is irrelevant. Maybe you cancel plans or show up at the party without the requested potluck dish. So what. As long as you get up every day and try to live your life around your illness, you are doing everything just right.

Chronic Migraine, Coping

“I’m Trying So Hard”

It is past noon. I’m finally out of bed and have showered and dressed. I want to write. I want to get the house ready for my mom’s visit next week. I want to bake Christmas cookies to decorate with friends this weekend. Yet here I am, slumped over at the dining table with my head pounding. I didn’t even mean to stop at the dining table. I was on my way from the kitchen to the living room, but my body is so tired and it hurts so much to move. I saw the chair and had to rest for a minute.

Feeling defeated, I mentally wailed, “I’M TRYING SO HARD!” Then a funny thing happened: I relaxed. Beginning with my shoulders, my muscles released. I felt calm and, of all things, satisfied. I am doing my best and I’m able to recognize it. I’m not berating myself for being lazy or wondering if I’m exaggerating my illness. I have a migraine. I am sick. And it is not my fault. IT IS NOT MY FAULT!

I don’t think I’ve ever used all caps on the blog before. It feels good. I’M WORKING MY BUTT OFF TO LIVE A GOOD LIFE DESPITE HAVING A CHRONIC, DEBILITATING ILLNESS AND I’M KICKING ASS!

(crawling to the couch now)

Chronic Migraine, Coping, Symptoms

Life With Migraine

Today is one of those days when I find it hard to believe that this is my life. After a 20-minute pep talk to get off the couch and make lunch, I made it the five steps into the kitchen doorway and collapsed in a heap on the floor. Though protein probably would have helped me feel better, the 15 steps to the refrigerator posed an insurmountable obstacle. As I slumped on the floor, I kept thinking, “Is this really my life?”

It was one of those times that I could observe myself from outside my body. I did not feel sorry for myself or obsess over the unfairness. I just watched, in awe that this relatively young body could be incapable of performing such simple functions. That my neurological system could flame out so dramatically.

Most people think my life is dominated by constant head pain. Yes, the throbbing, stabbing pain often reaches indescribable heights. I also have a mind that works at half-capacity, unable to connect concepts, complete thoughts or find words; a body with so little energy it feels as if all my muscles have been wrung out; nausea that causes my stomach to cramp. Sometimes I black out and wake up drenched in sweat. I so wish migraine were “just a headache.”

After all these years, I can still be surprised by the severity of this illness, astonished by my frequent reality. This really is my life.

Community, Coping, Friends & Family

Remembering Why I Blog

My mood lifted almost immediately after I posted on Monday. When I sat down to write, I had no idea what was going to come out. The ideas that flowed through my fingers surprised me. And released the reminders of why blogging has been a crucial “treatment” for my migraine and chronic daily headache.

While writing, I work through what’s bothering me and discover feelings I didn’t know I had. I speak candidly without worrying you will be distressed by what you read (as I fear my friends and family will be). In fact, there’s a good chance sharing my grief or guilt or pain will somehow help in your journey and provide comfort. I also don’t have to pretend to be someone I’m not. You come here knowing I have a chronic illness. You don’t remember who I was before I got sick, so you don’t miss who I used to be. Nor will I scare you off by talking about my struggles, as I feel I do many new people.

Whenever I talk about the blog, I focus on helping other people who are in a similar situation. I say the relief and support I get from it are lovely, but I’m really doing it for the readers. Now I see I am the true beneficiary. Even though I have been absent much of the last two years, this community has been crucial in my emotional healing. Thank you.