Category: Friends & Family

Chronic Migraine, Coping, Friends & Family, Triggers

Migraine, Careers, Weather, Happiness, Love

Kerrie Smyres

My husband left the best job he’s ever had so we could move to Phoenix for my health. He telecommuted at first, but it quickly became apparent that it wasn’t going to work. This is old news for me, but I haven’t shared it with you. I thought I was OK with how things were working out. Although Hart no longer has the job that he loved, he is starting his own company (yay, TheraSpecs!), which is something he’s always wanted to do. We’re both stressed about bills and the looming end of COBRA health coverage, but I thought I was taking it in stride.

Then Hart’s boss from his best job ever, in Boston, called to fill him in on the future direction of the company. It is exciting stuff; stuff Hart wanted to be a part of. Jobs and careers aren’t more important than people, of course. However, my husband having a job that doesn’t bore him and doesn’t overwork him, that paid well and had health insurance is worth a lot. I cried when he told me about the phone call. He gave up so much for me and the move to better weather only improved my migraines a bit.

I had felt significantly better on vacations to Phoenix, so we left Boston thinking we’d have a full life here. That we’d be able to go out frequently, have parties, take weekend trips. Instead, the migraines caught up to me after I’d been here two months. It was the weekend after we closed on our (adorable, fantastic) house and my mom dislocated her shoulder and broke a bone in it to boot. Real life came crashing down. My body realized it was no longer on vacation and the migraines were back. Not as bad as they were in Boston, but still regularly disabling.

I am much, much better now than I was my first year back in Phoenix, thanks to magnesium and cyproheptadine (which I’ve been on for seven weeks and still need to tell you about), but I’m still pretty wrung out by the migraines. I feel like my health will continue to improve. I just need to work out some kinks, like dosage and timing, and get myself on a regular schedule. That process is never as easy or as quick as I think it will be, but I still believe the life in Phoenix that Hart and I planned is close to becoming reality.

I’ve spent the last three days wondering if I could get myself well enough to move back to Boston so Hart could work for that company again. (I’m fully aware of how absurd that is — if I had that much control over my health, I’d have healed myself decades ago.) Never mind that the company may not need him anymore and that he’s in the (scary, uncertain, exciting) depths of doing what he’s always wanted. My mind grabbed onto the notion that there was only one solution and gnawed on it for days.

Finally it occurred to me that if I were healthy enough to move to a less stable climate, I’d be healthy enough to get a job for health insurance myself. I’d be healthy enough to be the woman Hart married, the one who’s always ready for an adventure. I know he wouldn’t trade that for any job.

Chronic Migraine, Community, Coping, Friends & Family, Reader Stories, Society

Invisible Illness Awareness Week

Kerrie Smyres

For National Invisible Chronic Illness Awareness Week this week, its sponsors at Rest Ministries and volunteers have created and compiled a tremendous array of resources for those of us with invisible illnesses.

  • Presentations from the virtual conference cover topics from relationships to work to identity. Several presentations remain this week, but all of them are archived for you to listen to whenever you need a boost.
  • The website has a large collection of articles on a wide range of issues that folks with invisible illnesses — and those who love us — confront every day, like the difficulties of explaining an illness to friends, how to respond when someone is insensitive, and how to help people with invisible illness.
  • The statistics and stories section has some shocking information about chronic illness. Like that nearly half of Americans have a chronic illness, 96% of which are invisible, and the divorce rate among the chronically ill is higher than 75%.

Poke around the site for a bit. I bet you’ll learn something new that will help living with an invisible illness a little easier.

Community, Coping, Favorites, Friends & Family, Society

Please Read “An Open Letter to People Without Migraine”

Kerrie Smyres

Migraine, chronic or not, has a profound impact on those who experience it, yet even well-meaning family, friends, coworkers and health care professionals often think of it as “just a headache.” An Open Letter to People Without Migraine was intended for my personal Facebook page — until I realized the message was too crucial to limit to a private sphere and decided it belonged on Migraine.com. It begins:

I have a migraine attack 28 days a month. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not a bad headache, but a neurological disorder that affects every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.

For the rest of the post, which may be the most important piece I’ve ever written, please see An Open Letter to People Without Migraine and share accordingly.

Community, Coping, Friends & Family

Inspiration in My Struggle With Migraine

Kerrie Smyres

Migraine Awareness Month Blogging Challenge #27: “In my Head and Heart” — Who inspires you to keep trying and not give up, despite your migraines?

Not giving up can be interpreted in multiple ways, from trying new treatments to continuing to engage with the world to not committing suicide. The stories I read online of people who find effective treatments after years of unsuccessful attempts keep me trying new treatments. You, dear reader, inspire me to continue writing and sharing my stories about living with chronic migraine. My wonderful husband Hart and my niece Michelle are the two people who keep me from giving up in the broader sense.

Hart encourages me in the day-to-day struggle of chronic migraine, making sure that I eat and laugh. He holds me when I wail that I want out and talks me through the frequent emotional and physical agony. He gives me strength every single day and I’m not sure I’d be here without him. He also makes excellent popcorn.

Although I have two nieces and two nephews who inspire me, my 15-year-old niece Michelle has a special place in my migraine world because she, too, has migraine and has had chronic daily headache since she was 11. Since she was very young, our similarities in appearance and personality have been obvious. I am honored to have those traits in common, but was devastated to learn we also share headache disorders. I cannot give up my fight to live well despite chronic migraine and chronic daily headache because I refuse to show Michelle that giving up is an option.

I don’t know what my niece’s path with migraine and headache will look like, but I will be here to guide her. I will not only tell her, but will also show her that the daily struggle is beautiful and worthwhile. I will also continue to advocate to advance the scientific knowledge and treatment of migraine and headache disorders. She is worth it. I am worth it, too.

Who inspires you?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.

Coping, Friends & Family, Society, Symptoms

Showing Others What a Migraine Attack is Really Like

Kerrie Smyres

Migraine Awareness Month Blogging Challenge #26: “From the Outside Looking In” — Write about what you think your family, friends and others think a day in life, a day with migraine disease is like.

This is the perfect time for me to reflect on what my life with migraine looks like to others. I’ve just returned from a long weekend in Minnesota, where Hart and I traveled for a wedding and to visit dear friends and family—many of his college friends, his sister, our closest friends from Seattle and my best friend from college. I spent much of the weekend in bed, though I made it out most evenings and managed to see everyone except my best friend from college. What was unique about this trip is that I was stuck in bed even though the pain never got above a level 6.

(Background: The longer people have known me, the less I have let them see how disabled I am. Counterintuitive, I know, but it has only been in the last three years that I’ve really let people see how sick I am. And by “people,” I mean everyone, including Hart. Including myself. There are many reasons for this, but two rise to the top of the list. First, I deluded myself into thinking I wasn’t as sick as I am by hiding from myself how debilitating the migraine attacks are. It was as if admitting how sick I was would somehow make it harder to improve my health. That if I couldn’t push through the attacks as I did for so many years, then something was really wrong with me. Also, I was ashamed of being sick and couldn’t shake the feeling that I was faking it. If being sick was a mindset, as I have so often been told, wasn’t my inability to get better a sign of weakness? Besides, how could a headache make me feel faint, weak and dizzy and make my knees buckle?)

I think most people I know understand that I am in terrible pain during most migraine attacks. I have been much more open about that aspect of the migraines in recent years and even began sharing my pain ratings. They also recognize the burden of nausea, because it is a relatable symptom, and photophobia, because I always wear TheraSpecs migraine glasses. [disclosure: I’m the co-owner of TheraSpecs]

I’m not so up-front about the less tangible autonomic symptoms—they are more difficult to describe and, even now, I’m still skeptical of their validity. Thursday night I was at the science museum with friends when my knees began to buckle and I thought, “Come on. Is this migraine really so bad that I can’t even stand up?” Yes. The answer is YES. Even I, a so-called patient advocate and the one experiencing the symptoms, could hardly believe it.

My college friend and I were scheduled to spend Friday together. It took me 30 minutes to gather enough strength to get out of bed. As soon as I did, my knees began buckling. I literally could not stand up. We rescheduled for Saturday. I awoke Saturday completely exhausted and nauseated, so I rescheduled for Sunday. Sunday I was so weak that I couldn’t even get out of bed. So I didn’t get to see my friend at all. The guilt is tremendous, especially because I still feel like I’m making up for being too sick to fly to go to her wedding three years ago. Also because I find it difficult to believe that the non-pain symptoms of migraine can be so bad that they keep me bedridden.

I’ve been struggling with this the last few months, actually. Even though I intellectually know better, I still tend to think of pain as the primary component of migraine. Since the pain has let up some since starting magnesium and, more recently, beginning to take Amerge at bedtime to reduce the severity of my middle-of-the-night migraine attacks, the autonomic symptoms have been more prominent. I assume they’ve always been present to the same degree, but pain overshadowed them. I can hardly grasp the impact of these symptoms myself—there’s no way I can expect my friends and family to understand them.

To answer the question, my friends and family probably think a day in the life with migraine is full of pull-your-hair-out pain, gut-wrenching nausea and recoiling from light. Some days are like that, though I’ve had far fewer of those in the last six months than the previous 10 years. Other days I physically feel like I have the flu and spend the day reading. Since I adore reading and migraine kept me from doing it for four years, those days aren’t too bad. Cancelling plans is particularly frustrating, though, because I think I should feel well enough to go out if I’m not in horrendous pain. (Should. Now that’s a word I’d like to strike from my vocabulary.)

These are just descriptions of my migraine days. There are similarities among migraineurs, but we’re all different. What are your migraine days like? Do your friends, family and coworkers see them as they really are or do you put on your game face?

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by Fighting Headache Disorders.