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Losing Days, Months, Years to Migraine

I’ve had six months of migraine chaos. For the last two, I’ve been housebound, unable to work, struggling to even feed myself, not doing much of anything else. This downturn follows a year of feeling like my migraine attacks were manageable for the first time in my adult life. A worsening of symptoms is always distressing. Having that worsening come right before I turn 39 has transformed the stress to a borderline crisis.

You, like me, have probably lost a lot to migraine: friends, jobs, further education, hobbies… maybe even a marriage, time with dying loved ones, or seeing your kids grow up. Our lists will be different, but the weight of loss is always heavy. Of all the heartbreak I have endured, only one loss continually brings me to my knees. It’s one for which there is no chance to repair, regain, or replace.

That loss is time. I can make the most of however many years I have left, but my 20s and 30s are irretrievable. With years of excellent therapy, I had (mostly) come to terms with what I’ve lost in the past. As I approach 40 and am stuck at home, the specter of future losses loom: How many more years will migraine render me barely functional? How long will it take to find another effective treatment—six months, eight years, two decades? What other once-in-a-lifetime experiences and milestones will I miss?

I cannot know the answers to those questions until I’ve lived them. Instead of being terrifying, that truth actually comforts me. Aside from the occasional freakout, I try not to predict the unknowable future. Instead, I focus on what I can do each day. Today I will lie on the couch and plan what to talk to my headache specialist about next month. I’ll think about which treatment variable to tweak next. If I’m up for it, I’ll read up on the latest research. These steps feel infinitesimally small, but I tell myself that each one brings me a little closer to relief.

Moments still slip away faster than I can bear. Some days I can’t do even one of the tasks listed above. The passage of time is more acutely painful on those days. I will eventually work through the tremendous grief, but probably not for a long time. For now, I pack it away where I can’t see it. It’s the only way to keep myself from collapsing to the floor in sobs.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Luna
    4 years ago

    Being positive is a choice but I still have to work at it. A few weeks ago during recovery from a compression fx I realized that I was grieving for everything I had lost and everything I will lose. This included people, pets, and abilities. Once I realized the emotion I was able to work through it. I live alone in a rural area. This can be very lonely and downright depressing but I do not let myself dwell in that space. Distraction and lots of prayer works for me.
    Like Kerrie says “I try not to predict the unknowable future. Instead, I focus on what I can do each day.” Thank you, Kerrie.

  • Crystal
    4 years ago

    I am really struggling mentally with this. I have been suffering since the age of 12 with migraine but just this past year became chronic. I am having a hard time with acceptance. I’m still working full time and of coarse no treatment is working. I have NO life. I feel so lost. How do I feel positive?? I read all your stories and you sound positive. How do I get there??

  • BethBlue
    4 years ago

    I was a Type-A, totally career-oriented, “all in” type of woman for years, commuting a total of three hours a day as an attorney . When my health problems were catching up with me, I changed careers at age 40, and went back to school for my master’s degree to become a teacher. It all came to a crashing halt when I had to stop working because chronic migraine disease was becoming too much for me to deal with on a daily basis. I have not worked in TEN YEARS. That’s right: I’ve lost ten years of income; building up retirement savings; being with co-workers; collaborative relationships; and exposure to the outside world in general because I’ve been drowning inside of this stupid, wasteful illness. I even waited to file for disability benefits because I believed I could climb my way out of it. I decided last year that I could no longer put it off. I was denied for benefits the first time around, and now I am waiting for an appeal hearing. I desperately want to declare my independence and scream, “HEY! Me and this disease? We are NOT related!” So yes, I absolutely know about the loss you are describing.

  • Cathi Wilkinson
    4 years ago

    I’ve lost months and years with my grandbabies….the thing I looked forward to more than anything in life and I’ve lost so much. My heart breaks just writing it! My chronic migraines didn’t start till I hit menopause……just in time for my grandbabies.

  • Jodiwadi
    4 years ago

    Woah, you’ve articulated so well so many of my feelings on migraine here dude! I’ve also had an extremely rough patch over the past few months health wise (all the harder to take after a really really good six months) so I know exactly how you are feeling.

    Here’s hoping things improve for you soon. Keep doing what you do; it’s really helpful to know that there are other chronic migraine sufferers out there who have the same thought processes that I do.

  • Maureen
    4 years ago

    I hear you (and I’ve been missing your voice). One migraineur in Delaware is thinking of you.

  • Lavonda Sullivan
    4 years ago

    Oh Kerrie, I feel so much for you. The same happens with me and definitely losing time is the thing I hate most about migraines. Its absolutely heartbreaking. I try to make my home my comforting sanctuary so at least the time I’m down is in a lovely comfortable place. My bed is a soft cloud of down comforter and squeezable pillows, and my sofa has the softest ever throw and wonderful throw pillows to prop up with or cuddle up with, with soft music I love at hand, so are favorite movies for when I’m up to it, and for me, I love cold snacks so I try to keep my freezer stocked with frozen grapes and fruit pops. I do a lot of daydreaming during those long, long times of isolation. If I’m dreaming of things I plan on doing it at least seems productive and that I’m not losing quite as much. I pray for all of us that better treatment is found soon.

  • Jenn Lebowitz
    4 years ago

    Hi Lavonda-

    Thank you so much for your kind words – and the fabulous ideas about setting up the home in such a comforting way! We are so glad you’re part of our community here. Wishing you our best

    Warmly,
    Jenn (Community Manager, Migraine.com)

  • kmripple
    4 years ago

    Kerrie,
    I am so sorry to hear migraines are back with such force. Thinking of you and sending positive vibes your way.

  • Nancy Harris Bonk moderator
    4 years ago

    Thank you for sharing this Kerrie. You summed up nicely what most of last week was for me – bed-bound.

    Positive thoughts heading your way,
    Nancy

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