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An All-Consuming Job

An All-Consuming Job

My job is the first thing I think about each morning. My work factors into every decision I make, from what I eat to whether or not I have sex. It wakes me up multiple times most nights. I never get a break from it. I can’t leave my work at the office after an exhausting day, nor can I escape it by taking a vacation.

While most people think my job is writing and working with the company my husband and I started, those are dalliances compared to my real job. That all-consuming job? Chronic migraine. (My experience is with chronic migraine, but feeling like migraine is a full-time job isn’t limited to those of us with migraine that meet the diagnostic criteria for being chronic.)

When my migraine attacks were at their worst, I expended enormous amounts of physical and mental energy to keep myself going. Others may have thought I was just lying in bed, but I was using everything I had to be sure I’d wake up the next day. To anyone who finds this melodramatic, consider that the World Health Organization has found severe, continuous migraine to cause the same amount of

I’m doing better now, but I still work constantly so I can hold on to this improvement (or hopefully, increase it). I spend my time monitoring my diet hawkishly, avoiding triggers, researching other treatments, trying to exercise to build up my physical strength, seeking balance so I don’t set off another attack, processing the enormous amount of grief that comes from spending so many years disabled.

My job will never come with the outwardly visible accomplishments, social stature, and wealth that society equates with hard work. But I’ve put in enough effort to be a self-made trillionaire.

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

  • maxgordon
    2 years ago

    This sounds so much like my life! I was diagnosed with migraines when I was 8—50 years ago. I am a writer/editor and I also suffer with chronic migraine. This, combined with rheumatoid arthritis, leaves me all but useless about 75% of the time. I still freelance when I can to supplement my disability somewhat, but like you I consider chronic pain plus “stupid brain” (near-constant inability to form 100% coherent sentences/thoughts) to be a full-time occupation. Like mrst53 below, I also feel as though I lost so much precious time when my son was growing up, and if I could have all the time back that I’ve lost to migraines since I was a kid, it would probably add a decade or more to my life.

  • mrst53
    3 years ago

    I was diagnosed at age 12, altho I had headaches before, thought to be “I was reading too much, I needed glasses”. I am now 63. At age 20, I went to Walter Reed and finally got some good medicine and a good diagnosis. I started keeping a diary, found some things I was allergic too. I am still fighting daily migraines, medicines stop working overtime or they stop making them. I use accupucture when I can afford it, but it’s expensive. I do go for pain shots in my face or my head and they do help for weeks and sometime months, for some types of different headaches. I was in a car accident in 2001 and I was hit in the face with a baseball in 1986, which can cause some wierd headaches and lead migraines. I feel like I missed out on a lot of my son’s life when he was growing up.

  • Kerrie Smyres moderator author
    3 years ago

    Thanks for sharing your story. Are you familiar with community acupuncture? They try to keep costs low and use a sliding scale: https://migraine.com/blog/acupuncture-save/. Wanted you to be aware in case it increases the frequency with which you can get treatments.

    Take care,
    Kerrie

  • Lisa A
    3 years ago

    Bless your heart! I follow your articles and I can just feel your suffering as well as your unrelenting great strength. I am sorry you endure so much. I feel like living with chronic M is a 24/7 job which leaves me weary and vulnerable. ICK. However, I have only been chronic for a mere 4 years. I have awesome family and friend support as well as finding a new headache specialist who is simply AMAZING. However, I still wish I could just take a vacation from myself and my condition some days. Living with an invisible chronic illness isn;t easy. Blessings to all of you who walk this same road.

  • Kerrie Smyres moderator author
    3 years ago

    Thanks, Lisa. Even four years is too many! I’m glad you have a great support system, but I do know the desire for a break lingers even with support.

    Take care,
    Kerrie

  • Endless Search
    3 years ago

    Kerrie,
    When I read your story about chronic migraine, I wanted to cry. I feel so alone in my battle against daily chronic migraine, which has plagued me for at least 25 years. I too rarely get a break from it. From daily nausea due to silent migraines to full blown head pain, it sticks to me like glue. I even wonder how it is possible for any person to be sick almost every day of the year and want to know how my body can betray me on such a consistent basis. This disease has brought me to my knees many times over the past 25 years. I struggle to know how to explain it friends and family and even to people in the medical field. I have been accused more than once of medicine overuse but that is unavoidable given the circumstances. It is an endless search for some miracle drug or combination of drugs that will just make this all go away and the deep disappointment when no such miracle comes along. I am so thankful when I have a ‘good’ day. It feels good to feel good! Thank you so much for sharing your story. It touched my heart and made me feel like I am not the only one fighting this relentless beast.

  • Kerrie Smyres moderator author
    3 years ago

    I’m sorry to see all you have gone through. You are definitely not alone. You’re in my thoughts.

    Take care,
    Kerrie

  • Writermom
    3 years ago

    Isn’t it wonderful to have a single day without pain or a silent migraine? Isn’t it wonderful to “feel good!” I very seldom experience that, also, Endless Search, so I know from where you’re coming.

  • Marcus
    3 years ago

    Truly one of the most brilliant analogies to describe the unrelenting, irrational and tyrannical assailant that passes largely as our invisible enemy. Hopefully it will help us better understand the enemy which takes residence like a squatter who refuses to be evicted.
    I think you also give us language to assist our life companions, our family and friends better appreciate the opportunistic mistress who compromises and sabotage our dearest relationships and supportive network. And how it saps whatever little physical, emotional and spiritual energies we might still have after trying to create a bit of space between this boss who threatens to consume us and any bit of sanity we might be trying to salvage!
    Again, thank you for your brilliant bit of creative genius which has further given voice to the madness which is our 24/7 “all-consuming job!”

  • Kerrie Smyres moderator author
    3 years ago

    Thank you, Marcus. Im glad you find it helpful, though I’m sorry you, too, have this all-consuming job nagging at you.

    Take care,
    Kerrie

  • Sandy Steubing
    3 years ago

    Like the others who have commented, I completely understand. Lately I’ve added ice cold baths to my daily regime of restricted diet, niacin and meditation. Even though I’m on disability for chronic migraines, I’m on day 16 without one since I added the cold baths to everything else I do. Thought I’d mention it in case you hadn’t thought of this treatment. Best of luck,

  • CarolF
    3 years ago

    So true for me as well. Can’t express enough gratitude to be able to read these words. Only wish I had found this community years ago. Finally able to lead a truly authentic life with greater confidence.

  • Kerrie Smyres moderator author
    3 years ago

    What a wonderful note. Thank you, Carol.

    Take care,
    Kerrie

  • Marysu
    3 years ago

    Wow! Thank you! I really needed to read this right now. I have had a headache for 50 years. FIFTY YEARS!! These days the intensity is less but like a bad boyfriend still hanging on. Still messing with what to take, what works better, what I still take because I wish it actually worked, what I stopped taking but learned it actually did keep me from being a full time bitch. 5-0 years!! Sigh…

  • Kerrie Smyres moderator author
    3 years ago

    Marysu, I’m so glad this was helpful for you, but sorry to hear you’ve been dealing with this so long.

    Take care,
    Kerrie

  • Endless Search
    3 years ago

    Thanks Marysu, you made me smile today!!

  • Marysu
    3 years ago

    @Endless Search No!! Not a nursing home! That is so off my options list! Could it be due to have worked as admissions director for two different ones? (Especially having to wait for a nurse to bring your meds would be awful. I’m an RN and have great compassion for my profession but it can be so hard on the patients when the floor goes nuts!)

  • Endless Search
    3 years ago

    Fifty years! Oh you poor dear. In my reply to Kerrie, I mentioned that it has been about 25 years for me. My fear is that this disease will follow me into my not so golden years and I will end up having to rely on staff in some decrepit nursing home to manage this for me. Now that is a true nightmare! Best of luck to you. Thanks for your post.

  • Macbeck
    3 years ago

    So incredibly well said!!

  • Sharon Beckwith-Johnson
    3 years ago

    Kerri-
    This one is very telling of what we do on a daily basis just to have some kind of life besides our caves that we build to escape from the outside world. The lights, noises, smells,the weather.

  • Timothy Bauer
    3 years ago

    Brilliant Kerrie!! That is why the migraine
    community needs you. Keep on being the
    one called Kerrie

  • Kerrie Smyres moderator author
    3 years ago

    Thank you both, Timothy and bluebird! It’s so nice to know my words resonate with you.

    Take care,
    Kerrie

  • bluebird
    3 years ago

    Thank you for all that you do for the community. Your posts have offered me so much support. Your perspective helps whenever I need it…and with chronic migraine that could be very day.

  • Maureen
    3 years ago

    And when you are doing your hardest work, to the world it looks as if you are doing nothing and you are least able to verbalize what it is you could use some help with, or you least want to share what it is you are spending so much energy on. I totally get this.

  • RBarker
    3 years ago

    Story of my life & so comforting to know I’m not alone… I went through the worst in high school, so everyone thought I was just another “lazy teenager”. I finally got my CM under as much control as I can about 2 years after graduating high school (14 years after diagnosis). Now I have a bachelor’s & I’m working on an associate reasonably pain free!

  • Chrissy
    3 years ago

    Thank you! You put into words exactly how I feel. I cried as I read this to my husband.

  • Kerrie Smyres moderator author
    3 years ago

    Thanks for the kind note, Chrissy. I’m sorry you can relate, but glad you found this article helpful.

    Take care,
    Kerrie

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