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My Migraine is a River: Coming to Terms With My Chronic Illness

My Migraine is a River: Coming to Terms With My Chronic Illness

Nearly all of us with chronic illness know the feeling of constant struggle. There is the fight to move through your day normally and to do the usual tasks that need to get done. There is the fight to go out and do your job, run errands, be social, to not let friendships die; to stay in tune with your partner. The fight with insurance companies, the Social Security office, emergency room doctors. Not to mention the difficulty we face when contemplating big life goals like trying finish college, finding a great job, going to grad school, or moving across the country. Or across town. When you’re always sick, everything is harder.

But I was also fighting the illness itself.

For me, it was the worst after Zo was born, in 2009. When pregnant with X in 2004, I had become chronic, but was managing to keep my head above water. I had always had severe, frequent migraines, so more than fourteen per month didn’t feel too different. But when I began having daily pain, and no more days when I felt normal, I began to panic. Part of it was my fear that my daughters would never know me as more than an inert form in a dark bedroom, and part of it was how difficult my life had become, in many ways. I became determined to find something to fix me. I had already tried every available preventative, as well as Botox, chiropractic care, biofeedback, physical therapy, and medication detox. I began to try all those things again, and then some. My wonderful family doctor worked hard to arrange a visit for me at the University of Michigan, a somewhat nearby huge hospital with a stellar reputation, which she was finally able to do. I pinned all my hopes on that visit, just like I had pinned my hopes on Botox working this time, ten years later (spoiler alert: it didn’t). But the assembly line neurologist in the big machine of University of Michigan didn’t even glance at the history I typed up for him. He was highly dismissive, didn’t look me in the eye or listen, gave me one nerve block injection (which I wouldn’t know until later wasn’t at all effective) and told me to soak in epsom salt baths. While maybe that epsom salt advice could have been helpful for occasional comfort, or something, I summarily rejected it because I had wanted fantastic new ideas, fancy advice to go with the fancy diploma on his wall, rather than something that might as well have been an internet meme. A bit of respect would have been nice as well.

After attempting and giving up a gluten-free diet, trying two more Botox treatments, and taking FMLA to undergo a full hysterectomy, I finally had to resign from my position with the local Parks & Recreation department. I thought I would just be taking some time off, but I remained too ill to re-enter the workforce. [A quick note about the hysterectomy: I will undoubtedly at some point dive into the story of my peri-menopausal, post-pregnancy menstrual migraine nightmare and the controversial idea of hysterectomy to ease it, but not today.]

So I stayed home, spent time with my little daughters and my husband, and I slept, and I blogged, and I read and researched and joined online support groups and slept and read some more. I knew a lot about migraines, but what I hadn’t known was how to advocate for myself. I felt that if I took the reins of my illness, made sure I had the tools to treat it properly, I didn’t need to struggle so hard to get better. I would just be me, with migraine. I would embrace the headache. I would maintain. I would float.

Slowly, I began to think of my lifelong migraine disease as a river. Swiftly flowing, sometimes dangerous, certainly always changing. There were lazy quiet sections, but also rapids and waterfalls. And for the past several years, I had been trying to swim against the current. I was struggling, and fighting, and trying to get out of the river. But instead I was drowning.

So, just a couple of years ago now, I began to try to tread water, swim with the current, and float. Floating wasn’t always easy, and the transition was difficult. I managed to construct a raft, but rafts fall apart, and hit rocks. I lost a doctor in a painful way, and returned to my long term renowned neurologist / headache specialist, who insisted on changes I bravely attempted but which didn’t work. My family went through financial difficulties that were nearly insurmountable because my SSI payments were only an eighth of my former salary. My marriage and friendships went through painful adjustments.

But over time, my increased education on medicine and migraine, my online support, and my new determination to be my own advocate became less like a raft and more like a boat. Sure, the river was still my home, but I was no longer frantically kicking and screaming and swallowing water, or even hanging on for dear life. I could accept my illness, and maintain it as it was, and live to the best of my ability while continuing to educate myself and others. And once I made this big internal shift, I felt more at peace. No, I didn’t magically get better because I had stopped fighting. Far from it. But I did open myself up to a lot of new possibilities, and one of those possibilities was participating in a CGRP study. And three years later my life is markedly different. Still filled with pain, and fatigue, and lots of frustration at times (for example, I still haven’t figured out how to demand respect from a doctor who is loathe to give it). But I am far, far happier. I like myself, and my life, a lot better. Sometimes, I even realize the river isn’t all that bad. It eroded me, weathered me into the person I am: someone who is compassionate and perceptive; flexible and resilient.

I do want to make it clear that by accepting migraine as part of my life, I am not stating anything as simplistic as “I just developed a positive attitude and felt better!” Don’t you love those condescending recommendations? How about, “Just ignore your pain, and you won’t notice it as much!” I hate those platitudes as much as you do. No amount of positive thinking can diminish a neurological disease. While mindfulness can help, pretending your pain doesn’t exist won’t make it go away. And while it’s true there is no cure, there is always, always reason for hope. I didn’t stop looking for new treatments or stop seeking a better future. I didn’t even stop missing the days when I was only “light chronic” or the halcyon days when I had fewer than three migraines per week. But I did make peace with the role of illness in my life and embraced migraine as part of what makes me who I am.

My boat, as it floats down the river, has a soft comfy blanket and pillow, a heating pad, lots of bottled water and Cherry Coke, and a therapy dog. My boat’s medicine cabinet is well-stocked. My boat has a laptop and a flawless wireless router. What does your boat have? Or maybe it’s not even a boat, maybe it’s… a treehouse, high above the treacherous jungle? Feel free to tell me your experiences with fighting and accepting migraine disease in the comments.

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

  • aks868
    3 years ago

    Dear Elizabeth,
    Thank you so much for your article. It’s funny–a few months ago I thought I had come to terms with having chronic migraines, but the past few weeks, I think my raft (to use your analogy) has been falling apart. On the advice of my neurologist, had been stripping away many of the meds I use in an effort to figure our which one works. The latest trials have have failed, so my raft has gotten a bit wobbly. Time to build a new one!

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi Aks2868. I’m sorry it took me so long to respond to this. I hope that your new raft is holding up well! Best, elizabeth

  • Not-Again
    3 years ago

    Hello and thank you for your post. It seems I am headed into the river but fight getting in the boat. I am in Texas and you must be out of work for 1 year before you can be considered for disability benefits. I am single and my own source of support, so taking a year off is not an option. Do you have any recommendations for someone in my position? I do not have any family support in my migraine life. I am afraid of drowning soon. My migraines have gone from episodic to daily and am starting with a new pain management specialist this week. Any recommendations appreciated. Best wishes of peace and grace to you!

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    i am so sorry that you feel so unsupported. i think donna’s suggestions are good ones, and i hope you will consider us support for you as you go forward. i hope your pain specialist appt goes well. take good care ~elizabeth

  • DonnaFA moderator
    3 years ago

    Hi Not-Again. I’m sorry to hear that you’re in this place, it can be very scary. Please know that we are here to share support and information and that you’re not alone. You may want to check the financial programs offered by the state of Texas to see if you may be eligible for benefits.

    I’d invite you to check our articles on financial tips and assistance programs. I’d also like to invite you to check out our Facebook page if you haven’t already.

    We’re glad that you’re here and we’re sending you sincere wishes of peace as well. -All Best, Donna (Migraine.com team)

  • Cocodog
    3 years ago

    A river is a beautiful analogy of the migraine trip. A great Empath I know suggested I trust the wisdom of the body. Don’t fight the migraines. And flowing with the river illustrates this point. It’s a horrible disease full of many lessons I was ignoring before I became disabled. I consider my 9 year
    Illness as my ” dark night of the soul”. Now the sun may be rising as I prepare to follow the flow. Or I might be having a pity party tomorrow. But the flow is a goal to strive for.

  • DonnaFA moderator
    3 years ago

    Hi Cocodog, thanks for sharing that lovely analogy. It kind of speaks to the need for self-care, which for most of us, is such a hard thing to do.

    We’ll be thinking of you as you start your journey in the sun, and look forward to updates! -All Best, Donna (Migraine.com team)

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    I sort of feel like an empath myself sometimes. I hope your sun rises soon! And you know what, occasional pity parties are okay. Thanks so much for your comment and take care! Good luck following the flow.

  • mrst53
    3 years ago

    Last nite, was the 2nd Tues I missed my favorite CBS shows :-(. It’s the weather and I can’t change that. I went to bed at 7:30 and thought it would go away by midnite, but at 2 am I woke up and I thought my head would split in 2. Today, my head feels like it 3 times the size it should be. There is headache yet, but it feels like it could come back anytime and the skies look like it could pour down at any time. I hate missing out on life, but until it starts raining and keeps raining, My headache will be in a holding pattern too… just waiting to start hurting.

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    I’m sorry you’re suffering right now. I have had a very tough time the past week or so, but yesterday and today I’m finally doing a little better. And what do you know, it finally poured rain here 🙂 I’m very affected by weather too. Take care.

  • Pikasum
    3 years ago

    Dear Elizabeth,
    Thank you so much for posting this. I felt myself tearing up; this is my story. I became a daily/chronic sufferer after the birth of my second child, had to go on disability, went to Michigan only to meet condescending jerks who recommending nothing, have fought some serious battles with ER doctors, and am fighting daily to hold my life together. Reading this article on Facebook convinced me to join this community. It was a relief to know my experience wasn’t totally unique. My mother was also blown away by your story. She called me and said, /”Oh my God! That’s you!” So – thank you, thank you.

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    Oh, you are so welcome! I’m not happy that you’re suffering too but I am happy that this piece spoke to you and prompted you to join us here. It’s such a wonderful community. And how interesting that our migraine journeys have taken such similar paths!

  • mela14
    3 years ago

    I just joined this support group and this is the first thing I read. It all sounds so familiar. Thank you for sharing your story. I have had migraines for 43 years. Wow, I can’t believe I said that. They have changed throughout the years and I now several types of migraines. Chronic Hemicrania Continua being one of them. At 57, I have finally gotten to the point of “this is my new life” and not feeling so ashamed of my illness. I still have a long way to go but am so happy I found this website.

  • Joanna Bodner moderator
    3 years ago

    Hi mela14,
    We are SO happy that you have found us! Welcome and we hope you find our community/site as a great resource & most importantly a place to come for support. Thanks for taking the time to comment. Also, if you’d like feel free to check out our Facebook page where you can connect with with many others as well.

    -Joanna (Migraine.com Team)

  • Elizabeth Roberts-Zibbel moderator author
    3 years ago

    We are very glad you’re here! It’s interesting that this is the first thing you read on our site, because it’s also my first real article, as I am a new contributor. I hope you find migraine.com as helpful as I have over the years! I’m so glad you’re no longer ashamed.

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