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Not the Life I Wanted

Not the Life I Wanted

  • I have a migraine attack every time I eat or drink anything but plain water. Every. Single. Time. That is not an exaggeration. Even plain sparkling water is a migraine trigger.
  • I fall asleep having no idea if I will be able to function the next day. Before I get out of bed each morning, I must first assess whether I am physically able to do so. When I do get up, it’s with the knowledge that I could be laid up with a migraine attack any time during the day. Starting to go about my day then returning to bed 15 minutes later because of migraine attack is even more demoralizing than not being able to get up in the first place.
  • My fatigue is so severe that I daydream of getting a walker to get around the house. I have yet to make the purchase because I fear I will feel even more disabled than I already do. I also daydream about having a toilet installed beside my bed.
  • The very basic tasks of life, like taking out the trash, checking the mail, grocery shopping, or making dinner are often beyond my ability. Sometimes weeks pass between times I step outside the front door.
  • I go months without seeing—or even talking to—friends or family.
  • Quality time with my husband means watching TV.

Given that list, do I even need to tell you that I did not choose this life? Still I was taken aback when the words this is not the life I wanted sauntered through my mind. Of course I didn’t want this life. No one in their right mind would.

The list of losses I have endured due to migraine is so long that I can’t even remember them all without writing them down. I spent many years lamenting those losses and hating how migraine changed my life. Unsurprisingly, this did nothing to improve my migraine frequency or severity. It did not make me more functional or less disabled. It didn’t enable me to spend more time with loved ones. It made me angrier and sadder. It left me feeling utterly helpless and hopeless.

When the despair became too much to bear, when everything I knew to do to change my physical health had failed, I sat with two choices: suicide or finding a way to cope with migraine. Before you balk at the word “cope,” let me tell you a quick story. A reader once sent me an angry email that said, in part, “I don’t want to hear about coping. I want the pain to go away. I DO NOT want to cope with it.” That email voiced a truth that I’m sure is universal. No one wants to have to cope with migraine; we all want our migraine attacks to cease. Even those of us who talk about coping as if it were a lifeline want to be sans migraine.

I am in that latter category. I talk about coping as if it were a lifeline because that’s what it is for me. Coping is what keeps me hanging on when I feel like I’m out of options. I, and many of my fellow coping evangelists, have discovered that coping eventually becomes a bridge for us. By learning to cope when all hope feels lost, we somehow develop the strength to find new options, to try new treatments, to get relief big and small.

I still work every single day to find effective migraine treatment. I work even harder to cope with migraine’s affect on my life. I search for any little bit of good that my days bring. I maximize every moment in which I am functional. I laugh as often as I can. Instead of wallowing in how horrible every severe attack is, I distract myself with something pleasurable. When the gloom overwhelms me, I remind myself that the sorrow is transient.

The dark thoughts still come sometimes.

This is not the life I wanted.

When that thought visited me recently, that’s all it was: a thought. It did not ensnare me or twist me up in ugly ruminations of hatred, hopelessness, or despair. Instead, I acknowledged that this is not the life I wanted, but it’s the one I have. My life contains immeasurable pain; it also holds tremendous joy. Sometimes the former overshadows the latter, but the beauty is always there. Even when it’s hard to see.

This is not the life I wanted, but I’m going to do everything I possibly can to make it as good as it can be, even with chronic migraine. Doing anything else would feel like letting migraine win.

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

  • glassmind
    4 weeks ago

    Thank you for such a touching tale of your experience.

    Migraine has driven me to suicideation at times also.

    Yet, like you I’ve chosen to “cope”. I tend to use the word “accept”.

    I accept that I have Migraine. I cope and continue as best as I can.

    This debate between cope and fight exists in many health communities.

    For me, I found that choosing accepting and coping was a relief.

    For one it was a choice I could make when Migraine limits my other choices.

    It also released a lot of energy. I spent a lot of energy on denial and fighting. With precious little energy after and between migraines, Iblike spending it on time with my loved ones, hobbies, heck even housework or errands.

    I can lament that my life is reduced to little more than the basics, or I can see the positives. The basics is a dream for many living complicated and stressful lives.

    Migraine has further simplified a life I’d already simplified to accommodate other conditions.

    Yes, I still do wail in grief and self-pity at times. Having Migraine sucks, and I permit myself those moments (and reach out to others if they get too dark).

    And yes, I mostly just cope. Happily.

    Being a full-time patient/fighter was just wearing me down faster.

    Maybe it’s acquiscence. Maybe this is my preparation for the ultimate loss.

    Who knows?

    Acceptance and coping work for me. I overcome by adapting, rather than fighting.

    Thank you again for sharing.

  • kelly banks
    4 months ago

    Very well stated. We all suffer to varying degrees and sometimes very debilitating! I am also disabled my my migraines and two other diagnoses. We sure as hell didn’t choose this life but I too focus on the joys, my kids, family, husband, and pets! I don’t dwell on what I missed I live in the present and enjoy the good days to the fullest knowing the bad days will come! I don’t worrying about them I just deal with them when the come.

  • Macbeck
    3 years ago

    Such an incredibly meaningful post!! While my life isn’t spent in daily pain, I do deal with double and triple vision on a daily basis, not to mention Vestibular Migraine which significantly messes with my balance every day. My neuro didn’t react to my balance issues (hello – I just started using a can to help with vertical orientation!) until I likened my daily life to walking on a moving train.

    Looking back recently I realized that I’ve likely had migraines since childhood. One of those places our brains won’t go while we have to push through life every day, so one of the good things about being disabled. Yup, I’ve always been nicknamed Little Miss Tra-la-la in the family, and I’ve also been called a Terminal Optimist. I’ve almost always looked on the positive side of things, so after selling my car because I could no longer justify the expense of owning it, my friends know I’m almost always up for getting out of the house, even if I’m just accompanying them on errands.

    Nope, I never asked for this. But I also choose to accept and work with what is instead of fighting it, because fighting it will only make me feel worse.

  • DonnaFA moderator
    3 years ago

    Hi Macbeck, we’re glad the article spoke to you. Thanks for being here and for sharing your thoughts and your enthusiasm! – All Best, Donna (Migraine.com team)

  • GiGiW
    3 years ago

    This describes me so perfectly! And I do have a walker (well a rollator) to help me get around! And like you it made me feel more disabled, until like you, I decided I needed it to cope with daily life… I even gave her a name (Proud Mary!) I attend a group Counceling session every week with others suffering from daily pain. Someone (I think it was the facilitator) recommended that every day think of one thing that does not hurt, a finger, ear lobe, hair etc then focus on that one thing that doesn’t hurt rather than what does hurt. Sometimes it helps, but most times it does not… But I keep trying! Instead of the normal New Years Resolutions I focus on the things I’m grateful for! I increase the number yearly! This year I’m going to write them down and put them in a jar to reflect upon at the end of the year ( I saw this idea on Facebook)
    Happy New Year to all! Praying 2017 is good to all of us, less pain, better coping skills, more love and gratitude then last year.

  • glassmind
    4 weeks ago

    Think of one thing that doesn’t hurt.

    Good advice!

    I had an accupuncturist tell me once “If you can feel it when it hurts, you can feel it when it doesn’t.”

    I forget sometimes to focus on the bits that feel good or at least neutral.

    Thanks for the reminder!

  • stephdw
    3 years ago

    Your words have inspired me to believe if I write about my own experiences, maybe the pain could have some meaning by touching others. Thank u so very much. I felt as tho perhaps u had been living my life while i read it.

  • GiGiW
    3 years ago

    Me too!

  • Kerrie Smyres moderator author
    3 years ago

    What a compliment, stephdw! Thank you for sharing how much the article helped you.

    Take care,
    Kerrie

  • GiGiW
    3 years ago

    This is also my life! And after 2 years of a non stop headache I am learning to cope also. Most days my migraine is a 7 out of 10… Although I want to stay in my dark bed, I make myself get up and do at least 1 productive activity! An additional activity that makes me fearful is driving… One of my auras is everything looks foggy… And I never know when it will hit… Once it hit while driving… I could not see I tried to pull off the side of the road and ended up hitting a fence…because my depth perception also stinks!

  • Andrea G.
    3 years ago

    I’m so thankful for you and your candid words, Kerrie. I’m living one day at a time or else I’ll get super depressed and in despair. Keto diet helping and mega avoidance of triggers (and other things too long to mention here). So, even if I can get to less than 15 a month, the pre and post dromes are markedly apparent and I’m in full time alert avoiding triggers which is a full time job. I spend extra time thinking and double checking myself with math (checkbook!) and optimizing timing to do certain tasks when my brain is working better. Filling my med planner in the morning? Forget it, I’ll later be wondering how things got in the wrong places. Add two young children and a divorce, oh my. I do relish the quiet moments though and learning not to feel guilty about maximum self-care and all the money spent on health. Grateful for disability pay but still daydream of my former fun and more ‘normal’ life. God never wastes a hurt, though, and I’m beginning to be a good testimony and support to others. BTW, thank you for Theraspecs! Wish there were an option for a darker coating. I’m using my outdoor pair with another larger over-the-glasses pair.

  • Kerrie Smyres moderator author
    3 years ago

    Hi Andrea, your mention of a keto diet jumped out at me. Are you doing a basic weight loss ketogenic diet? If so, you might want to consider doing a medical keto diet. There are varying levels of diet, but the all contain more fat that the weight loss diets. Having more fat puts you deeper into ketosis… since the one you’re on is helping a little bit, maybe diving a little deeper would help even more.

    Finding information on medical ketogenic diets can be tricky. I did mine with a dietitian’s guidance and don’t think I could have done it without her. To find a dietitian who knows about medical keto diets, check for those who work with epilepsy patients. There are also a couple people who will work with you via webcam.

    I don’t mean to foist unwanted advice on you. I hope this information might be helpful. If not, feel free to ignore it!

    Take care,
    Kerrie

  • Joanna Bodner moderator
    3 years ago

    Hi there Andrea G.
    Thank you for sharing with us. You mention some of the most challenging aspects to living with this debilitating condition. I am so sorry to hear how much you are enduring. I am very happy to read however that you are realize the importance of letting go of guilt and that self care certainly needs to be a priority! That can be a big obstacle to overcome. Simply by taking the time to share your personal story migraine story with us you are definitely serving as an amazing support to others…keep up the great job of maintaining this positive attitude!

    Also, in case you are interested, here is an article we have on Theraspecs. Many within the community have commented on finding much relief with use of these glasses. If you’d like, I’d recommend contacting their customer service to let them know you’d be interested in an option for a darker coating. I see their contact info is listed on their main page.

    Thank you again for being so open and honest with our community. We love hearing from you and please always feel free to reach out!
    Wishing you a pain free night.
    -Joanna (Migraine.com Team)
    .

  • Shelly
    3 years ago

    I pray for your continued strength. You are a beacon of light for all of us. Thank you for sharing this.

  • Lorraine Waxman
    3 years ago

    I definitely relate to what you have experienced and written about with such clarity. When menopause hit, I not only had my first ever headache, but it was also a migraine. It became a 7/24/365 nightmare. It never, ever leaves. After a few years and many attempts at various remedies, the very last med suggested was Lyrica, with which I now have a love-hate relationship. It masks my pain for the most part so I can function. The hate part is that the side effects are really terrible, especially my mangled memory….so I now use half the dose recommended, have some migraine relief, and my memory, while still affected, is much closer to normal.
    The thing is, I love life. Even if it hurts unbearably, I still want to see my granddaughter’s play, my grandson’s regatta, and relish the smiles upon all the faces I love. Never give up or in….

  • Julie
    3 years ago

    This is beautiful and so true! I can definitely relate.

  • Jojiieme
    3 years ago

    Kerrie, we’re so fortunate to have articulate writers such as you among our advocates and mentors: you give voice to our fears and daily reality as well as demonstrating courage and persistence that many of us need but often feel we can no longer find in our reserves.
    I’m lucky, I’m in a gentler season now apparently, with less struggle and disruption to contend with daily. But when it hits, it still knocks me around! I learn grace, good humour, patience, and some useful strategies from mentors such as you. Please know that yours may be a quiet life, but it’s not ‘wasted!!

  • Holly H.
    3 years ago

    Once again, Kerrie, you speak to me. I am so visual and I find the “fighting against” what is (24/7 migraine with aura for years, and now with my 4th type diagnosed this week) to be stunningly exhausting in itself. “Fighting” drains off my tiny bit of energy, and “against” just keeps me in a state of opposing. So when I find myself going there, I picture myself stepping outside of that mode – a stepping away as it were, taking some deep breaths, and telling myself that although my body is certainly not OK, that the deep-down me is OK. I hope that makes sense. It might seem trite, but it puts me back into a more peaceful place time and again.

  • Hope and a Prayer
    3 years ago

    Where, oh where, is my magic wand? I would wave it over you and everyone who visits and shares their stories on migraine.com. You’re absolutely right that “no-one in their right mind” would want this life, that ironically can leave us feeling as though we’ve lost our mind. But when I get angry at this life that has been forced on me, I find I only get more miserable. Really, migraine on its own is enough misery. So, I’m trying to accept what is. (emphasis on “trying”) When I just breathe and stop fighting then the pain lessens as my muscles, my face and forehead and temples relax and I become a little more comfortable. Acceptance will never cure me, but it can help me come to terms with my “new normal” and I can translate the energy it takes to stay mad into being happy and finding solutions. But …. I’d still like a magic wand.

  • Tammy Rome
    3 years ago

    Thank you for your candid words. I found a lot of myself hiding between the lines. {{hugs}}

  • Yonko
    3 years ago

    Beautifully written, Kerrie. You give voice to those of us facing the challenge of incorporating pain into our lives.

  • jackold18
    3 years ago

    I can identify with much of what you’ve written. What I hate about migraines is not knowing when they’re going to strike and how long the effects will last; sometimes I feel fatigued for up to 5 days after the pain has gone. I’m using Feverfew at the moment and think (fingers crossed)it might be helping. I wish there was a magical cure out there for every migraineur!

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