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Woman wearing hoodie peacefully smelling a rose

The Neverending Question of Pacing

Why can’t I learn this lesson? So many unexpected lessons have come from a life with migraine. This disease has taught me to rethink who I am. It has shaken me free from the way I once defined myself. Formerly, I primarily saw myself through the lens of my profession. Now disabled from my career, I assess myself more by how I live, rather than what I do.

I also live now with gratitude at the forefront of my mind, rather than as an afterthought. Migraine makes me painfully aware of all I’ve lost and therefore acutely thankful for what I have left. But when it comes to pacing, and learning how to care for myself on good days to avoid overexertion and the pain that can follow, I just can’t seem to learn.

I want it all the rare days I’m pain-free

I’ve had migraine for 40 years now; 15 chronically. I’m enormously emotional about the issue of pacing. And I know that when emotions run high, the pain underneath runs deep.

On a day without any pain related to migraine (which rarely ever happens), I want to do it all. I want to walk, garden, be outside, and engage in all the world has to offer. A friend recently asked why I can’t just do a little extra on my good days in an effort to avoid a full-blown migraine attack the next day. The mere suggestion made me cry uncontrollably. Why? It’s too difficult to limit myself on good days because I simply don’t know when the next attack will happen. For me it’s quite possible that I won’t have another well day for a month; maybe three.

Chomping at the bit to run free

On my well days, I feel like a stallion just released after being confined in a stable for months. Wellness is having that stable door flung open on a beautiful day; my body yearning to run free across the fields and pastures. Pacing would be akin to just standing there, or taking a few steps out of the stable before turning around and going back in, and waiting for the door to shut behind me.

Living in fear

Holding back from galloping forth on a pain-free day can feel akin to living in fear rather than in the moment. It’s easy to be too afraid of potential repercussions to act. But, instead of seeing it as living in fear, perhaps I need to think of it as living smart. After all, it’s illogical to knowingly take actions that will cause oneself pain. And for many of us, overdoing is a well-known trigger for pain.

This is one of those issues that is difficult for people who don’t live with chronic pain to fully comprehend. To someone not living with migraine, the answer is simple. If you have a disease that is set off by overdoing, then live within limits. Why in the world would you want to risk triggering more pain?

Random acts of migraine

One reason that it can be difficult to enforce limits on good days is that with migraine disease, it’s just as likely that doing absolutely nothing will result in a day of extreme pain the next day anyway. Sometimes no rhyme or reason can be found for why an attack hits. So, why hold back? Tomorrow is likely to bring pain regardless of my actions or my restraint.

Some things are worth the risk

Here’s my reality: I cannot often go out as often as I’d like; take regular vacations; go on adventures; or, see the world in the way I wish I could. My pain dictates what I get accomplished each day. I’m unable to show up for my family in the way I want to. I miss out on countless events. So, even if it is not always logical or smart, on my rare well-days, regardless of the risk, I’ll continue to throw my arms open wide and embrace all the world has to offer. The emotional health and perspective I gain from doing so are absolutely worth it. So, there’s my answer, I suppose. Perhaps I have learned the lesson: for me, pacing doesn’t apply.

Do you take care not to overdo on the days that you feel well? How does pacing apply in your life?

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
    2 weeks ago

    Exactamont!

    A freed stallion. The unknowing. The migraine that comes even when one has been cautious. The desire to accept risk for some measure of joy.

    All so true.

    I have learned to be more measured in my approach to life.

    But yes, on some well days, I do throw caution to the wind and run free.

    And sometimes, I get away with it.

    Which is almost, almost worse.

    Because, then I continue to think “I can do it!”….And then I fail.

    Ah, but better sometimes to have loved and lost than never to have loved at all, yes?

  • Holly Harding Baddour moderator author
    1 week ago

    Hi @glassmind! Lovely to hear from you. I had just used the “’tis better to have loved” quote in another article-(https://migraine.com/living-migraine/cost-wellness-affording-cgrps/) so was so timely of you to use it here!

    Thank you for your beautiful reflections and insights, as always. Grateful for your prose and thoughtfulness. So very glad you’re here.

  • glassmind
    1 week ago

    <3

  • glassmind
    1 week ago
  • Holly H.
    3 weeks ago

    I love how real you are, Holly; what a gift!
    I am a home-bound senior with constant/chronic migraine and clusters. I get out typically once, maybe twice, in a week, since starting oxygen therapy (before that, migraine plus clusters had “brought me to my knees”). Being old, I am more attuned to my little apartment being a nest, a place of safety, a place of controlled environment and stimuli, a place where I can put into my day what I can, a place where my four and a half foot oxygen tank is every 6 hours. I so feel for the not-old folks for whom sheer pain and systemic effects dissolve their ability for their home to be their home base in which and from which to move about freely!
    One thing frequently comes to mind: “I am so alive deep inside, and so not on the outside. How much would I love to add lively life to my life?!!” Therefore, I am with you in that when I do get out and about, I’m going to soak up all the lively life I can. There is always pain, but a bit of lively life feeds my starving heart and soul.

  • glassmind
    2 weeks ago

    Yes! Our souls must dine. (:

  • Holly Harding Baddour moderator author
    2 weeks ago

    Hi Holly- I’m so grateful to connect with you here. Thank you for sharing about your life. It’s very helpful for me to picture the lives of others- all of us navigating this challenge of migraine- muscling our way through each day. The unexpected strength and fortitude that emerges from us- while, yes- sometimes bringing us to our knees.

    Glad to hear you’ve found a therapy that allows you to get out and about and embrace all you can when you’re able to do so. I think many of us can relate to your description of nest. This, perhaps, has less to do with age, and more to do with the condition of migraine – begging us all to create safe, controlled spaces- with dimmed lighting- no strong smells, temperatures we can control, and on and on. Our homes become a huge part of how we manage this migraine life- they provide us our respite- our place to refuel – and to wrestle through our pain in private. I’d surmise that homes, for migraineurs, hold far more weight, in importance, than for most. And I, like you, can’t imagine, the aging process removing me from my nest- most especially due to all the healing comfort it brings.

    I love your term “lively life” – that part of you that wants more air. I so join you in that, Holly. I felt it today just picturing you getting out and about. I bet we have more lively inner lives and imaginations than most. And because we get out and about less than others, we are nourished more easily by less stimuli. In other words, it doesn’t take as much to fulfill us. A breath of fresh air, feeling a wet leaf in my hand, having a lovely exchange with someone like you- sometimes that can get me through the day. Thanks again for writing. Hope you’ll stay in touch.

  • glassmind
    2 weeks ago

    It is perhaps those with chronic illness who most greatly appreciate a wet leaf in the hand, a madeline on the tongue, soft fur against the cheek, a heart shaped stone, the colors in an oil slick.

    Strange blessings. Strange indeed.

  • mcfinn
    3 weeks ago

    Holly,
    This article really hit home. You speak my reality.
    When I have the rare good day, I am flying. My wife thinks I should pace myself but like you, it matters not whether I do or don’t pace myself, there’s no guarantee that the next day will be another good one. Fat chance of that. So it is reassuring to know that it’s not just me who sees no reason to pace myself on a rare good day.
    I enjoy your articles, Holly even though I rarely feel well enough to comment.
    Thank you.

    Mary Colette

  • Holly Harding Baddour moderator author
    3 weeks ago

    Hi Mary- Thanks so much for taking the time to chime in. I’m so glad this piece resonated with you and appreciate the kind words regarding other articles as well. It is so nice to know we’re not alone in our approaches to this bizarre and incredibly demanding migraine life, isn’t it? It can feel so isolating, this disease- so I also find it reassuring to hear from you that this is your experience as well. Please stay in touch when you’re well enough to do so. Otherwise, nice to know you’re quietly out there, taking care of yourself.

  • MelanieM moderator
    3 weeks ago

    Thanks so much for your thoughts, Mary. It is so true that the other side of pacing yourself is that you just never know when a migraine might strike despite your best efforts due to a different trigger. I hope you have some good days coming soon! ~Melanie Merritt (Migraine.com team member)

  • bluesguy
    3 weeks ago

    Hi Holly, thanks for the great article. I very much relate to the life that you describe. I am sorry that you have lost so much. I too have lost my former identity. Migraine has taken my career, my semi- professional work in music, and many of my avocations. Also I have lost my commitment to a fitness program, as I am too ill to go to the gym due to chronic migraine. My life has completely changed. I still have trouble with embracing gratitude in the face of being disabled by multiple illnesses (migraine being the most disabling). How do you hold on to gratitude in the face of all you have lost? Thanks so much for the time and energy you put into each article. I appreciate you.

  • Holly Harding Baddour moderator author
    3 weeks ago

    Hey @bluesguy– so great to hear from you, as always. I’m glad to see that @melaniem already responded- but I of course wanted to write you myself as I’m grateful for our exchanges. You and I share a history of working in music and being sidelined by chronic migraine. We’ve also talked in the past about the impact of this disease on family life. It is a challenge to find gratitude in the midst of loss, and there is grieving involved. For me, finding gratitude involves embracing a philosophical approach- as I speak about in the article- to be conscious about what I do have- and to think more about how I live (and how I love) rather than what I “do” – our world is so wrapped up in output, and for me I try instead to focus on a different definition of output– how am I caring for my family and friends, whenever possible. Secondly, for me, it is about trying to live day by day- not getting too tangled up in looking too far in the past or future. What has today gifted to me- sometimes it’s something very small- but I try to recognize those even small things. I guess akin to a gratitude journal- but for me it’s one I keep in my mind, either through pictures, or recordings: https://migraine.com/video/snapshot-of-wellness-challenge/

    Hope that might resonate with or interest you. Please share with us what you have found that works for you, and we are grateful that you are honest about the challenges. This is a hard road- and you are not alone as you travel on it. I’m so grateful you are staying in touch. Keep at it- and I will too.

  • MelanieM moderator
    3 weeks ago

    bluseguy- I am not Holly, but I wanted to say that your comment resonates so much. Most of all, your question of how you hold on to gratitude in the face of everything that we have lost. It is natural to wish for a life that looks different than our lives with chronic migraine look, and cultivating gratitude can be hard. I do think it takes a conscious effort to cultivate gratitude. I wanted to share a couple articles with you (these aren’t by Holly, but they are by Kerrie, who is someone whose migraine journey I really personally admire as well): https://migraine.com/blog/daily-gratitude/ and https://migraine.com/blog/giving-thanks/. I hope they are helpful to you. Thanks for sharing with us. ~Melanie Merritt (Migraine.com team member)

  • rosie716
    3 weeks ago

    I love the phrase, “Random Acts of Migraine!” That’s exactly how it is. Sometimes I never know when or why I’ve gotten a migraine. I am meeting with my PA in January to discuss new treatments that are now out there.
    Do Trigger Point Injections really help anyone?

  • Holly Harding Baddour moderator author
    3 weeks ago

    We have a forum dedicated to the topic of Trigger Point Injections: https://migraine.com/topic/trigger-point-injections/ And here is another resource on the topic where our community members discuss experiences with the therapy: https://migraine.com/topic/occiptital-trigger-point-injections/. Hope that helps and so glad to hear that this article resonated with you.

  • migrainessavedmylife
    3 weeks ago

    Hi, I don’t know what trigger injections mean? Can you please define…I’ve had migraines for 12 years (chronic, status).

  • migrainessavedmylife
    3 weeks ago

    I have had these..just didn’t know what they were called!

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