Dear friends and family: sometimes I cancel plans when I feel good (a confession)

Dear friends and family,

You have been so extraordinarily patient and understanding with me over the years, especially in relation to my migraine attacks.  You are supportive of my Avid Bookshop work and understand when I can’t make it to your afternoon party because of a bookstore shift. When I worried that having so many migraine episodes might mean not being able to run my own business, you helped me find ways to take care of myself while still achieving my lifelong dream of owning a bookstore.  You might not realize it, but I know that, at least at times, you probably resent my illness since it steals away time we could be spending together. You are angry with migraine for its negative impact on my health, and I agree with you: it is a thief, a kidnapper that whisks me away even when I want nothing more than to be present in the moment with you.

I have a confession to make that may surprise you, though: sometimes when I cancel plans or simply say “no” to an invitation, it’s not because I feel bad.

I say no sometimes because I am feeling so good.

Wait just a second, you think. If you’re feeling so good, isn’t that the perfect time to socialize and spend time with me?

In a perfect world where time and energy are limitless, I’d agree with you. But let me explain why I sometimes skip out on social time with you when I am feeling really healthy and strong.

You see, migraine takes away so much of every aspect of my life, from hours I could be working to afternoons I could be reading to weekends I could be hanging out with you. One night I may create a to-do list for the next day, hoping to spend the first half of the day writing. When I awake, it turns out my migraine brain has different plans and I can’t write at all due an attack.

So when I am feeling good, really good, my first inclination may be to finally call you back and cash in that rain check from when I was sick the week before.  We could go for that swim or grab that happy hour cocktail.

But, about a third of the time, I use my time in another way: I catch up on other aspects of my life.  While I’m sick and unable to work or play, my responsibilities don’t exactly disappear. Instead, they stack precariously, one on top of the other, until the tower leans and threatens to crash to the ground.  On this tower is every type of task you can imagine: paying bills, responding to emails, writing essays, reading books, cleaning the house, booking doctor appointments, running errands, making dinner, and hanging out with YOU.

Sometimes I have to just take care of other items in that stack before I can get to you, and that’s no reflection on how I feel about you. In fact, tending to other must-dos helps me calm down and re-center, which means I am more at ease and relaxed when it comes time for us to finally get together and catch up.

I hope you’re not mad hearing this.  Living with frequent migraine, migraine that has lately hovered right on the border between episodic and chronic, has been hard on me and has made me far less productive than I want to be. I want to be a more prolific writer, a better sister, a more present daughter, and a loving wife. I want to spend enough time alone to feed my inner introvert, and I want to spend enough time with you to connect in the ways that help make our friendship so special. And I want to find the time to connect to my work as a bookshop owner, something that brings so much meaning to my life.  There’s just never enough time, and I’m doing my best, promise.

I love you.

-The Migraine Girl

Do any of you readers out there identify with this? I expect this post may rile some of you up, and I say bring it—I want to have an open conversation with you guys about the problem/blessing of having migraine-free time and too many things to choose from to do in that time. Please comment below! 

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

View Comments (25)
  • Mrs Diehl
    3 years ago

    Everything in this post and comments resonates with me. But the thing I think everyone must consider is that friends want to spend time with YOU – it doesn’t matter WHAT you were doing. So instead of taking time away from friends to do the tasks that you can’t do when you have a migraine, why not ask friends to do these things WITH you. This is a very difficult thing for me because I am a curious combination of both of my parents: my mother who would have a party at the drop of a hat, and my father who was so introverted that he once wanted to be a forest ranger so he wouldn’t have to deal with people . When I include my friends I my tasks, it is a blessing for both me and my friends. If you feel that you are taking time away from things that they need to do, make an exchange and agree to do something for them next time. I know for me just having someone else around helps me to get things done more efficiently. So it wouldn’t even matter to me if it was a task that I didn’t need help with. Ask them to bring something that they don’t need help with just to be able to spend time with you and for you to spend time with them. I wish you all joy and a pain free day!

  • k_nelson
    3 years ago

    I agree. Sometimes it does seem more enjoyable to get back to some real life than going out with friends. I am only 16 though I often find myself liking to clean up my room or go for a run after a migraine than hang out with friends.

  • 287l9kr
    3 years ago

    WOW! This is exactly me and how i feel. i am sorry that you deal with this horrible affliction also, but it is some how comforting to know that it is not just me. i often feel, weak or inadequate because of all of those things that stack up and my inability to just “work through” the migraine.

  • Jules2dl
    3 years ago

    Thank you for such an honest post! Sometimes I too say no to an outing when I am feeling fine in order to get something accomplished. Mostly, my family and friends just assume I’m turning them down due to migraine, and in a way, that is true isn’t it?

  • Writermom
    3 years ago

    You are absolutely right, Janet, about everything you said. Most of us don’t have anyone to come in and take care of things while we are down with the migraine. And many things require our personal attention, anyway. And what about our own enjoyment? Yes, we love our friends and appreciate them so much, but we, ourselves, must treat ourselves well, too. Even if the weather is nice outside, and some weeding is way past due, go out and pull those weeds! You’ll feel so good having accomplished SOMETHING! That is much more satisfying than visiting with friends just because we feel we have left them out of our lives for a while. With chronic daily migraines, there is so little time and so few days that we feel up to doing ANYTHING. We need to have the discipline to say no to some things, or hold them for another time, and do what we know MUST be done and would be satisfying to us. Keep on doing what you’re doing, Janet.

  • Erin Kenny
    3 years ago

    Wow! I never would have the nerve to say this to my family, but boy does it ring true.

    For the past 17 years I have been chronic, so it has only been a matter of whether it was a really bad migraine day or a mediocre migraine day. For the past month I’ve been on new meds and have started having some migraine free days and I’ve noticed that I jealously want to do what *I* want.

    Also, while I *can* be extroverted, after a certain amount I need some “me time” where I don’t even want to look at anyone (my family included).

  • The Migraine Girl moderator author
    3 years ago

    I firmly believe you have to take time to really take care of yourself if you’re going to be a good friend/sister/daughter/wife/mom/brother/etc. to anyone else. I hope you continue having more migraine-free days!

    Take care,
    Janet G.

  • Diana
    3 years ago

    Dear Janet “The Migraine Girl”,

    Once again, my thanks to you. You have a gift for writing. Every word has value. I was just wondering…. I saw you mention “time alone to feed my inner introvert”… not that I know that you are/are not a true introvert but it did give me pause. I believe migraines made me more introverted than I might have been without them. I was wondering if anyone else out there felt that their migraines had perhaps created a shyer or more introverted you?

  • The Migraine Girl moderator author
    3 years ago

    Diana,

    I wonder about intro- and extraversion all the time! Any time I’ve taken a personality assessment, I’ve ended up being an ENFP with a capital E, but I always was frustrated with how hard it was to answer the introversion vs. extra version questions on such quizzes. “Would you rather spend time with your best friends at a party or read a book alone in the tub?” How can a girl answer such questions when the answer changes (or if you want to yell, “both!”)? I have definitely become more introverted over the last few years, and I’ve wondered if it’s a matter of maturity or if it’s related to migraine. It’s possible I also get a ton of my extrovert needs taken care of when I’m at my bookshop chatting with people, so I am less social with friends and therefore consider myself more introverted even though I spent hours and hours in the public eye. It’s a mystery!

    I’d love to read some of your writing–have you ever posted your story here on the site?

    Thanks for the kind words and for being here. <3

    Take care,
    Janet G., "The Migraine Girl"

  • Karen
    3 years ago

    I can’t tell you how wonderful it is to read that someone approaches their “good days” the same way I do!! I so rarely have a good day, and when I do, I have so many things fighting for my attention that it can be crazy. So often I say yes to friends or tackle housework, but every once in a while, it feels so good to shut the world out and just read a book… Catch up on my favorite TV shows… Or just spend the evening with my husband. Right now, I suffer daily with debilitating migraines, so when the pain eases, I want to do things that make me happy. I miss doing those things.

  • The Migraine Girl moderator author
    3 years ago

    Karen,

    It felt great to write this post but I was very nervous about its being published. Thanks for the validation and for admitting you know what I’m talking about! I hope you’re feeling well today. Here’s to taking care of yourself.

    Cheers,
    Janet G.

  • Diana
    3 years ago

    Amen! Oh so true. Your writing is spot on and also very comforting.

    Since this disease is not always visible (although the way we look sometimes speaks volumes) we will struggle with interpersonal relationships. People don’t get it.

    When chronic migraine was at it’s peak in my life I so longed for a normal day just for me with no obligations to do as I pleased with no pain. Sweet relief is sometimes sweetest when I’m alone free of obligations. Because we know obligations can bring on the wicked migraine.

    I’m 64 and have struggled with migraines since I was 5. We are so fortunate to have this forum and on-line resources.

    I laughing used to tell my brother … “Who knows, I might have been president without migraines!” Whether we like it or not chronic migraines do shape who we become. They sometimes limit us. We hate the control they have over our lives. We don’t want it to define us but it sort of does. However, migraines can also help us develop other attributes: speaking truth in the face of disbelief and sometimes scorn (a real character builder) compassion beyond measure, and a sense of humor that helps you face the world and yourself.

    I’m lucky, i have finally found the main piece of my migraine puzzle. It was gluten! Who’d have ‘thunk’ it! If I avoid gluten, chocolate, milk (oddly I can any kind of cheese) and red food dye…i’m in pretty good shape!

    Hope this info helps someone else like so much of the info here has helped me.

  • Susan C
    3 years ago

    Wow. Thanks for sharing. I was so motivated before my migraines went chronic. I was a single mother who had a career. I bought my own home by 25, my second at 32. A family member would say, this girl is going places. Now at 41, I’m unemployed and unable to work. My future is uncertain. I thought I’d be in the middle of my real estate business, traveling and helping my parents. So I struggle with the “what could have been” a lot.

    As far as friendships go, I wish I could say I haven’t lost friends along the way but I have. Before chronic migraines I was the go-to person in many relationships. Eventually as I was not able to meet people’s needs, some abandoned ship. I do understand it but I constantly worry about what I’m not able to do for everyone else. I do decline invitations on both good and bad days because I simply have to but it always leaves me with a sick feeling in the pit of my gut and a nagging feeling that I’m just not doing the right thing.

    Thanks for sharing everyone!

  • The Migraine Girl moderator author
    3 years ago

    Thanks for sharing your story and kind words, Diana. I have also wondered what I could’ve done if migraines weren’t part of my day-to-day life. I love this quote from your comment especially: “However, migraines can also help us develop other attributes: speaking truth in the face of disbelief and sometimes scorn (a real character builder) compassion beyond measure, and a sense of humor that helps you face the world and yourself.”

    I can’t tell you how genuinely happy I am that you have figured out some of your most villainous triggers. Fingers crossed you can get to feeling good more days than not. Take care, and thanks again for your comments.

    -Janet G.

  • Karen
    3 years ago

    So strange… this is the 2nd time in about a week that someone has mentioned gluten. Definitely going to take this seriously! I’m so happy you found the main piece of your puzzle. I’m still searching for mine. I think my cat ate it… 🙂

  • 23r1c5h
    3 years ago

    Good grief, sweetie – word for word how I feel when I’m having good days and just want to spend time catching up on everything that’s been tossed to the side during an attack. It’s amazing how that tends to work, I didn’t realize just how full my life and schedule was until my migraines began – now I’m left wondering how I ever managed to pull it off when I was healthy.

  • The Migraine Girl moderator author
    3 years ago

    Stacey A.,

    Your comment just made me want to give you a hug! Thanks so much for the validation and for taking the time to comment. I appreciate hearing that my feelings aren’t totally weird and rare. Take care of yourself; I hope you’re feeling good today.

    -Janet G.

  • Jess
    3 years ago

    Thank you for putting into words what I have been thinking for years and inadequately able to express. I too want to put this on Facebook (and give you total credit!) to help my friends and family understand.

  • The Migraine Girl moderator author
    3 years ago

    Thanks so much, Jess. Do feel free to share the post–you know we here at Migraine.com are 100% behind getting people to talk more openly about this illness and get friends and loved ones to understand the intricate ins and outs of living with it.

    Take care; I hope you’re feeling well today.

    -Janet G.

  • stacysillen
    3 years ago

    This is a great description of life. You put into words something I just do without really thinking about it. Pacing myself and playing catch up when I’m good.

  • The Migraine Girl moderator author
    3 years ago

    Your comment and compliment mean so much to me, stacysillen. Thanks for taking the time to reply; I’m glad this piece hit home for you.

    -Janet G.

  • Tammy Rome
    3 years ago

    This is brilliant! I will certainly pass it along.

  • Nicci
    3 years ago

    May I just copy and paste this wonderful post into an email blast to my family and friends? I promise to credit you!

    I’d add a note to my nephews: “Boys, Aunt Nicci loves you so much. Most often the 3.5 hour drive intimidates me as I’m often afraid I will get sick while visiting and have problems getting to you, or home. Being around too many people, lights, sounds, smells and your incredibly obnoxious grandparents (whoops) really kill me. And the food! There’s a lot of great cooking… full of triggers I know, and some I don’t. I’m not there often enough… and I’m sorry that being sick is the pointless reason! ‘menopause’ won’t mean anything to you until your wives experience it. That’s about three or four years for me, though. You’ll be mostly grown up.”

    I’m so sorry for all of you who are apologizing to your own children. By the grace of God, I don’t have any. Tough enough to have nephews — and a new boyfriend I’m afraid won’t want to ‘deal’.

  • The Migraine Girl moderator author
    3 years ago

    Nicci,

    Please feel free to share the post. If you do copy and paste, it’d be best if you could include the link when you mention me and the site as well. Who knows? Maybe your friends and loved ones will actually click the link and start exploring on the site a little bit and learn more things about this illness.

    Your note to your nephews made me tear up *and* laugh. You sound like a wonderful person; thanks again for your comments. Let me know how your family responds!

    -Janet G.

  • Karen
    3 years ago

    I read the last sentence and I just had to say something. I have a daughter who grew up with a Mommy who always had a headache. She is the kindest and most sweetly sensitive person I have ever met. She loves being the “Mom” to her group of friends (She is 25) and is always taking care of others. I am also blessed to have a husband who “deals” with a lot. I didn’t start having migraines until we had been married for four years. He’s been by my side for every test, through medications that we found out I was allergic to by a trip to the ER, and he’s been so kind and understanding when we’ve had to cancel dinner plans, day trips, etc… There ARE wonderful men out there! I am keeping my fingers crossed that your new boyfriend is one of the wonderful men who love the good days AND the bad days. You deserve nothing less. 🙂

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