Robyn Neilsen

Lessons from a Migraine Girly.

Hey friends,

Why is learning how to say no so hard?

Also, why is finding the right way to start this blog so hard??

Any way

I’ve been in bed for two days with a migraine. (I mean, what’s new, am I right?) And I’ve had a lot of time to think.

I’ve had migraines all of my life. Literally. I can remember being 7 years old with a migraine. And if you’ve read my blogs before, you know that migraines are a frequent topic of conversation here.

The conversations I’ve had surrounding them are…interesting. Lots of people giving their tips and tricks (peppermint oil on your temples, squeezing the skin between your thumb and index finger, etc.) Lots of people asking, “Do you know why you get them? Can’t you just take a pill and the pain goes away?”

Technically, yes.

I never considered myself to be chronically ill until other people labelled me as such in my adult life. And yet…AND YET…people don’t truly seem to understand what it means to be chronically ill.

I feel like I am forever fighting my body to show up in ways that sometimes it just can’t. And if I push it to go beyond its limit, it forces me to sit down. Mind over matter don’t work on my side of the island.

This morning, when I realized another day was going to be spent wiling away in bed, I took out my journal and started to write about the immense guilt I felt. There’s cleaning to be done. And dinner that needs to be made. And lessons to post. And then I turned to earlier journal entries and realized that this guilt was a pattern. Every time I had a migraine, I felt guilty for giving myself the space to rest.

So, I decided no more. Here are some things I am giving up as a chronically ill person.

1. I will no longer feel guilty for having a flare up.

When you have a chronic illness, you don’t plan when you are going to have a flare up. Which means that sometimes you wake up and all your plans go directly out the window.

I can’t even tell you how many times I have had to cancel plans the morning of or right before because I suddenly got an aura and couldn’t drive or needed to be close to my bathroom because my nausea wouldn’t let me leave the house. And we’re not even talking about the immense head, neck, and shoulder pain that makes sitting up straight next to impossible.

And you know what makes the pain and other symptoms worse? Worrying that the person you have to cancel on isn’t going to understand that you’re sick.

Even if you don’t have plans, the guilt over having to spend yet another day in bed can be destructive in and of itself.

And if we are supposed to be resting, how is guilt and anxiety going to facilitate that?

It’s not.

So, I’m giving it up. No more guilt. What’s the point? It’s not helping anyone. It’s not making anything better. So, I’m putting it down and accepting that some days are going to be rest days. Period.

2. I will listen to my body and give it what it needs.

There’s a bit of shame that comes with being chronically ill, as if you were the one to create the illness.

Sometimes we push out bodies beyond what they want to do until we suddenly find ourselves in an attack.

I know my triggers but sometimes push beyond them because circumstances require me to do so. Like this past weekend. I was out every day having late nights and a lot of social interaction. By Sunday, I knew I was going to pay for the inconsistency in my sleeping and eating schedule. And what do you know? Here I am in bed writing this blog with a migraine and some rocking nausea. The fact that NJ is currently experiencing a heatwave doesn’t help.

In life, there will be times when circumstances require us to go against what we know is good for our bodies, i.e. celebrations and such. And I am not saying that we shouldn’t show up for those milestones in the lives of our friends and family. However, and this goes back to my first takeaway…

You are allowed to say no if you need to WITHOUT GUILT.

You are allowed to attend and create space for rest days WITHOUT GUILT.

See, my problem is that even though I’ve had migraines for 30+ years, I still act like this is not a chronic illness that’s going to knock me on my ass if I disrespect my needs. So, while this weekend was busy, I thought, “It’s fine! I can eat and sleep off schedule all while drinking alcohol and still have all the energy in the world this week.”

Spoiler alert: that’s not what happened.

So, here I am. Listening to my body. I ordered breakfast and lunch (I know what you’re thinking…IN THIS ECONOMY!?) I’m going to drink more water and take a nap because MY BODY NEEDS IT. And I am going to do all of these things without guilt. Because even though this is my today, this isn’t my everyday. And if it’s my tomorrow, then we will take it as it comes. Maybe that’s more rest. But either way, our bodies deserve for us to listen when they are telling us what they need.

3. If I have to cancel plans, then so be it.

As a lifelong people pleaser, this one is tough because it often times means disappointing someone.

However, I am no fun when I am having a migraine attack, let me tell you.

And the thing I have learned over time is that: the people who love and respect you GET OVER IT.

Really, truly. They do. 100% of the time. And if the person who you have to cancel on won’t let go of the fact that you had to cancel because of your chronic illness, then maybe it’s time to reevaluate that relationship.

Believe me. No one wants to miss out on fun because they are in pain. I love my bed, but there’s only so much bed rest one can take before they “want to be where the people are”, ya know?

But if getting better so you can enjoy more fun stuff requires rest, then so be it.

Final Thoughts

I think all of this boils down to one major take away: LETTING GO OF GUILT.

Having a chronic illness isn’t fun. It means pain. It means exhaustion. It means inconsistent energy and a whole host of uncomfortable symptoms.

So, today, let’s get rid of guilt. Let’s rest when our bodies need it. I certainly am.

Until next time, friends.

Posted by:

Robyn Neilsen

I am a writer and educator based out of New Jersey. My creative nonfiction essays and flash fiction stories have been published by Thought Catalog, Vocal Media, and On Mogul. As a lifelong learner, I enjoy honing my craft through writing workshops with LA Writers Group, Gotham Writers, and The Moth. I am currently querying my first novel and am actively working on my second.

6 responses to “Lessons from a Migraine Girly.”

Just D.

July 7, 2024

I haven’t written for ten years owing to chronic illness, and I was an obsessive writer. 1000 words, at least per day, every day, on top of anything else I may have done, for twenty years. Until last week when an old friend asked me to write for her. She needed to be told a story – it’s a terrifying thought. I’d avoided writing emails all this time … it changes everything, when you stop exercising a part of yu which was so intrinsic from teen-years, through first work, university, set-backs, through teaching and beyond. I’m going to find a way to discuss it somehow.

Thank you for this. I don’t think I’ll ever get over being ashamed and embarrassed of what I am now. But I’m working on it. You’re a better man than me.

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1. Robyn Neilsen
  
  July 7, 2024
  
  My friend, your story is an incredible one. And even if you haven’t written for 10 years, you are still a writer. What you have accomplished in your life time with your writing (so far) is nothing short of spectacular. 1000 words a day, at least, for twenty years on top of living your life?? What a major success! Chronic illness is the absolute worst because there are only so many things we can control when it comes to triggers and flares. I am so sorry your chronic illness has put you on a hiatus, but you have NOTHING to be ashamed of. Guilt is a sneaky little devil. And you have done nothing wrong. I commend you for what you have done and what you will do. : )
  
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  1. Just D.
    
    July 9, 2024
    
    It means a lot that you take the time to reply. I used to teach, write courses, prepare learners for higher education, whole design curricula which was aspirational and progressive. I used to hit small white balls around beautiful landscapes, alone, early in the morning while working on my coping strategies for my new reality. I still don’t feel my writing is ‘real’ iin the way it used to be, because I’m not writing primarily for myself.
    
    Do you ever feel there’s an unreality to everything, that life can’t possibly be a broken or mad as you perceive it; that perhaps it’s just a reflection. I know it’s not really like that. But I do despair at the state of things, even if I try not to let it affect me.
    
    I appreciate there’s a voice like you around.
    
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  2. Robyn Neilsen
    
    July 9, 2024
    
    Your musings on perception are interesting. I once had a boss who used to say she liked getting colds. (I hate getting colds.) When I asked her why, she said that it reminds her that she’s alive. In fact, she felt this way about all illnesses. She was 85 or so at the time, and lived until she was well into her 90’s. Whenever I have a chronic illness flare up, I remember what she said and consider it as part of my life experience. Having a chronic illness has taught me a lot about myself.
    
    You may not feel like your writing is “real” right now. But at some point, when you aren’t paying attention, there will be a shift and suddenly, your writing will feel real again because it will be for you. Sometimes we need someone else to take out of our heads or give us purpose. But then it always comes back around and the thing you were doing for someone else ends up being the thing you do for you.
    
    When it comes to perception, we can only see the world how we see it. You know? Your thoughts and feelings will shape how you see things. For me, it depends on the day. When my anxiety was at its worst, nothing felt good. But right now, the world is looking pretty okay from over here.
    
    And thank you for your kind words! : )
    
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Just D.

July 8, 2024

Would you mind terribly if I apologise – I wrote “man”, instead of “person” in my original comment. I would’ve caught it second time round (I kind of did!)

Thank you for the lovely words. I’ve had to learn to accept compliments—I used to be really bad at being able to say thank you—it’s the strangest thing. And I know you’re right, intellectually, but my goodness, I hate the person in the mirror: It kind of looks like me, but not enough to fully buy in to the fact that, yes, that’s me now.

The shame factor is a weird one. I know, I haven’t done anything wrong. My bones weren’t up to snuff and my muscles were a problem (maybe), but I trusted my surgeons, did the rehab; worked the problem, and sometimes, the results just hurt more when they’re supposed to be getting better.

Instead of keeping up with the work, I chose to avoid the pain, until sure, not everything’s turned up to eleven, but now I’m this weakling that can’t really do much because it’ll mean cranking that pain back up.

I can cope as long as I don’t have to think of myself truthfully – does that sound bad? I have such a deep seated loathing for the choices I have. I pretend not to think about them. It’s not the healthiest option, but I keep it, my problem, and not someone else’s. To tel you the truth, had you not written, EXACTLY what you had written, I wouldn’t have even thought about this.

My therapist (former) would be loving this.

Thank you, thank you.

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1. Robyn Neilsen
  
  July 8, 2024
  
  No offense was taken by your use of the term “man” instead of “person”. : )
  
  There is so much shame and guilt that comes with chronic illness. And the grief. Oh the grief for all the should haves, could haves, would haves. And the shame. Feeling as though something should have worked but isn’t. And the fear that you’ll put yourself in a flare that will last for who knows how long. Those three things ON TOP OF the pain is enough to keep one in bed and immobile until, hopefully, the tide of emotion turns. (That has been my experience, anyway, waiting to feel better emotionally, least.)
  
  And no one talks about what it’s like to look in the mirror and not recognize yourself. Again, in my own lifetime, I’ve had to do a lot of grieving over the me I used to be.
  
  In the midst of all that shame and guilt and grief, the you (and me) we are now is just another beginning in a sea of beginnings. Beginnings are scary and hard (and I secretly hate them) but eventually you get to the middle and there’s pride there over what you’ve (we’ve) accomplished.
  
  I commend you on facing this and thinking about it when it’s the last thing you want to think about. It’s a start to the unraveling of the things that have kept your voice small. One step is still a step. And you’re doing it!!
  
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