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A planned opened on the table with a cup of coffee above it. In the planner there is a strategic plan laid out on how to stay feeling better

What “Feeling Better” Means to Me

There used to be a time in my life when I thought I would get better. When I would wake up feeling refreshed and not fear that pain, discomfort and fatigue would steal away from my day. Growing up, doctors gave me a false sense of hope telling me that I would outgrow migraine. I truly believed that my adult years would be pain-free. However, everything turned out to be quite different for me.

Between the ages of 9 and 25 years old, I had episodic migraine. It quickly manifested into chronic migraine by the age of twenty-seven. The idea of “feeling better” was non-existent by then. Every day involved a significant degree of pain, disability, and frustration. There was hardly any level of feeling good, even on the “good” days. In order to feel better, I had to change the way I saw myself and my disease. Doing so greatly helped me to live a more fulfilled life despite chronic pain.

Creating a new normal

As cliche as it sounds, I had to create a “new normal” for myself. Nothing about my life was the same. I had to approach every task with care and concern and an almost strategic plan of attack. Everything about my day was completely different than how it used to be when I was episodic. Life’s pace was much slower and very calculated. I had to think everything through to determine if it was worth expending my energy. Many of the ways I used to handle things had to change and that was a tough reality to come to terms with.

Some of the ways I created my new normal was by –

  • Gauging how I feel every morning and starting each day with a breathing exercise. Taking into account how good or bad I felt allowed me to set up my day with reasonable tasks (or none at all if it required that).
  • Asking for help when I needed it. It is okay to seek assistance from friends, family, neighbors and coworkers.
  • Learning that it is okay not to be okay was paramount for me. My family still accepted me on my worst days and didn’t fault me for being in bed for a day or two or three. So, I had to give myself permission to accept that it comes with the territory and is not a bad reflection on me whatsoever.

Learn to say no

This was probably the hardest part of chronic migraine. I was so used to saying yes to everything. You would think that it would be easy to say no when you are living with daily chronic pain. Yet, it was the complete opposite for me. It was imprinted in my mind that I had to be everything to everyone at all times because I didn’t want to look like I was unreliable. During the lowest times of chronic migraine, my children were young and needed me 24/7. There was no such thing as sleeping in late or taking days off. So, I had to learn to compromise.

  • Saying no to having to cook every night of the week. It is okay if the kids eat cereal, sandwiches or pancakes for dinner some nights.
  • Saying no to the idea of being super mom. I do as much as my body will allow me to do and when I can’t, I have friends I can rely on to help me out. It’s okay if I don’t attend every girl scout meeting or parent-teacher conference.
  • Saying no to projects I just don’t have the bandwidth for. As a patient advocate, I am inclined to say yes to every opportunity that comes my way. However, sometimes I am just too sick or exhausted to do them all. It’s always hard to pass up on them (hello FOMO!) but it’s important to put my health first.

Take charge of my health

There are many things I no longer have control over living with migraine. Even though I manage my triggers and avoid activities that can bring on an attack, they still come. What I have learned to control is how I approach my treatments. Finding that my voice mattered in the relationship I have with my healthcare team was an enlightening experience. For years, I would feel intimidated by my physician and have tremendous anxiety at doctor appointments.

Once I realized that I had a say in what treatments I wanted to explore, it made me feel more empowered. Understanding that the physician/patient relationship is a partnership and not a dictatorship really opened my eyes. I could and should be an active participant! Doing so makes me feel like I am doing everything I can to feel better.

  • Incorporating cognitive behavioral health practices into my management routine helps me deal with the emotional aspect of living with a chronic disease.
  • Preparing questions for and having meaningful conversations with my headache specialist help me stay involved and informed.
  • Working with my headache specialist to create treatment protocols for the emergency room or hospital admission for DHE infusions has helped me advocate for myself in those situations and have a better experience.

I deserve some self care

Taking care of my needs does not make me selfish. If I don’t make sure that I am good mentally, emotionally and physically then I am no good to those who depend on me. It is never selfish of you to take care of yourself in whatever way you need to. Some of the ways I do this to help me feel better are –

  • Meditating whenever I feel overwhelmed, anxious or depressed. It helps put my thoughts into perspective and creates a more positive atmosphere.
  • Indulging in my favorite hobbies allows me to spend time doing what I love and creates moments where I can connect with what makes me happy.
  • Getting a massage or going to the nail salon for a manicure and pedicure always make me feel like I am doing something nice for myself.

Feeling better is a frame of mind when your body is on a completely different agenda. By sticking to those three concepts, I cope with and manage my pain, anxiety and depression in a much healthier way. Will I ever get to 100% again? Probably not, but I can certainly put my best foot forward in creating a positive outlook.

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

  • Mcyelle
    1 month ago

    Wow, thank you.

  • Joansie13
    2 months ago

    I do not want to burst anyone’s bubble but I feel that information is important. I had episodic migraines since my 20s and was later told that menopause would provide relief. I distinctly remember being in a bookstore and reading that this is true for some and not for others. My migraines increased as I went through menopause, and continue to do so. I am 70 now and have about 120-140 migraines per year, up from about 60 twelve years ago. Zolmitripan works for me but I have to be careful not to take it too many days in a row. I stopped trying to do everything with a migraine that I did without one years ago and I accept my life as worse than some and better than many. It is wonderful to see this disease getting more attention and better treatments. ❤️to all!

  • aks868
    2 months ago

    What a beautiful essay and so true! I too have learned to accept my new migraine reality. It took ten years, but the peace and strength that come with not beating yourself up for not being”perfect” or as “productive” as other people is so important.

  • Jaime Sanders moderator author
    2 months ago

    Thank you so much and I’m so very grateful that it has resonated so well with so many. It’s very true that peace and strength do come once we let go of the idea of being perfect or super productive 24/7. We are not like other people so, it’s only fair to give ourselves a break.
    Blessings to you!
    Jaime Sanders, Moderator/Contributer

  • Nikki23
    2 months ago

    Dearest Jaime,
    Your article warmed my heart 🙂
    I started reading your account and thinking, “This sounds like me…” I was told by my doctor that I would ‘grow out of migraine’ but it didn’t happen. To be fair – at least my old doctor gave me a false hope that I clanged to in the midst of the confusing, soul breaking pain and illness.
    The tone, I liked of you article was of empowerment, creativity and courage. I don’t like saying positivity because there was more to your words than just that… Its your journey…
    I feel that there is such a stigma and huge misunderstanding about this disease. Hopefully, with people like you, writing like this – others will learn to appreciate how difficult life is to navigate when being inflicted with such an unpredictable, hidden illness – but also – how inventive, ingenious and courageous people need to be.
    Bless your heart dear Jaime.

  • Jaime Sanders moderator author
    2 months ago

    Hi Nikki23,

    Your words have warmed my heart! Although I have found new meaning to my life, I still struggle from time to time because let’s face it, this life is hard. But, seeing such positive responses from my little article reminds me that we all have strength and purpose. I am extremely grateful to know such an amazing group of people in this community, including you!

    Jaime Sanders, Moderator/Contributor

  • tonytoshiba
    2 months ago

    Thank you for the article. Good information and I am sorry your migraines are so bad.
    Keep your hope up.
    In the future the migraines will pull back. Everybody I know has had them reduce or stop between 58 and 70 years old. Mine were so crippling I was sure they would never stop.
    Now I am in my early 60s. I still get some of the side affects, trouble seeing, thinking, trouble holding up my end of a conversation, stumbling, but,,, there is no pain. Well, almost, last week was the first in months when a pain storm pulled in.
    Keep your hope up! When you have a day without remember to enjoy it.

  • Jaime Sanders moderator author
    2 months ago

    Hi Tony,

    I was pretty much told by an old physician that I wouldn’t “grow out” of them until my 60’s so that has become my new hope I guess you can say. The side effects are just as crippling and disabling as the physical pain and I’m sorry you are still being affected by them.

    Thank you for your kind words of encouragement and I wish you all the best.

    Jaime, Moderator/Contributor

  • chels
    2 months ago

    Thanks for sharing this. It brings encouragement.

  • Jaime Sanders moderator author
    2 months ago

    You are so very welcome!

    Jaime, Moderator/Contributor

  • glassmind
    2 months ago

    Wonderful article. Thanks

  • Jaime Sanders moderator author
    2 months ago

    Thank you so much and you are most welcome!

    Jaime, Moderator/Contributor

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