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.
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