“How To Live Well With Chronic Pain And Illness” Chapter 2: A Not-T0-Do List for the Chronically Ill

I am a huge list makers. If you looked on my phone right now, you’d probably be overwhelmed and confused by the number of lists I have saved. Some of which are extremely random and I don’t remember making.

Living with a chronic illness, I have a mental to-do list running at all times to help me steer clear of increasing the severity of my pain. But this whole chapter in “How to Live Well With Chronic Pain and Illness” is about making a not-to-do list. Here are a few:

  • Do not spend your energy worrying about how others view your medical condition
    • this is one I struggle with constantly. I am always worrying about if people think I’m faking it, or exaggerating my pain. I worry if they think I’m just lazy because I turn down opportunities to go hiking, when really, it would make my head near explode. I worry that people will think I’m no fun because often I have to turn down happy hour invitations because alcohol causes my head to scream. I also always worry that when people see me dancing around and laughing, that they will think I’m “better” and that I don’t have a headache. When in reality, I always have a headache, I just often put my personal enjoyment ahead of them and often put up a front that I’m ok. Just like any other thing in life, we cannot put our focus on how others view us or think of us. What matters is what we know to be true and how we see ourselves.
  • “Do not treat disheartening or discouraging thoughts or emotions as permanent fixtures in your mind”
    • so often I hit dark days when I worry about my life in the future and that I will be feeling sick every day for the rest of my life.These days often entail gloominess and the blues. It’s normal to have these types of discouraging thoughts, especially on days when our pain is at its worst. Do not condemn yourself for these thoughts. These thoughts are not permanent. The blues shall pass and the light will shine through again.
  • “Do not ignore your body’s pleas to say no to an activity”
    • It’s extremely hard to turn down offers to activities that we know will make us feel like the healthier people around us. I remember countless times where I have accepted offers and pushed my body just because I didn’t want FOMO. But, each time without fail, my body ended up paying for it later on. In the moment, it’s easy to forget about the pain. Sometimes, I even forget that my headaches are there due to my excitement or adrenaline. But once I stop moving, trust me, they remind me that they’re still there. The pounding in my head is usually so bad I almost (and likely do) cry. Don’t push your body past its limits. Sometimes on special occasions, if we feel comfortable knowing we will most likely pay for it later, it’s ok to say yes when we know we shouldn’t. But overall, it’s important to stay mindful to what your body is telling you.
  • “Do not put your pre-illness life on a pedestal”
    • this one stuck out to me the most. Almost every day I think to myself “I just wish I could feel like I did x  years ago when my headaches were not a constant.” I daydream about the days where I was exercising daily, partying like a normal young adult sometimes does, and just living life without worrying about setting a reminder for my 3 doctor appointments for the next week. But the thing is, life is always changing. What once brought us joy may not bring us the same kind of joy any longer. Take a look at where you are now, what you’ve accomplished and who you have around you. Ask yourself, did you have these things in your pre-illness life? Most likely, you got to where you are today because of what you went through in the past. And I bet all of you have some really great accomplishments to be proud of and a lot of people who are there for you day in and day out. Put that life on a pedestal.

If you’re like me, than you are your own biggest critic. People like us have a tendency to be hard on ourselves and have a very tough time letting things from the past go.

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Let’s make a promise to ourselves to focus on the good that we have in our lives now, instead of fretting over what we’ve lost from the past.

 

 

Things I’m Good At, Thanks To My Chronic Headaches & Narcolepsy

 

I’m really good at:

  1. Sleeping. My spirit animal is sloth.
  2. Making plans and then backing out last minute. Just because I hate doing it, doesn’t change the fact that I’m awesome at it.
  3. Collecting. I collect prescriptions, vitamins, test results, and doctor business cards
  4. Talking. About anything–doesn’t have to be health related. I’m just really good at talking.
  5. Showing compassion. Having endured years of chronic pain, health issues, emotional roller coaster rides, mental hardships and more, I find it really easy to feel compassion for other people and their journeys and struggles. I also just really like seeing people smile, so that’s more motivation.
  6. Surprising people. With my unexpected knowledge of various medicines, methods, symptoms and diagnoses. I promise I won’t walk in and pretend to be your doctor though.
  7. Enjoying time by myself. Because of how often I have to cancel plans or stay in and rest, I’ve learned how to truly enjoy and appreciate my own company. It actually kinda confuses me when people say they don’t like spending time alone. Like–I think I’m super cool, why wouldn’t I want to hangout with me?
  8. Picking myself up after a fall. More often than not, I’m the only one who can get myself up again after I’ve taken a hard fall in my health journey. Everyone will fall down in life, but we only truly live when we’re getting back up again.
  9. Managing pain. I don’t like to toot my own horn, but I’m pretty damn impressed by myself and my strength. I have continued so many activities while enduring my worst-pain level headaches/migraines and I never know how I did it once it’s over.
  10. Really enjoying life in all of it’s beauty. Life will never be full of only sunshine. There will be storms and we will get rained on. But each time the sun comes out, my smile gets brighter and my love for this world gets greater. Enjoying the simple things in life, putting more of my time toward seeing people who lift me up and doing more of what sets my soul on fire are all things I have seen myself get better at doing.