Chiari - Reducing Triggers

Will this make me cough? 

Will this make my head hurt? 

Is seven too early to go to bed? I just want to get away from the world.

Will I ever live without pain? 

Why am I always sick?

 

These are the types of questions I don’t have to ask myself anymore. I’m here to say, loud and clear for anyone listening: Chiari doesn’t have to rule your life. You can take it back, one moment at a time. There’s so much more to life than an affliction you can’t control.

But you HAVE more control than you think.

What triggers your symptoms? What questions do you ask yourself before you decide how to spend your time?

At my worst, pain ruled the day. I did anything to avoid it, which usually meant doing anything to avoid the cough that triggered it. For many years, that looked like this:

Prescription asthma medication (pre-Chiari diagnosis)

So, sooooo much cough syrup

Drinking wine

Calling in sick to work

Avoiding parties

Avoiding friends

Avoiding family

Avoiding any kind of gathering

Shrinking my world

 

And the more I avoided the things that triggered the cough, the smaller my world became. Reducing triggers has become one of the most important parts of living well with Chiari. BUT living in constant fear of those triggers didn’t serve me. It only served the pain. The more I withdrew from people and situations, the worse I felt.

 

I could never make my world small enough to avoid the pain.

 

In doing an inventory of my life, I knew there were many ways I was living WRONG. After I stopped taking all my unnecessary asthma medication in 2016 and started feeling slightly better physically and hopeful for the first time in years, I began making changes to how I was living to feel better overall. Some of these, consequently, also reduced the cough triggers.

 

Reduced chemical use: This deserves its own post—or several—because of the massive difference it made, both with the Chiari and my general health. Some of the steps I took to reduce chemical use included:

 

  • Replacing most harsh/toxic cleaning supplies with natural/less toxic counterparts.

  • Eliminating all traditional air fresheners, both plug-in and aerosol, and replacing with essential oils.

  • Removing all triggering perfumes and heavily scented personal care supplies from my daily routine.

  • Trading Swiffer WetJet for a Bona cleaning system—which is very similar to Swiffer except the Bona has washable/reusable cleaning pads and you can add whatever floor cleaner you want to the soap cartridge.

 

Addressed/Reduced Stress: Stress was a major trigger. Just the other day a hiccup with my health insurance sent me into a rare and unexpected coughing fit. Reducing stress is so broad a topic and looks different for everyone. For me, the quick version went something like this:

 

  • Quit well-paying but soul-sucking job with a huge corporation in a giant building with no natural light and poor ventilation.

  • Began a job in line with my personal values. There were still times of stress, but I had more control over how to deal with it. The job paid less money and I went from full time to part time, which isn’t feasible for everyone (I didn’t think it was feasible for me either, but it worked out).

  • Started meditation practice—mainly through guided visualizations by Dr. Joe Dispenza.

  • Started writing again.

  • Went to Reiki sessions (a form of energy healing) every few months.

  • Took time for myself to connect with the parts of my soul that needed healing (much more on that later).

 

Improved physical health: Since my biggest pain trigger was from coughs, it follows that I also had to improve my overall health to catch less viruses. This is ongoing and constantly evolving (the bugs my son brings home from preschool are tough and linger forever), and involves:

 

  • Regular use of vitamins, supplements, essential oils, enzymes, and detoxifications programs

  • Limiting alcoholic drinks to a couple per week (down from a couple per day)

  • No smoking

  • Resting when I need it

  • Moving away from processed foods, focusing on adding fresh fruits and vegetables into a more plant-based diet

  • Exercises to strengthen my neck muscles

  • Increasing my step count every few weeks

Reducing triggers isn’t managing symptoms. It’s a constant effort to prevent them without making the Chiari the star of the show. For me, it’s actually removing Chiari from the scene entirely. These changes didn’t happen overnight and don’t have to be expensive and add additional stress to your already overloaded life.

Start small. Start where you are with something that will make the biggest difference.

But reducing triggers isn’t enough. You’ll keep feeling bad as long as you keep feeling bad about feeling so damn bad.

If you want to stop being a sick person you have to stop living like one. What I mean is something I like to call UNTETHERING.