Chiari - Take A Life Inventory

Something had to change. I wasn’t living. Life wasn’t even possible. And I didn’t accept that.

That’s the first step, I think. Refusing to accept that how you feel at your worst is all there is.

Because there’s more. There’s so much more.

I’m going to share what I’ve learned in since the Chiari diagnosis I received in 2016 because most days I live Chiari Free without surgery. It is my genuine hope that everyone can find what works for them—even if that includes surgery—to feel this good.

First things first:

Take a life inventory:

Take a long, hard look at how you’re living. From the moment you wake up to the time your head hits the pillow, how do you spend your day? How do you feel about how you spend your day? The idea of the inventory is to get clear about where you are at. If it helps, use these questions as prompts:

What does a typical day look like? (Routine)

Who do you see daily?

How do you feel about the way you spend your days?

What do you want to experience less of each day? More?

What triggers your symptoms? Are certain times of day worse? Better?

How do you deal with/manage your symptoms every day?

What are your stressors?

What do you do currently to alleviate stress?

How do you feel about your job? Is it fulfilling? Is it in line with your interests?

What are your interests and what kind of job would support them?

How do you feel about your coworkers? Boss? If you’re the boss, how do you feel about your own leadership style and your relationship with your employees?

What does your home life look like?

How is your relationship with your family? Spouse? Children? Parents?

What would you change?

How many hours do you sleep at night, and do you wake up feeling rested?

What are the unhealthy habits you would like to break?

What are the healthy habits you currently have?

What healthy habits would you like to have?

Do you have any passion projects? What are you doing just for you?

(Or are you so bogged down by symptoms that it’s all you can do to drag your feet from day to day? I get that too, bear with me).

Overall, how happy are you with your life?

What is one minor change you could implement to be happier in your life?

What is one minor change you could implement to be healthier in your life?

In 2016 my inventory looked something like this:

What does a typical day look like? (Routine) - Got up at 6am, worked 7-4, went home, ate supper, showered, in bed by 7ish to watch TV and drink 1-3 glasses of red wine, slept (poorly).

Who do you see daily? - My husband, coworkers

How do you feel about the way you spend your days? - There is a lot of tension in my marriage because my husband wants to have kids and I don’t know if I’ll ever be able to because I feel so fucking terrible. My job is so stressful. I hate it. I have no energy by the time I come home, and I usually don’t give a fuck about anything. It all feels fucking terrible and useless.

What do you want to experience less of each day? More? - Less: stress, anger, PAIN, fear. More: Joy. Love. Peace. PAINLESSNESS. Anything other than how I feel right now.

What triggers your symptoms? Are certain times of day worse? Better? - Cold viruses trigger symptoms, poor air quality, stress, breathing, the building where I work. Strong smells/chemicals. Mornings are the worst. I wake up feeling like shit every day.

How do you deal with/manage your symptoms every day? - I used to take a ton of prescriptions asthma medications that made things worse. I take tons of cold meds now. They don’t help as much as I’d like. I always have water with me to stop a coughing fit. I drink red wine every night because it helps the cough and helps me sleep. Mostly I just grit my teeth and bear it.

What are your stressors? - WORK. Keeping up the house when I feel so fucking depressed all the time. My husband because I can’t be a decent partner and I know he deserves better. Our families because they always ask us to do things but they don’t understand how fucking hard it is for me and then they get upset when we aren’t around and I don’t know how to make them understand that it isn’t THEM. It’s ME.

What do you do currently to alleviate stress? - Drink wine every night. Watch TV and just check out. Take baths. Reiki sessions.

How do you feel about your job? Is it fulfilling? Is it in line with your interests? - I HATE my job. Hate it. The people are nice, but the job is so stressful. I am good at it so I end up getting the harder/bigger projects than a lot of my coworkers, but I get paid less than some of the ones that just started that I had to train myself. I feel totally overlooked and overburdened. It’s not fulfilling at all. Even though I work hard and would like to earn more, this is still the best paying job I’ve ever had and that makes it hard to quit.

What are your interests and what kind of job would support them? - I am a writer…that doesn’t write anymore. So…writing. I’m also getting interested in more natural health/healing.

How do you feel about your coworkers? Boss? If you’re the boss, how do you feel about your own leadership style and your relationship with your employees? - My coworkers and are mostly good and my leaders are great. They help make this job bearable.

What does your home life look like? - It’s dark and sad and I feel like my husband is going to leave me because it’s so depressing to be with someone who is sick and in pain all the time. I basically want to lay in bed all the time and I wish everyone would leave me alone. My husband included.

How is your relationship with your family? Spouse? Children? Parents? - It’s all strained. My dad died in 2015 and I’m still trying to grapple with that. The rest of that side of my family is flailing, trying to figure out how we go on without Dad. My husband’s family is very involved—much more than I’m used to or that I want. They all expect so much from us. Maybe I would be better off alone. I could spare them all the misery that is me.

What would you change? - EVERY-FUCKING-THING

How many hours do you sleep at night, and do you wake up feeling rested? - I sleep as long as I can. I still wake up feeling hungover and shitty every day. I probably drink too much wine.

What are the unhealthy habits you would like to break? - I would like not to want to or have to drink wine every night to feel better. I’d like not to want to eat the greasy breakfast sandwiches at work every morning. I’d like not to want to fill my tray at lunch or go through so many drive thrus.

What are the healthy habits you currently have? - Well, I mean, I breathe every day, but I’m not very good at that.

What healthy habits would you like to have? - I’d like to drink less caffeine, eat less processed food, eat MORE healthy food, go for walks/exercise, have the ENERGY to go for walks/exercise.

Do you have any passion projects? What are you doing just for you? - I used to write. Now I do nothing. I’m barely scraping through the day as it is.

Overall, how happy are you with your life? - I’m not. There is nothing good here.

What is one minor change you could implement to be happier in your life? - I could try to start writing again.

What is one minor change you could implement to be healthier in your life? - I could try to drink more water.

OK, OUCH…digging into my memory banks for those answers is actually kind of painful. Sometimes I forget how bad I felt every single day.

The inventory might seem tedious but we have to know where we are so we can decide where want to go and change course. I needed to rewrite the story of my entire life to heal. For me—and I don’t think I’m alone—the Chiari has been as much a mental and emotional journey as a physical one.

Healing starts from where we are.

So where are you, and what parts of your life have been overrun by the Chiari? Start there. Then, begin REDUCING TRIGGERS.