Sunday, March 13, 2016

Being Sick - Part 1

Friends, this post has waited a long, long time to be written, partly because I can't find a way to casual it down or lighten it up. I want jokes to break the tension and a hopeful resolution to cap it off. I also worried that if most of you aren't struggling physically, it wouldn't serve you. I mean, what well person wants to hear about someone's sickness? I glaze over at the first medical word. Still.

But up-beat posts about capsule wardrobes and bathroom remodels sound tinny when the spaces between are silent. I want this blog to be an oasis from the "how does she do it?" madness so, though I can hardly find words for what I've been living, for you, I will try. 

No one seems to know why I sleep so much or tire so easily except I have huge amounts of cortisol and adrenaline pumping through my body. Even all night, I dream crazy dreams that leave me feeling exhausted when I wake. I've seen internal medicine doctors, more wholistic doctors, naturopaths, and everyone tells me new things to try, either adding something to my life or cutting something out. At first I tried a lot of it. I've always been able to do what I needed to, getting myself over that hump of not-feeling-like-it because I kept the reward clear in my mind. I had hope. I knew it would be worth it.

But the things I tried made it worse. Not the fatigue necessarily (that remained a constant) but my emotional wellness was being eroded. The elevated cortisol was evidence my body was already in stress response (fight or flight) and changing so much about my life stressed me further. Since no one gave me conclusive answers, and sometimes conflicting ones, I felt the burden of figuring it out with my expertise (none) and my fuzzy brain. Monthly my hormones deserted me (PMS) and I would fall off the hopeful wagon every time. I felt stranded and dazed, with no way to sort my thoughts. I would try to talk it out with people who cared and I'd eventually just stop and shake my head because I wasn't getting anywhere. There were too many unknowns. The negativity got so heavy, I'd put meals off, feeling like no food was good enough because I'd been warned off everything. I'd been advised to eat every two hours to keep my blood sugar stable, but when I'd reach for what I always believed were go-to, healthy snacks I'd hear these voices in my head: 

Your digestive process is weak so you need to eat cooked things.

If you have to eat a banana, eat a green one because it won't have as much glucose.

No gluten, no yeast, no eggs, no soy, no almonds, no cashews because they leak right out of your gut. 

So I would postpone the guilt-ridden decision, not eating for hours which felt awful too. And the anger grew. I felt trapped by the rules and fantasized about memory zapping so I could forget all the things I'd ever learned about what my body supposedly needed. If I made a decision to indulge in a comfort food, I felt guilty for the price I thought my body would pay. If I chose not to, I wondered if what I was eating was actually okay (according to half the opinions I'd found). Not knowing caused guilt to! Why can't you figure this out already? PMS is when my inner voice becomes an impatient meany.  

A few days later, with hormonal sanity restored, I'd resurface and dig deeper and try again. I took supplements four times a day and had my phone alarm on to remind me because I couldn't remember all of them. Every time I had to refill my pill boxes I wished I could puke the responsibility out of my life because it was so complex. I color-coded my ever-changing list of supplements based on the time of day I took them. Once they were all portioned out, all I had to do was be sure I had them with me wherever I happened to be when I needed to take them. Oh, and some food to go with them. Some of them. 

Then I went to work one day, feeling hopeless. I started crying convulsively and had to go home. The whole day, I cried like I was vomiting all my frustration and confusion. I decided to swear off most of my new advice, because I finally realized it was overwhelming me, not helping me. But remember how I'd always been able to push past a lack of motivation and make the good choices for myself? Now, that was broken. 

I realized it in my counselor's office when I told her I was anxious one evening because I was so cold in my house. I worried I'd have trouble falling asleep when it was time to go to bed. She gently asked, "Why didn't you go get a blanket or warmer clothes?" and I felt like a simpleton. Seriously. Why hadn't I been able to solve such a simple problem? Then I teared up because I knew my "I can fix this" had broke. I didn't believe I could make things better for myself because I'd tried so very hard, and it had only gotten worse. I wasn't even coming up with solutions anymore.

This was a great discovery because I could start to separate my health frustration from every other area of my life. My health despair had bled out and colored everything about my life, and while everything is affected by my health struggle, everything has not been taken out by it. I can still paint a room as well as the next person, I can still figure out parenting techniques that fit our family, I can still do a lot...just not very often. I discovered another truth in that session. I admitted I believed I was doing a solid job being a parent and wife and even at my job, but beyond that, I didn't have anything left. My counselor reminded me that was enough and I said, "I'm deeply grateful and proud I can still do those things." Then I looked out the window and tears blurred everything. "I just miss all the other things." 

I was talking about connecting with girlfriends, deep cleaning the places that drive me crazy if I don't get to them annually, house updates on occasion. That was when I decided to try to strategically find a place to insert my family room redo to remind myself that I'm good at some things (even if it's not self-diagnosis) and bring back some joy of seeing something get better. So I did. 

Apparently this is a really long story and will have to be continued...

I have no idea where I'm headed and no goal except to be honest about my struggle even if it's overdue. I hope you're willing to go down this road with me and be patient as I unwrap it for you.  


  1. Oh Kendra my heart aches for you. What a hard, hard time you have had. I too had a health problem that went on for 9 years. I understand the quiet despair, the guilt, the well meaning advice that left me so confused. After 9 years of pain and struggle I finally found a doctor who listened and knew exactly what was happening with my body. I cannot say I am completely healed, but it is so much better. When I have a flare I understand what is happening. DON'T GIVE UP! You will find your answer too. You will find what works for you. Being chronically sick for a long time is really hard. You are stronger than you know.

    1. Thank you so much. It helps every time I hear that someone made it to the other side where things are better!