Keeping the pace

Dealing with chronic illness is endless. We deal with medications to treat our illnesses, and medications to counter act the side effects. We go to doctor’s appointments when we would much rather be doing something else. Our illnesses flare up when we want to go on vacation. The only constant in dealing with chronic illness is how unpredictable it is. When I first got sick, I wanted to get better. My only reference point for illness was the flu, where sickness lasts for a few days, weeks at the most, and then life goes back to normal. It took me a while to understand normal evaporated without my consent. I expected to get better, and then got upset when I didn’t. I don’t get upset over progression any more, though. I have learned to expect the unexpected.

I don’t live in bitter resignation, gritting my teeth every day. I also don’t live in false optimism, looking for the silver lining. In that space between bitter and overly optimistic, is a quiet acceptance. I’ve learned that I cannot outrun chronic illness. Rage doesn’t make it go away. Neither does looking for the good in a bad situation. Like it or not, chronic illness is my running partner. What helps me most is regulating my pace.

Five things help me deal with this every day:

1. Make friends with the word No
My parents were active with several social service organizations. When I was growing up, I watched them say yes to every request. Will you write for our newsletter? Will you organize this event? Will you host this seminar? They always said yes. When my mom retired from her job, her social service workload quadrupled. People started saying, since you’re not working, will you be able to… I saw she was unhappy, so I told my mom she could always say no. She looked at me like I had green beans growing out of my ears. The idea of saying no never occurred to her. Perhaps because I watched my mom getting overloaded with requests, I learned the value of no. The word no is my friend. Saying no allows me to focus my limited energy on things that really matter to me.

2. Know your limits
Chronic illness can limit our physical abilities. A five hour hike in the woods might be beyond your abilities. It’s valuable to know this about yourself. Friends and family who remember who you were before chronic illness can try and push you, but you know yourself. The people who love you don’t want you to end up in the hospital because you pushed too hard.

3. Gently test your limits
I know this sounds like a contradiction, but many chronic illnesses flare up and die down. When in an active phase, walking from the living room to the kitchen may be exhausting. It is easy to become afraid of moving when you are physically wiped out and all you did today was take a shower. I have been there. I would still be there if I didn’t learn I could stretch my limits. My rule for limit testing is after three good days in a row, I can try doing something new.

4. Forgive yourself for weak days
Some days are weak days. Chronic illness can make it hard to get out of bed. Sometimes it is hard physically. Other days it is hard emotionally. When you are having a weak day, you have permission to acknowledge it. You have permission to rest.

5. Work to redefine what is normal
What is normal for me now is struggling to maintain my balance, muscle aches, poking myself with needles, taking lots of medication and resting frequently. It took time to make this feel normal. Since my illness is progressive, I have to keep redefining normal as my abilities change. Making room in my life for chronic illness helps me pace myself for the long haul. Life as I knew it ended when I got sick. Life as I have it now is still worth living.