Anyone with chronic illness can tell you… Finding that balance between what you need to do, what you can do and what you should do is like finding the pot of gold at the end of the rainbow. It’s the ever out of reach, constantly shifting idea that we can never quite seem to reach.
I had my first pain flare at 10, and ever since then I have severe pain that has gotten worse as I’ve gotten older. Intermittently at first, then daily when I reached my early 20s. At 23, I was diagnosed with fibromyalgia and chronic, debilitating migraines. At my fibromyalgia diagnosis, I had three young children and a husband on active duty in the military, in a job position that kept him away from home 90 percent of the year even on non-deployment years.
I learned about my diagnosis, but thought I was tough enough to “push through.” I made small accommodations, like regulating my sleep better, and took the medication they prescribed, but never stopped long enough to really fully realize how much of an impact my illnesses were going to have on my life.
I measured myself against what I felt I should be able to do, usually based off what I used to be able to do or felt was required of me as a mom and a military spouse, as if it were a measure of my self-worth. As if the sum total of what I accomplished in a day somehow meant it had not defeated me. I accepted that I would have pain, but did not stop or allow myself to stop long enough to actually learn to really balance my illness.
I faked the hell out of it. For years. Until I couldn’t fake it anymore.
I think it is a common pitfall with chronic illness. We struggle not to be defined by it, struggle to maintain our daily lives. Struggle to maintain our relationships, to work, to live our lives as normally as possible. We are stubborn about our pain and health, and often only stop when we can’t keep going anymore. And that stubbornness is often critical to psychologically surviving chronic illness. Without that stubbornness, giving up is too easy of an option. So we cling to it. It’s what gets us out of bed in the morning, when we know before we get out of bed that today will be miserable, and if we are lucky maybe we will get 25 percent of what we need to done today.
But what I failed to recognize was that it is just as important to allow myself to stop sometimes. To stop before I could barely walk. That taking a day off isn’t me being “lazy,” it’s realizing my body’s limitations and taking care of myself. Sometimes I need to let go of that stubbornness, and take that day on the couch reading a book or napping. It’s OK, and more than that… it’s necessary. It is not selfish, and does not diminish my self-worth.
Sometimes that means canceling lunch dates with friends, sometimes it means the dishes don’t get done. And that’s OK. Friends who truly care will understand, and the dishes will be there tomorrow.
Self-care means something different to everybody, but what is not different is our need for it. This goes for everyone, not just chronic illness patients. The need for self-care often increases when we can least afford to take the time for it. And there are times when we can’t stop. And sometimes we get into such a cycle of not stopping, not taking that time, that we forget how to.
At 36 I received a lupus diagnosis, I was subsequently told that my chronic, uncontrolled pain levels are causing me to become diabetic, and are the culprit behind my tachycardia, which left to continue will become heart problems.
The combination of being told these things back to back, in a matter of about four months, left me reeling psychologically. But it also was a wake-up call, that it is unrealistic and unhealthy to keep expecting myself to function like I did when I was younger, before chronic illness.
I was told repeatedly upon my fibromyalgia diagnosis… “It’s not terminal, but it is degenerative.” What nobody told me was that if I didn’t allow myself that time to rest when I needed, and learn to balance out my symptoms, I was propelling myself towards more and more health issues. Nobody told me… Be kind to yourself.
We can only “fake it till we make it” for so long, before we break. I will continue to fight, every day… But I fight now to learn my balances better. To be better at taking care of myself, which in turn enables me to take care of my loved ones better. To not hold myself up to some imaginary standard of what I think I need to be, in order to be “useful” or “normal.” And to recognize the value of what I bring to those in my life, my family and friends, without feeling the need to constantly be pushing myself beyond what I can realistically do.
Be stubborn. Be strong. Don’t ever give up. And always do your best to listen to your body. Be kind to yourself.