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How to Balance Planning, Pacing and the Unexpected in the New Year With Illness

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The first thing you learn when you realize you have a chronic illness is the word “pacing”: ensuring that your daily, weekly and monthly activities don’t overstretch your energy reserves. It’s a seemingly simple principle, but an incredibly difficult one to carry out.

The last few years I have spent the summer carefully working out a plan for the year, taking into account my workload, my family needs, my volunteer activities and my health. I craft a schedule with spots for rest. I make sure there are down times every day. On paper, the schedule is a thing of beauty – the perfect balance of adult fulfillment, caring parenting and illness management. But the reality is a bit of a mess every year.

This year I regretfully removed the last bit of paid work from my life. I knew my daughter starting high school would be a challenge, as would continuing my son’s homeschool education. I knew my spouse’s fall travel schedule would be full. I knew fall/winter is my worst time medically. I only took on one volunteer commitment that is my passion, and whose schedule I could control. Really, there isn’t much left to cut.

But, I hadn’t accounted for all the stress. Family stress – of a new diagnosis and heavy course loads, the intricacies of social interactions and the heartbreak of lost friendships, stresses at work, a (thankfully minor) car accident and a steady, steady increase in my own symptoms aggravated by a bout of whooping cough.

And there it is. All the planning you do can’t prepare for the unplanned. How do you carry the weight of your own fears and support those of the ones you love most while feeling so unwell? Graciously, mostly. Sometimes less so as exhaustion takes over and you just can’t for another minute. But even then, you have a sleep, you have a think and you get up the next day and try again. You push through the brain fog and the pain and the exhaustion and frustration and the fear to try to carry just a little more.

Because in the end what you have is love. Love of your family, or your pets, or a cause, or your art – but a love that anchors and sustains you and sends your essence outwards into the world. And so you push. Just a little more.

The past six months have confirmed for me the truth that work doesn’t have to be paid to be valuable. That I don’t need to have a career to have an impact on the world. That keeping my schedule light and clear means that I can be present for those who need me. That saying no means keeping myself as healthy as possible so I can get through the rocky period that will, inevitably, come.

And so I’ll head into the new year with love and compassion, for myself and those around me, and pace through the days, weeks and months slowly and carefully. I’ll find joy in those times where I have energy, and I’ll try to find peace in the moments when I don’t.

But most of all, I will focus on love.

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Photo via arianarama on Getty Images

Originally published: December 29, 2017
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