Real Life Stories from a Disabled Mom: Chronic Pain - Reeve Foundation

The words send visions of couch surfing, wrapped in a blanket while bonding with a heat source, hot beverage and various carbs (is it just me?). I’ve had chronic pain longer than I haven’t and may have spent a good chunk of a school year watching Tommy Oliver become the Green Ranger.

My main disability is cerebral palsy with fibromyalgia joining the party sometime between middle school and high school. As I’ve matured, various itises and other complex notes have flavored my crip casserole. Pain is intermittent, constant or somewhere in between, stems from stiffness, deep body aches, neuralgia, the quixotic needlestick pain of fibromyalgia. But I’m not writing this to list my ailments – I’m not that girl. (But if I wanted to be, it would be ok.) As a parent, spouse, and caregiver, I’m showing up no matter what. So, I need to have mechanisms in place that enable me to show up, limit the wear and tear on my body and movement if need be while maintaining my energy and the safety of my kids.

I have a plan for every flavor of the day I awaken to. But here are the basic formulas for success. As an ambulatory wheelie fabulous mom in a semi-accessible house, I learned from my first baby that going hither and yon across my house for every infant-related item and activity left me burnt out, exhausted, and mildly demoralized. There are weeks, if not more, that I’m pretty sure I wore the same dress.

With number two, I took my knowledge and applied it. All parents are working parents, but I am a freelancer, so I didn’t have maternity leave as such. I set up a mission control in the nucleus of the house, aka the kitchen. On a long rectangular table, I lined up a laptop, a bouncy seat, and a changing pad. Surrounding the table were four kitchen chairs, a bassinet/mini crib, and later a highchair. My diaper bag rested on a chair with all diapering and clothing changing needs along with a host of bags to dispatch the stinkiest diaper warfare.

On good days I could move carefully around the kitchen, stand and rock her. Breastfeeding meant not taking the medication that kept me mobile. Most days my walker was my mobility insurance. Those days I spent most of my days seated at the table. Mission control’s set up meant I never move more than a foot to transfer the baby from her landing spots. This meant the baby was safe, nurtured and engaged while I conserved energy and limited wear and tear on my body. I also fostered a partnership with the baby through dialogue. For example, I use consistent language when I change and dress her, so she always knows what we need to accomplish. This winter she has learned to climb on the table by herself. I picked diapers and clothes that are easy to get on regardless of how my body feels. I also keep picking her up to ensure that I don’t lose the ability.

As they grow, my kids get age-appropriate responsibilities. Healthy snacks and drinks are located at their level for easy access. Both of them learned to put trash and recycling in the designated spots and cups and dishes in the sink, picking out clothes, getting things and putting them away, helping with clean up but things rarely are perfect, and my girls are little, so consistency will take time, but they are empowered for independence.

Showing up takes more than mechanisms. Self-care is critical. I take the medicine that keeps me moving. Physical therapy and exercise are mission-critical, but mini-crib rest is just as important. I am a person who likes to be the one to fix and get it done. Learning not to burn the candle at both ends and in the middle is an ongoing process. Communicating my needs and feelings means everyone is on the same page. Listening and paying attention to the needs and feelings of my family and friends. Sometimes when our families and friends know we’re not feeling great, they’ll edit stuff out or nerf stuff that’s going on around them. It all comes back to communication.

By guest author Kieran O'Brien Kern