How I Protect My Physical and Mental Health with SMA

Living with spinal muscular atrophy (SMA) causes a toll on your mental and physical health on a daily basis. You learn to live with the anxiety, pain, and discomfort that comes with a body you inherited that doesn’t function normally. While most days you learn how to cope and make the most of it, other days seem a bit darker and harder to navigate. I like to think SMA keeps me creative in adapting to the world around me. Below are some ways I’ve tried to improve my mental and physical health in my daily life.

Tracking and fueling my physical health

When it comes to my physical health, I choose to focus on nutrition, caregiving management, and respecting my body’s boundaries. My nutrition requires me to be aware of my calories and protein intake. I think a lower calorie intake and high protein percentage fuel my body best. I like to use MyFitnessPal to track my macros, breaking my nutrition into carbs, fat, and protein. I enjoy adding Premier protein shakes to hit my protein goals. I also use my Oura ring to track stress levels and my sleep quality. My energy levels can be pretty low if my stress and sleep scores are not well.

Pacing and giving myself grace

While I’m not currently managing paid caregivers where a schedule needs to be set, as my fiancé has taken on that role, I still have to convey my needs and wants and decide whether my body has the energy to complete daily tasks. When I did have caregivers, it was important to find reliable people and have good communication and scheduling skills in order to get through the day. Specific things that have helped in my daily life are showering earlier in the day if my schedule allows, as that is when I have the most energy. I try to split household tasks up throughout the week to not get so fatigued. If I have a busy day out, I try to plan a day for my body to rest after.

I’ve also learned to be more adaptable over the years and to give myself grace if I don’t get everything I wanted to get done in a day accomplished. If my body is too tired to shower that day, I wait until the next. If I don’t have the energy to cook, I DoorDash. If I need more rest, I may reschedule or cancel plans. I believe listening to your body is very important and not pushing through things is sometimes the best option.

Tending to my mental health

Mental health, for me, is a little bit more tricky. Right now, I’m focusing on trying to lower my stress and anxiety levels. Managing a chronic disease and a body that requires a lot of help can be challenging and frustrating. Some daily habits I have implemented help me a lot. I try to get outside to reset in nature as often as possible. Spring and summer make that a lot easier. I keep in touch with family and friends to talk through some of the challenges. I do my best to prioritize getting out of the house for a change of scenery. If I don’t do that, I can tell my spirit dips a bit. 

I also try to give myself time to do some things I enjoy. I listen to music throughout the day. I also really enjoy listening to podcasts where I can learn new things or where I get to feel like I’m part of a group without ever leaving my house. I like to read. I enjoy watching my TV shows and a movie every once in awhile. Remembering to actually enjoy life and experience it, even with the challenges and annoyances that SMA may bring, is the key to a happy life for me.

My daughter and pets also keep me busy and allow me to help others and not just be the person who needs to have the help. Being responsible for them keeps me motivated and going, even when I may not want to. Having a supportive fiancé who is willing to pick up the slack and always make my day a bit brighter and easier doesn’t hurt either. They bring me more joy than they will ever know.

I hope some of my tricks and tips help you or someone you know manage their mental and physical health while living with SMA. Give yourself grace and don’t forget to enjoy all that life has to offer. You’ve got this.