a person in an electric blanket watching movies to managing energy with spinal muscular atrophy

Managing Energy

I often struggle with low energy, year-round, but especially in the winter. I'd like to share some things that have helped me and hopefully will help you. I get low energy sometimes due to chronic pain, too, so I've added tips for that as well!

Rest days are important

My number one tip: Know that rest days are okay to have! I used to struggle with pleasing and doing what everyone wanted, and in turn, my mental and physical health suffered greatly. This year, I have made myself have more days off and making them and my body a priority!

Things that I like to do on my days off for self-care are:

  • Getting up slowly
  • If I have the energy, playing cozy games
  • Watching a movie or tv show that's on my watch list

Although this stuff is super simple, it really helps me to really relax.

Saying NO!

My second tip: Saying no to doing more when I'm tired! I sometimes struggle with this with family members that I'm not with every day. My grandma (my mom's mom) wants to keep running around everywhere and I just can't.

I have let go of the guilt that I used to feel and turn it into empowerment. I can only do what I can and it's great that I know my limits! You have to make yourself a priority, you deserve to help yourself!

Chronic Pain means rest in needed

My last tip is take care of pain! I sometimes struggle with managing my chronic pain - it can be so frustrating! Here are some of my must-haves for your rest/self-care days and chronic pain days:

  • Heating pad! This has helped me so much! I'm often achy and so this helps my muscles relax. I also found a heated neck wrap that fits my neck as I often get neck pain (I sleep with it, it really helps). I got mine at a gift shop, but definitely look locally!
  • Muscle relaxation balms and lotions. Through the community I have found that Tiger Balm has really helped me, but I sometimes use a muscle relaxation balm for sleep too!
  • Physical Therapy. I also recommend PT if it helps you as well. It sometimes helps me just to stretch and loosen up!

Everything can wait until after you rest

I want to reiterate that rest is so important and everything else can truly wait. I wish that I knew this when I was younger and took care of my body better then. Before I was able to take Evrysdi, my body was slowly declining, and it was super scary, as I never felt that way before.

Now with Evrysdi, I still make these rest day a priority because although I'm thankfully better, I want to make sure with the medicine. Plus, I take care of my body as much as possible for the past me - who didn't have a choice, who was a people pleaser, who put herself last. I take care of myself for her, may she never have to feel that scary feeling and weakness again.

Any recommendations that you would like to share with the community? Let me know and leave them in the comments!

Please take care of yourselves friends, you're so important and loved. Happy SMA pride/awareness month friends, here's to a great August!

Featured Forum

View all responses caret icon

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The SpinalMuscularAtrophy.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.