Managing Energy

By Kellie Cusack

2 min read

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!

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Jennifer Greer Moderator
Hey there, <inline-mention username="Kellie Cusack" user-id="6697521"/>, I really enjoyed reading this article and wholeheartedly agree with everything you’ve talked about. I too learned the hard way how much rest days are important and how sometimes saying no is the best option for us. It’s hard keeping up with someone who doesn’t have our daily struggles and I’ve found that having a good pain management regiment is key in my success! Taking naps when needed also are huge things I do to keep my body from fatiguing quickly. I’m so happy you are confident in putting your needs first these days! - Jennifer Moderator 
1. KelliLynn99 Moderator
 That's so kind of you, thank you! I, especially in the Winter months when my body fatigues hardcore, have learned the meaning of rest days because I had to. I am working on giving myself grace on those days. Like I mentioned, I think that I have unintentional internalized ableism, like I can't help but hold myself to a higher standard, but I know that it's an SMA thing and I’m working hard to change that especially because I can never be at an able bodied standard, and that's ok! But yes, I have learned to love those hard moments when I need to rest. My favorite thing is taking an hour or two or lay in bed and having my feeding in bed. It feels very peaceful. I also wanted to write this article because I know how hard we can be on ourselves - but it's so important that we take this time to ourselves. I definitely think that it's an act of self love/self care.
Jennifer Greer Moderator
<inline-mention username="KelliLynn99" user-id="4530527"/> Winter time is hard on me as well! I feel you on that one. It’s so hard to come to terms with how we have our own internalized ableism in us. It’s hard to recognize it and fix it sometimes. I know I’m always constantly trying to keep up with family and life gotten to the point you’re at where I just need to do the best I can and practice self care. You’re articles always make me feel less alone! So thank you for that! - Jennifer (Moderator)
1. KelliLynn99 Moderator
 Jennifer! I'm so happy to hear that! Writing has always been very healing for me and I think you can tell that I really love what I write. I write for current and past me but also the community. This is one of my favorite articles because I definitely often feel that we don't care of ourselves and we need to! I push aside the able bodied mentality in my head to always be going and I really love taking care of my body now especially now in the cold months. I'm so so happy that you love my articles, thank you! I do too and have so much gratitude to be able to do this as a job! Kellie - Health Leader
2. Jennifer Greer Moderator
 <inline-mention username="KelliLynn99" user-id="4530527"/> Your love for writing and what you talk about definitely shines through in your work. It’s hard to shake that mentality of “go go go” when you see everyone else continue to rush through life. Keep doing what you do, I know it will help so many of us! - Jennifer (Moderator)
KelliLynn99 Moderator
Thank you so much! Actually, this year, I'm trying to honor going slow. 🐌🤎 Year of the snail for me. -Kellie, Health Leader.

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