Worst Case Scenario: a Cold

*This article was inspired by Balancing Life When You Are Ill by Michaela Hollywood*

As of writing this, I was sick this past Thursday and then finally felt better today, Sunday of the same week. I wanted to share some lessons that I've learned and what really helps we cope with being sick with spinal muscular atrophy.

Getting sick is scary

I want to start off by saying that being sick is one of the most triggering and scary things for me. The day I got sick, I had a sore throat and spiraled because I was afraid that I couldn't call out to get my parents up. Normally, I call them using Alexa, a piece of technology that I truly cannot live without. It's such a life-saver! (Literally, I just found out that you can call for emergency services if needed by saying, "Alexa, call for help!" Definitely get one if you can!)

Losing my voice and cannot call for help

Anyway, if I don't have my voice, what do I do? I slept with my phone on my stomach in case I needed it that night, although I usually sleep with it by my pillow.

Although admittedly, I still slept terribly because I felt disgusting from the cold, but I was grateful that I had my phone and having it there calmed me down. Thankfully, I didn't need it, but it really comforted me knowing that it was there.

Becoming conjested

Throughout this, I wasn't congested until maybe yesterday (Saturday) which I'm thankful for. So, sometimes I get terrible morning congestion and thankfully have found the perfect routine! (I got allergy tested and they said that I didn't have anything, but that I could have seasonal allergies. I know for sure that I have something because the change in seasons and pollen is brutal for me.)

  1. First, coughalator and suction (I genuinely often think how people like me lived without these, or did they? Either way, I'm extremely grateful for them and my equipment overall. Sometimes it can all be a lot to handle, but I'm so grateful that I have tools to help myself and that includes my equipment and my incredible mama!)
  2. Second, make sure to take breaks in between, you just did a great workout, cool down! Also wait if some junk is still there and you're sure that you can get it, you just have to wait a bit!
  3. Third, if absolutely necessary, BiPap to support you.
  4. Finally, if absolutely necessary take Robitussin/Mucinex! That always helps me! The hardest part is waiting for it to kick in, so Mom and I watch something funny while we wait!

Being a patient patient

Moral of the story, the waiting is the hardest and scariest part for me. Sometimes I can't help but spiral. This week I remembered to take it a minute at a time and again, putting on something funny really helps me to get out of my head. An anxiety tip that I learned online that really helps is to count all the colors in the room. It brings me back into the room and reminds that I'm here right now.

Know your body

Another thing that I'm reminded of this week, trust yourself and your body! My mom has always said how great it is that I'm so in tune with myself and know what I need. I absolutely agree and am so thankful for this. I'm not sure how that started honestly, but I know my body like the back of my hand, truly. I know the minute that I need to see a doctor, take meds, do coughalator, and making the hard choice of knowing when it's time to go to the ER.

Treatment gives be the ability to bounce back faster

Another part of this is how much my body has changed for the better since getting Evrysdi. I'm truly so thankful for it every day. I can't remember if I talked about before on here, but when I didn't have it, before it was approved, my body was in such a scary place. I've never felt that way before. It's hard to describe the feeling, I guess I just felt out of body and immensely weaker, the progress was terrible. Ever since getting Evrysdi, I bounce back way quicker from being sick and I feel way better. Along with my feeding, I feel that I've gained muscle and look healthier because of these two things.

Grateful for my caregiver and more

Finally, I just wanted to say that I really appreciate my mom, my equipment, my home, my doctors, all of it. It's so scary to see the bright side to things like this, so having things like these in my life really helps! Also an affirmation I love when sick is that it's making me stronger, because it's true! It's giving me a workout and helping my lungs get back to normal!

I'm not normally an optimistic person, but I'm trying to get better at this, but also letting myself have the moments when necessary. I also am getting better at giving myself love and grace, and above all, time. Time to be present and time to plan and when to know when which is needed when. Being sick is so scary and hard, I hope this article helped you and I hope that you have great things and people in your life to help when the chaos of SMA comes through.

Sending you so much love, Kellie

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