Zzzzzzz: Sleep & MS

I wish someone had told me in my 20s that you can’t make up for lost sleep. I would go back in time and keep a strict bedtime. I would guard my sleep with fierce determination and clear boundaries. The irony is not lost on me that we spend childhood skipping naps and wanting to grow up faster and then become adults and realize, it has distinct drawbacks. What I wouldn’t give for scheduled naps and less responsibility built into my day-to-day. Anyone else need a break from adulting?

The importance of sleep

My body worked without me having to think about it… it just did everything it was supposed to until one day it didn’t. Like breathing or a heart beat, it functioned without conscious thought and that included walking, balancing or lifting my leg. Enter MS; I discovered too late that movement is a privilege.

Over time, my sleep was increasingly disrupted for a myriad of reasons including heat intolerance, hot and cold flashes or just a general lack of body temperature regulation, muscle spasticity, stress, anxiety and depression, as well as every fun side effect from MS drugs. I was forced to learn the profound impact sleep has on the immune system, the human body and our overall health the hard way.

While experts don’t know what the specific equation is to equal multiple sclerosis, they do agree on a few factors that contribute to diagnosis: vitamin D deficiency, prolonged and acute stress and lastly, lack of sleep.

When I don’t sleep — no matter the reason — my MS symptoms flare. I have spent years of trial and error to find what I need in order to sleep, what the common triggers are for disruption and the tools that can assuage my nasty MS side effects.

Book Recommendation: Why We Sleep

Who needs a break? We all do!

Why do we celebrate pushing through and powering on? We have accepted that drinking another cup of coffee is a better solution than a break. It’s utterly bonkers. We’ve been sold a societal norm to keep going no matter the cost. Do more, go faster, work longer. Where are the societal, cultural, familial and professional cues to slow down, rest or restore?

I have a body that can no longer push through and keep going. I’m physically incapable. When I’m done… I’m done! For me, this means my legs stop working, holding my head up takes effort, my balance is completely off and my limbs make me resemble Gumby. I fought this for years because I thought I had to push through. I thought I would disappoint people in my life if I couldn’t keep the pace that others did. It took me far too long to realize the pace other people keep is insane. I’m still working on being the tortoise in a world of rabbits.

I’ve found my boundaries from a decade of chronic illness. In addition to clear boundaries, guarding my sleep, establishing a flexible schedule and routine, I’ve found a few products that have made big changes in the duration and quality of sleep I now get. I hope they help you too.

Side note: no matter the product, nothing helps when you’re on steroids so accept your fate of being mentally exhausted and physically wired.

What works for me

  • Try and keep to a sleep schedule staying within a one-hour bedtime and wake up
  • I love a good restorative yoga session before bed, even if it’s 10 minutes to calm my racing mind
  • Blackout curtains and no ambient light (I can’t even handle light from my humidifier or electronics)
  • Sleep mask (this one is my favorite because it rests above the eyes)
  • Sound machine
  • Gravity blanket because anyone with spasticity or restless leg syndrome knows that extra weight is a godsend (it also helps with anxiety so I’m told but I am sure that’s because you are sleeping better!)
  • Silk pillowcase (it may be bougie AF but I also sneeze less and my hair is less frizzy so the benefits are countless)
  • No screen time at least one hour before bed (for me this includes my kindle, I try and only read a real book or listen to my audio books before bed)
  • Massages without fail reset my stress and muscle tension and I’m guaranteed a good night’s sleep after receiving one
  • Meditation apps: Headspace, Insight Timer or Calm – are all great options and have free versions or trials. I am quite partial to guided meditations on healing or yoga nidra sessions

I can’t live without this one thing

I am dramatic by nature but if there is one thing to buy immediately, save for, write a letter to Santa about or launch a crowdsource or GoFundMe to obtain, it’s the Ooler Sleep System. I tell every person I meet that this has revolutionized my sleep.

The Ooler is a mattress pad that maintains temperature as you sleep lowering your core body temperature (even in the face of persistent night sweats) to get you into deep sleep and raises the temperature to wake you up naturally. The temperature ranges from 55-115°F and you can set a schedule and adjust on your phone. It takes a few nights to find what your time and temperature patterns are and I’ve learned as the seasons change to revaluate. You even have 30 days to see if it’s for you.

As I look to a month long stay at Cleveland Clinic, please comment if you have any advice or tools and tricks to help you sleep. I need all the help I can get!

What tips and tricks do you use to sleep?

2 responses to “Zzzzzzz: Sleep & MS”

  1. I LOVE your tips for getting a good night’s rest. Thank you for reminding me to do more restorative yoga! Reading an actual book before bedtime also works for me, as well as not eating or drinking within a couple hours before going to bed. Diffusing lavender oil is one of my favorite relaxation tips, too.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: