This Prescription Includes Everything I Need for a Bad Day

In the years since I was diagnosed with NMO, I have had good days, and then bad days when I couldn’t even get out of bed.

One summer, I spent 16 weeks in bed, likely due to major side effects from one of the NMO drugs I was taking. As a result, I’ve developed many ways to cope, which I thought I’d share with readers in the hope that you’ll find them helpful when dealing with your own bad days.

My biggest coping mechanism when I’m sick in bed is my tablet. It’s my main connection to the outside world via the internet. I use it to watch movies or television shows. I do this so much that I haven’t turned on my actual television in an entire year! 

Documentaries are my favorite genre. My go-to list of those I can watch over and over again includes:

• “Mile… Mile & a Half”: A group of artists and filmmakers hike the John Muir Trail in California.
• “Halo Effect: Kayaking Unexplored Rapids”: The film follows daredevil kayakers in Iceland and Norway.
• “The Barkley Marathons: The Race That Eats Its Young”: This is truly the most ridiculous marathon in the world.
• “Finding Vivian Maier”: A mysterious photographer’s work is discovered after her death.

I am a voracious reader and like to borrow e-books from my local library, using one of two apps to access their catalogues. I can also borrow audiobooks, as well as movies and TV shows. The beauty of borrowing electronically is that there are no late fees, and their selection is pretty amazing.

I also enjoy listening to podcasts. Some of my favorites are:

• “Clear + Vivid with Alan Alda”: This beloved actor always has such interesting guests.
• “The Rest of Everest“: If you’re a fan of mountaineering like I am, you’ll find this fascinating.
• “Dark Poutine“: This is a Canadian crime series co-hosted by a friend’s husband.

Another way I keep myself entertained while in bed is with my portable gaming console. I bought it last year when isolating at home started to feel long and boring, and my friends were raving about it. It turns out they were onto something! My favorite games include:

• Animal Crossing: Create your own island world and invite various animal characters to come live there.
• Tetris: An oldie but goodie!
• Red Lantern: This is a story-driven survival game with sled dogs.

My friends and I have a private Facebook group where we talk about the games and arrange times to play together. It really is the best fun and a great distraction.

On the more practical side, I keep a number of important things on my bedside table so that if I wake up feeling terrible, I have easy access to the items I need most. These include:

• A small desktop fridge that’s just big enough to hold a couple bottles of water, some juice boxes, and small snacks. This allows me to stay hydrated and fed when I’m unable to get up.
• A small thermos with a built-in straw that I can fill to keep a cold drink on hand overnight. 
• All of my pills, which are sorted into daily pill containers. 
• My thermometer, in case I get a fever in the middle of the night.
• My cellphone, in case of emergency.

Although I may be stuck in bed, I can’t stay in my pajamas all the time, as much as I may want to. My medications and groceries are delivered, and I have a nurse who comes to my home every two weeks to give me an infusion. A lab tech also comes to do my monthly blood monitoring.

For those times when I absolutely have to get dressed, leggings, a T-shirt, and my favorite cozy sweatshirt allow me to look presentable, while still feeling comfortable. I have an entire drawer full of leggings and T-shirts, which have become my de facto uniform on bad days. I often add either a pair of hand-knit slippers or warm socks for days when I’m having trouble regulating my body temperature and feel cold.

Since I’m often forced to stay in bed, I’ve gone to great lengths to make sure my bed is as comfortable as possible. I have a hybrid mattress, which is a dream to sleep on, and I’ve also splurged on pretty bed linens and lots of pillows. Believe me, this is one thing it really pays to invest in!

Over the years, I’ve figured out these ways to cope with the bad days, and it’s made it easier to manage. I often joke that I’m ruling the world from my bed, but it’s the truth.

I know I’m not alone in this. So many of us with rare diseases and chronic illness face this reality. It always helps to hear how others deal with it. What are your secrets to coping? Do tell! Please share in the comments below.

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Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder.