A day in the life of a #pwME

My daily routine as a person with moderate/severe ME/CFS

My day as #pwME (person with Myalgic Encephalomyelitis).

Sick since July 2020, diagnosed February 2024

(Severe July-October 2020, Moderate Nov 2021- Dec 2022, Mild most of 2023, Moderate Dec 2023-March 2024, Moderate/Severe March 2024- present)

Here is what a day in the life looks like on a good day with ME:

5am Wake up with Jack the dog. I put on my Visible app heart rate monitor, hop in my wheelchair and let him out. I can walk short distances but the front door is too risky of a distance to trust on my legs. While he’s doing his business I roll to the kitchen and I make a cup of half caff coffee, decaf if I’m feeling tachy.  

• My parents moved in with us a year and a half ago so that we could care for them- my husband and I moved into the office to give them the king-sized bed in our main bedroom. We had the plot twist early this year where I needed them to take care of me. When I became unable to climb the stairs to get to the office, hubs set up our spare room as my little nook. The dog is afraid of stairs, so he’s stuck with me. And I’m stuck taking him out at 5. I don’t mind because it gives me a definitive start to my day when I’m well enough.

530am Jack comes inside and settles in his spot on Papa’s chair with a toy, and I go to my nook and start my day. I enjoy my coffee in bed, take my meds, do my morning check ins on Visible and Welltory apps to check on my baseline for the day, and then start checking off my daily goals in the Finch app to stay on track.

• The Visible App helps me with my heart rate monitoring and pacing. ME is an energy limiting disease characterized by post exertional malaise (PEM) so the theory is if I pace myself and don’t go into overexertion (104bpm for me) I have a chance to stay free of PEM. I like this app because its meant for people with ME, long COVID and POTS- it warns me when I’m in overexertion, helps me track activities and the exertion for those activities, and gives me a daily score based on my sleep, HRV and trends. The Welltory app is made for healthy people so I never get a good score, but it uses HRV to determine energy level, stress level and overall health. I like this one for comparison to the Visible app and it reminds me that I’m already starting at a deficit even if I feel kind of okay. (not an affiliate of these apps, just a fan)

6 am The kiddos come in and out while they start their day. Sometimes, they need snuggles or help with a particularly challenging garment or toothpaste tube. I parent from my bed as best I can until they get swept off to school by Papa or their dad.

•  Finch is an app that’s like the Tamagotchi of self-care apps.  I love it because it helps me set daily goals or to do items and gives little dopamine hits with each completed task. There are quick self care exercises to grow your pet, earn rewards, and improve mental health. Here’s my link or use my friend code 9QQYN36X9V3 for a special reward if you’d like to try it! (this is not a paid ad, I just love the app <3)

715am to 1100am  I tackle my morning pages (3 pages of nonstop free writing) and meditation on the insight timer app. I lay flat to read a nonfiction book for at least 15 minutes (Current read: Whole Language: The Power of Extravagant Tenderness by Fr Greg Boyle). If I have anything left in the tank I will sit up to work on my writing (I have a HUGE project I’m tackling now that I can’t talk about yet but soon!). Somewhere in there I eat breakfast and take supplements that need to be had with food. (On a really good day or appointment day this is where an outing might happen, 1 or 2 times per month).

1100am to 1pm Nap time. At this point I’m usually hurting from sitting up and drowsy from using my brain. I sleep until I wake up, usually about 2 hours.

1pm Lunch time. Papa brings me something from town or I have a heavy snack from my stash in my little fridge or bedside drawer.

1pm-3pm My afternoon is spent on zoom recovery meetings and catching up with my sister and friends via text or on the Marco Polo app (we use the AEIOU check in from The 3 Things!). I’ll also use this time to catch up on social media or my writing.

3 or 4 to 5pm Time to lay down again. Sometimes I sleep, sometimes I just lie there, sometimes I read. The kids get home and I try to be present from bed. I sign papers or help with homework. After homework, they get two hours of screen time. They come in to show me their videos or the current Roblox game they’re into or just to talk talk talk <3.

6pm I usually have supper in bed after a full day, as I’ve described. The chaos of 7 humans and 3 dogs is too much sensory input and my nervous system goes haywire (sweating, increased heart rate, vertigo etc). If I’m doing really well and below my visible points for the day I will eat at the table with everyone.

630-830pm After supper I crochet in bed and watch crap TV (I just finished binging Evil and Wednesday) or I listen to a podcast (My Favorite Murder usually) or a book (current listen Jesus and John Wayne:How White Evangelicals Corrupted a Faith and Fractured a Nation by Kristen Kobes du Mez)

9pm Before sleep I review my day to see what went well and what didn’t. I take my meds. I look over my Finch app to see if I missed anything that can’t wait. Then I read fiction until I think I’ll be able to sleep (current reads: The Hollow Places by T. Kingfisher on kindle and Midnight in the Garden of Good and Evil in paperback.)

If my joints are hurting I can’t hold a physical book. I have a handle on my kindle that allows for ease in reading without the exertion of holding it. I also like to have a couple of different options for fiction in case the content gets too intense for my energy level (things like the betrayal trope really stresses me out).

Here was what a day looks like on a bad day with ME.

The dog wakes up between 5 and 6 but I can’t get up to take him out. Once he realizes I can’t budge he either resigns to another hour of sleep or goes to knock on papa’s door to make him get up.

I lay there while the kids come and go.

I may open my Finch app and try to manage the most important self-care tasks (e.g., medication, brushing teeth).

Very little reading, no writing.

Sleep on and off all day. Nausea. Headache. Fevers. Vertigo.

Kids come home. I lay there while they come and go. If the light is off, they know to back out quietly so as not to wake the beast.

Try to eat when one of my caregivers urges me to.

Take meds.

Try to sleep. Pray for a better day tomorrow.

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