With ME/CFS, I’m constantly trying to go about my life without exerting myself beyond what my body can recover from. Acceptance and figuring out how to pace myself has led to fewer crashes and improved my quality of life. I also have dysautonomia, a common comorbidity of ME/CFS, which makes it hard for me to stand for any period. Through trial and error, I’m figuring out how to stay within my energy limits. Here are some things that have helped me:
Using a wheelchair
My fatigue has gotten less severe since I started using a wheelchair because I’m not constantly overexerting myself by doing everyday tasks. I could do a whole other post on this, but my power chair has changed my life!! Something like walking two blocks would leave me dizzy, exhausted, and barely able to function for the next week or two. My chair lets me say “yes” to so many more things.
Using a shower chair
Standing in a hot shower and putting your arms around your head can make someone with ME/CFS or POTS feel terrible. I was too embarrassed to get a shower chair for over a year, but now that I’ve gotten one, I haven’t looked back!
Wearing a heart rate watch
I know other CFSers who use heart rate pacing to stay below their body’s anaerobic threshold and prevent post-exertional malaise. While I don’t do this strictly, I wear a watch and check on it, especially when I’m standing up or not feeling well. If my HR is high, I will sit or lie down and allow it to come back down before I continue doing what I’m doing ( Although I will admit, sometimes I’m too stubborn and ignore it!). By keeping my HR from getting excessively high, my body doesn’t have to work as hard and it doesn’t take as long for me to recover.
Reducing sensory input
This past summer, I realized that being outside in the sun increases my fatigue because of my light sensitivity. Sunglasses help reduce sensory input, which lessens sensory overload. This makes me less symptomatic on bright sunny days or in classrooms with harsh lighting.
Having a stool in the kitchen
I usually sit on a tall stool when I’m doing stationary tasks like washing dishes or cutting vegetables.
Showering at night
My POTS symptoms are often a lot worse in the morning. If I shower later in the day, my heart doesn’t end up working as hard + I can go to bed and rest after. I also find that doing my most physically demanding tasks before bed takes less out of me.
Investing in a lightweight vacuum cleaner
This first time I used the communal vacuum in my building, I could barely lift it and got so exhausted and dizzy trying to vacuum my dorm. I bought this 2.6- pound vacuum cleaner on amazon.ca for 36 CAD, and it has made cleaning infinitely easier!
When I was living on my own last year I used online grocery delivery services. Taking the bus to the store, shopping, taking the bus home, and unloading my groceries was way too much for me, so this was a lifesaver! I also have the amazon prime free trial since I’m a student and that’s been a lifesaver for picking up things that would otherwise require a trip to the mall.
I hope this post was useful for someone somewhere!