Absolutely resonated with your response to the doctor’s scale. As someone who used to be a D1 runner, a day of Netflix would be a good day…
I try to limit myself to 1-2 TV episodes per day to reduce my mental fatigue. I’m off Instagram entirely this month and feeling better for it.
I can no longer walk my dog around the block or shower without PEM (need an immediate nap afterwards, a rest day the next day, or both). But I feel happy that I’m doing these things more!
I can drive around the corner to the acupuncturist, but I don’t feel ready to drive in higher traffic volume. About a month ago I drove 20 minutes on a highway in the dark (was not prepared) and I felt fatigued for about 2 weeks.
For me, it matters whether I *want* to do something and how I respond after. Because the nervous system is connected to so many processes in the body, I find that I can better recover from exertion when I’m regulated. Just harder to get in that headspace lately!
Great points! I actually refuse to use the word fatigue as I’ve come to conclusion it is incorrect for the energy deficits ME patients experience.
It infuriates me when people who know me, know I’m ill, knew me before I developed ME in 2012 after a virulent virus… dis my experience by saying they get that too. FFS. They do not stay home 90% of their lives to live within their energy envelope. They can still work, rest & play.
The invention of the term CFS was never intended to help patients and I believe should never have been changed from myalgic encephalomyelitis which very accurately describes the disease.
I use descriptions like “catastrophic failure at the cellular level to produce energy”. That gets attention and interest.
No faffing around with ridiculous words like fatigue or brain fog. I’m cognitively impaired and it’s about time we had appropriate language to describe our experiences!
I love this break down! Especially where it includes mental exertion since I find most scales focus on the physical. I find that sometimes there are key things that I use to tell even for myself what stage I'm at or about to go into. For instance, one of my tells that I am about to really crash is when I notice myself leaning on things while standing because it's taking too much energy to do it on my own or sitting to brush my teeth because that 3 minute at the sink feels exhausting. That's when it's time to pay attention. Also really resonated with "can not safely drive a car" as a marker of a particular tier or stage. Also how/if I'm able to go up and down stairs is a marker for me. Or sensations in my body like a pulling behind my eyes or sudden cold.
I share my scale as an example. Clearly yours would include markers of balance. Sage will share later this week about her whole daily logging system. She’s been able to learn SO much about what things tip her over and what treatments are helping.
Boy, do I hear you. It’s good to see that someone can describe the process so clearly. Long term chronic illness is a difficult way to live and hard to explain to others. Be well.
Marianne, thank you for sharing. I really appreciated this article. I’ve shared it with my 17-year-old with fibromyalgia and asked her to read it. It’s so important to have the right understanding
Absolutely resonated with your response to the doctor’s scale. As someone who used to be a D1 runner, a day of Netflix would be a good day…
I try to limit myself to 1-2 TV episodes per day to reduce my mental fatigue. I’m off Instagram entirely this month and feeling better for it.
I can no longer walk my dog around the block or shower without PEM (need an immediate nap afterwards, a rest day the next day, or both). But I feel happy that I’m doing these things more!
I can drive around the corner to the acupuncturist, but I don’t feel ready to drive in higher traffic volume. About a month ago I drove 20 minutes on a highway in the dark (was not prepared) and I felt fatigued for about 2 weeks.
For me, it matters whether I *want* to do something and how I respond after. Because the nervous system is connected to so many processes in the body, I find that I can better recover from exertion when I’m regulated. Just harder to get in that headspace lately!
Great points! I actually refuse to use the word fatigue as I’ve come to conclusion it is incorrect for the energy deficits ME patients experience.
It infuriates me when people who know me, know I’m ill, knew me before I developed ME in 2012 after a virulent virus… dis my experience by saying they get that too. FFS. They do not stay home 90% of their lives to live within their energy envelope. They can still work, rest & play.
The invention of the term CFS was never intended to help patients and I believe should never have been changed from myalgic encephalomyelitis which very accurately describes the disease.
I use descriptions like “catastrophic failure at the cellular level to produce energy”. That gets attention and interest.
No faffing around with ridiculous words like fatigue or brain fog. I’m cognitively impaired and it’s about time we had appropriate language to describe our experiences!
Thanks for asking.
I definitely do not have myself figured out. But be it fatigue or exhaustion playing cards on line is my lowest ebb activity too. ❤️
How does mental health or emotional health enter into your scale? Or does it enter at all?
I love this break down! Especially where it includes mental exertion since I find most scales focus on the physical. I find that sometimes there are key things that I use to tell even for myself what stage I'm at or about to go into. For instance, one of my tells that I am about to really crash is when I notice myself leaning on things while standing because it's taking too much energy to do it on my own or sitting to brush my teeth because that 3 minute at the sink feels exhausting. That's when it's time to pay attention. Also really resonated with "can not safely drive a car" as a marker of a particular tier or stage. Also how/if I'm able to go up and down stairs is a marker for me. Or sensations in my body like a pulling behind my eyes or sudden cold.
Appreciate your definitions and the scale. Thanks
That is a useful scale. The moment I have to grab things and my sense of balance is off that lasts for a good portions of the day
I share my scale as an example. Clearly yours would include markers of balance. Sage will share later this week about her whole daily logging system. She’s been able to learn SO much about what things tip her over and what treatments are helping.
Boy, do I hear you. It’s good to see that someone can describe the process so clearly. Long term chronic illness is a difficult way to live and hard to explain to others. Be well.
Jane I’m so pleased it is clear for you! I’m never sure if what makes sense in my head will make sense to others!
Marianne, thank you for sharing. I really appreciated this article. I’ve shared it with my 17-year-old with fibromyalgia and asked her to read it. It’s so important to have the right understanding
April, please share my warmest wishes with your daughter. I hope my experiences with ME/CFS are helpful as she figures out her path with fibromyalgia.
Thanks for shareing love you mariania