As most people with ME/CFS quickly learn, listening to your body is probably the most important thing you can do to improve your quality of life and prevent constant, unpredictable crashes. Unfortunately, it is also the hardest thing to do. Even after over 11 years with this illness, I am constantly relearning this important lesson.
I am alone this week - my kids are spending the week in Rhode Island, sailing with their grandparents and cousins - so the level of noise and chaos around me have quieted down enough that I can actually hear my body again! I had a really bad week last week. My husband was traveling, so I was on my own to get unpacked from our camping trip and get the kids ready for their trip. Now, they are 15 and 18, so they did their own packing and even loaded the car. But with them around, I still had plenty to do, plus two extra trips to the doctor for my son's ear infection, two trips to PT for his knee, many trips to the drugstore, and an exhausting trip to his school to turn in his sports physical forms (the main office is a long walk down the hall and up two flights of stairs, plus the front entrance was closed for construction!). Anyway, I won't bore you with all the details (really, there's more), but the bottom line is that I went way past my limits last week.
When I finally got back home on Saturday after dropping them off (a 4 1/2 hour return trip on my own, stuck in traffic), I was a mess. I completely collapsed and spent the next few days lying on the couch. It was such a huge relief to have no one to take care of but myself! I realized this weekend that I expend an enormous amount of energy simply taking care of food for our family - planning meals, going to the grocery store, cooking, cleaning up afterward (my husband helps with dinner clean-up). Realisticially, that probably takes up a large portion of the limited stamina I have available each day. It's important to me, though, to have healthy, tasty meals for my family, and I actually enjoy cooking, so I'm not sure that can change much.
I am determined, though, during this week alone, to listen to my body and stay within my limits. It's still incredibly difficult, after all these years. While I am attuned to the symptoms that are big signs of danger for me (sore throat, flu-like aches, exhaustion), there is a much louder voice in my head saying, "But you have to do XYZ..." And normally, there is an even more persistent, real voice next to me saying, "Mom, can you take me to...(fill in the blank)." I have learned some lessons over the past 11 years. I usually know when it needs to be a Plan B day . But I still tend to go past my limits almost every day.
The interesting thing is that my limits have greatly expanded from when I first got sick, but as I am able to do more, I still keep doing more than I should! Of course, in that first year, before I was diagnosed, I didn't know about post-exertional malaise or exercise intolerance, so I had no idea why I would feel fine one day and horrible the next. Back in those days, my crashes were severe, leaving me useless on the couch and often lasting for weeks. With treatment ( correcting sleep dysfunction , beta blockers for OI , low-dose naltrexone , and Imunovir mainly), I have many more good days now, my crashes are mild and only last a day or two, and I am able to do much, much more than before.
All that is good, but the more I can do, the more I push past those limits and try to do more! I guess it is human nature (and certainly it is my nature!). I guess it's just never enough! I suppose even perfectly healthy people try to do more than they should. But I know it's been bad lately, and I need to refocus on staying within my energy envelope, as they say.
I think that is one of the toughest things about living with CFS: having to constantly, always be aware of your symptoms, your limits, your activity level, etc. It's mentally tiring to keep tabs on it all. In fact, in the first years of my illness, my mother worried constantly that I was "too focused on my illness." She thought I'd feel better if I could just get my mind off it. I suppose she probably still thinks that to some extent, even though she understands CFS so much better now. A normal, healthy person really can't understand what it's like to have to be so ever-vigilant.
Ah, well. Lots of musings and not many solutions in this post, huh? Do you have any tips on staying within your limits? I could sure use some!