My energy levels are all over the place.
Some days, I feel like I can conquer the world, and I am able to do stuff like crazy. Other days, I wonder if I want to expend the effort to roll over in bed. You know, because I’d have to get the dog to scoot over, and then lift my head up and… ugh, it’s just not worth it. (These days outnumber the energetic ones 10 to 1.)
I know on a cognitive level that this is textbook MS stuff; fatigue is present in more than 90% of multiple sclerosis patients. Web MD defines fatigue as “a daily lack of energy; unusual or excessive whole-body tiredness not relieved by sleep” and adds that MS fatigue “comes on more easily and suddenly than normal fatigue.” It does not seem to correlate with the type of MS or the number of years one has had it, the severity of nerve damage, or how severe one’s impairment is.
There is no clear-cut understanding of the causation, either. The fatigue might be related to primary disease factors; for instance, since I have damaged nerves to my left leg, the muscles don’t work well and thus tire easily. Researchers also believe this, in turn, puts more stress on the central nervous system, which could cause overall fatigue. Secondary factors related to MS can also contribute. Medications might have an effect on energy levels; the depression that is common in people with chronic disease could contribute as well.
It could be MS fatigue. It probably is. I know this.
But on a minute-by-minute basis, that’s not how it feels. It feels the same way it always has – like I’m not measuring up. Other people get their work done. Other people finish their chores. Other people take care of their homes. Other people are successful, are competent, are not total and complete losers. (I even know how exaggerated these thoughts are… but I still think them.)
I tell myself I shouldn’t be so lazy, that I should get the hell up and live my life.
I tell myself that just because four different drugs for the fatigue haven’t worked or had horrible side effects, that doesn’t mean I’ll never find one that helps.
I tell myself that all the studies say that my fatigue may improve if I eat well, get exercise, take good care of myself, schedule rest periods, reduce stress, practice mindfulness and simplify my life. (Then I laugh hysterically, because all of those things take energy, and if I had any energy, I’d be a lot more inclined to do them.)
Going down to three days a week at work has definitely helped. The main floor of my house is pretty well under control. I’m keeping up with laundry for the most part. I’ve checked some books out of the library and actually read them. I’ve been blogging a bit more. I’ve managed to see some friends. I’ve even been to the gym, though walking on a treadmill at 3 mph doesn’t seem like an amazing triumph.
It’s just worrisome when lying in bed for 18 hours seems like a more appealing option than any of these – or, at any rate, an option I think I can handle – or when it seems that it takes all my effort to live my life halfway when I want to live it to the full.
Edited to add: After writing this, I went to bed for 90 minutes… but then I got up and went to the gym and took the kids to the movies and went to the grocery store. Now I’m going to bed again, but still – I’m proud.
“Hot Water Heater” by Dylan Pankow / CC BY