I was thinking the other day about whether I’ve been feeling better or not, whether my ME/CFS is worsening, staying the same or improving. At first, as I compared the feeling of “suffering” I thought, “Hey, maybe I’ve improved!” But when I compared how much I get out of the house for an outing and how small the outings are when I do get them, it seems that I am doing less than ever.
Then it occurred to me that the real thing that has changed is my ability and commitment to pacing. I think it’s made a big difference!
This is my constant companion these days. It’s a heart rate monitor and the alarm starts beeping when I have hit my anerobic threshold. This is me resting with my feet up on the couch.
As long as I stay below my anerobic threshold, I am less likely to cause myself a severe flare of viral sore throats, low grade fevers, headaches and severe exhaustion. It has something to do with cell metabolism and an inability to recover from anerobic activity.
It’s been shown by experts at the University of Pacific, that though many illness’ include a factor of fatigue, ME/CFS is the only illness in which the body can not recover from exercise and actually gets worse. They tested patients with MS, congestive heart disease, ME/CFS and others and found that all of these patients test low in a VO2 max test on day one. Then they put all of them thru the same test on day 2 and only ME/CFS patients tested even lower on day 2 than they did on day one! Other illness that involve fatigue tested at the same low level as day one.
Now, some people would like to believe that “pacing” will control ME/CFS flares. In my experience that is just not true. This illness can flare in any of it’s many symptoms, at anytime it feels like, with no rhyme or reason!! However, I can have an influence on the illness and not cause a flare by using my heart rate monitor and pacing!
Some days, just walking to the bathroom causes my alarm to go off. Other days, I can sit at my painting table or even throw some ingredients in the kitchen aid for cookies without it going off. As long as I pay attention to it, I know I won’t be causing the flare.
This is after walking 12 steps from the couch to my painting table. Some days it would flare much higher. Some days I can get there without it beeping at me.
The best thing about pacing, is that it gives me a little bit of working room to choose a few things I can do around the house on certain days. Or, it tells me when the things I’m choosing will result in feeling sicker tomorrow.
Other days, the symptom that is flaring is my POTS (Postural Orthostatic Tachycardia) and there is no way I can even stand up without the alarm going off. When this happens, I know I’m in for a flare the next couple of days. It doesn’t matter how much I try to rest, I still have to get up to go to the bathroom or get something to drink and that takes me way above my anerobic heart rate.
Unfortuneately, the other thing this kind of pacing doesn’t account for is mental exertion. Reading, writing, talking with people, loud sounds, large groups, or anything else that takes a lot of concentration are all things that can wear me down and cause a flare. This type of exertion is much harder for me to gauge and pace.
That being said, I do think having some influence on the symptoms and some getting some warning when I will have a really miserable day has helped me cope a lot. I’ve always been a person who coped better when I understand what was coming, even if it is bad, rather than dealing with the unknown.
A couple of days ago, I had a day I couldn’t even stand up without the alarm going off. I told my husband that I was going to have a bad day the next day. And sure enough, I woke up with a low grade fever and horrible flu like headache. He reminded me of what my heart was doing the day before and right away I knew why I was feeling so bad. I wasn’t able to control it or stop it, but at least I could connect it to something.
The days a symptom flares for no good reason are probably the hardest ones emotionally. Pacing has helped reduce that.