As anyone who has lived with ME/CFS for any length of time comes to understand, the most effective way to manage this complex, debilitating illness is also the most difficult: live within your limits. As Bruce Campbell puts it in his well-known (and worthwhile) self-help courses, we need to "live within our energy envelop."
This is easier said than done. I struggled mightily with this concept during my first years of illness because it goes against my natural tendencies. I like to be exuberant and spontaneous, openly expressing the joy and excitement I feel in my life. I was actually quite the wild party girl in my youth, a trait I inherited from my mother for whom "moderation" is a bad word! So, to not go all out and do everything I wanted to do as soon as I felt well enough in those early years was pure torture for me.
As a result, my first years with CFS were spent in a rollercoaster existence, swinging from horribly crashed to feeling almost normal again. At first, before I had a diagnosis or had even heard of CFS, I was certain I was well again each time I went into one of those good periods. The ups and downs seemed random to me - I didn't see the pattern at first (who would ever guess that exercise would make you sick?) - so I continued to swing back and forth. The good times were exhilarating, but the crashes were devastating every time and often lasted for weeks or months.
Once I learned about ME/CFS and the exercise intolerance/post-exertional crashes , I slowly - very slowly - learned that I could limit the severity and length of the bad times by reining myself in during the good days. More recently, I learned that I could use a heart rate monitor to more accurately measure when I was doing too much and was in danger of triggering a crash. So, now I live a cautious life, being careful to stay within my limits, restricting my activity at all times, and living very cautiously. And it does work - severe or long-lasting crashes are rare now and most days I am able to function fairly well, as long as I don't do too much (of course, this is not only due to activity restriction but also to piles and piles of medication). I don't like living so cautiously, but it sure beats spending whole months lying on the couch, too sick to do anything at all.
And now I am watching my son go through this same learning process. He has had CFS since he was 10 years old, so this is nothing new to him, but until his battle with Lyme and other tick infections began a few years ago, Florinef allowed him to do almost anything he wanted. Besides, I have been guiding him and helping him to limit his activities all these years. He turned 18 last week and is headed off to college tomorrow (!), and, as he keeps reminding me, he is now an adult and needs to make his own decisions.
Last weekend during a family vacation, I watched him out in the yard playing soccer with his cousins. He was having a ball, but I was having a heart attack, watching him from the deck! Earlier this week, trying to fit in lots of time with his friends before they went off to different colleges, he told me he had planned a hike in a local park one day and tennis with another friend another day. Tennis! I tried to keep quiet (no, really, I did...for a minute or so...), but I ended up telling him that was too much, that he had to save up his energy for moving onto campus this weekend and starting classes next week. We got into an argument over it, with him reminding me again that he is an adult. I know that, and I know that he will be making all of these decisions for himself starting tomorrow...and probably making a lot of mistakes, too.
I am trying to let go, but I resent that he has to worry about this in the first place. It's one thing for me, at 47, to be living a cautious life, living within my limits and carefully restricting my activities. But he is only 18 years old and heading off to college! My own college years were characterized by reckless abandonment. Isn't that the essence of youth? Freedom? It breaks my heart that he has to live this cautious life, though of course, I am grateful that he is able to go to college at all, even with so many restrictions and cautions. This illness is just so unfair, especially when it affects children and young people.