Those of us with severe CFS/FMS/chronic Lyme, etc., face some unique choices that the healthy population doesn’t face. Anytime we do something, beyond laying in bed or the bare minimum of necessary actions (going to the bathroom, taking the dog out, making a cup of tea), we do it knowing there will be a price to pay. How high a price depends entirely on how much energy we expend, and it really doesn’t matter whether that energy is physical, emotional, or mental – it all comes at a cost.
We live in a world where we have very little energy to expend – we must stay within our “energy envelope.” Our bodies no longer make energy on a cellular level correctly – there are long & very complicated reasons why, but that’s beyond the scope of this post.
Suffice it to say, even taking a shower can be completely exhausting. A simple shower is usually so exhausting as to be all we can accomplish in one day.
But sometimes, we have to do something, go somewhere, and we have it within our means to accomplish that, knowing fully that we will pay for it in greatly increased pain, and agonizing fatigue, and overwhelming weakness, for days or weeks afterward. So we face these very unique choices: do I take a Nuvigil (an anti-narcolepsy medication), which will give me the illusion, for about 3 hours, of having energy, so I can… take Rhiannon to the grocery store for milk & stocking up on food? go to my doctor’s appointment without risking having an accident from driving while exhausted? go see my mother? go out to dinner with my eldest daughter & her husband? or maybe, if I want to do it very badly, even go camping with Rhiannon at the camp run by our spiritual community?
Make no mistake about it: the Nuvigil & I have a serious love/hate relationship. Just as I did with the Ritalin that preceded it.
Doctors give us patients these meds because they recognize there are indeed times when we need to leave home, go shopping, have a life outside our bedrooms. But we patients know only too well that while they grant us the ability to do these things, that we will pay a steep price afterward. These things are only within reach through illusion: the illusion that our energy envelope is bigger than it really is. Our bodies have extremely minimal reserves of cellular energy. Act outside our energy envelope, drain our reserves, and we PAY.
It has a name, a stupid name: Post-Exertional Malaise or PEM. More like Post-Exertional Hell. Take the worst hangover you’ve ever had, add in being run over by a semi-, and you might be able to imagine it.
PEM is one of the most distinguishing features of CFS. This is not your garden variety “wow, I did a lot today, and I’m tired.” No, this is different, both in severity, and in how long it lasts… two days, four days, a week, sometimes much longer, depending on how long we operated outside our energy envelopes. And, depending on how long we’ve been sick, how entirely dysfunctional our bodies are.
For a long time, I was able to keep up my business by taking a dose of Ritalin or Provigil (Nuvigil’s predecessor) when I woke up, then another when I took my afternoon rest. When they wore off, I crashed, and often went straight from computer to bed. Come Friday afternoon, I was dragging, as the meds found less & less reserves to draw on. I often slept through the weekend, barely budging except to pee & swallow a few bites.
But I did it, put myself through that, so I could afford a house, vehicles, clothes & computers & things for my girls. I made the unique choice, because I’m a mother, and wanted to provide for them as I’d never been able to provide before. Because I love them.
Things are harder now. I’m sicker. The choice is harder to make, because the Post-Exertional Hell is worse, comes sooner, lasts longer. But still, there are times, and activities, that are worth it.
Last weekend we went camping, at the Beltaine (May Day) gathering that is a tradition for us. We had a great time. And while I had to retire earlier than I would have liked, sat down more than I would have liked, had to lay down & rest more than I would have liked, and the drive back home was somewhat dicey, seeing as it was day 3 on Nuvigil, I think I managed it better than I expected to.
I socialized – actually had conversations with people other than Rhiannon or my doctor (that alone is quite rare) . I laughed & smiled. Dressed up a little, in a snazzy tank top & flowy skirt (instead of a nightgown). Got to watch the Maypole go up & be braided with ribbons amongst much laughter. Walked slowly amongst the Standing Stones, my antler-topped staff in hand. Many of the Stones I’ve seen go up – they are old friends.
At least as importantly, Rhiannon got to get out amongst other people, see old friends, laugh & smile & dance.
The post-exertional Hell has been bad, and I’d be cursing a lot more were it not for my pain meds. I lifted too much with my still-healing torn rotator cuff (shoulder) and it’s giving me a lot of grief, as is the trashed knee. My whole body is giving me a lot of grief.
I made the unique choice, to go, to do something outside the confines of my home, and even if payback is truly Hell, I don’t regret it, not even for a minute.