Coming back after a CFS crash is not as straightforward as one might think. I am quite often surprised by this myself, even after my many and varied experiences with it.
Life is ticking along just fine, feeling just a bit more "normal" as time goes on. Then one day... a wave of dizziness, followed by another one. Later that day, the fairly benign dizziness is replaced by the inner lurching and disorientation of vertigo. White noise in ears follows.
Thoughts begin to break up and break down. Thinking, I realize, is now out of the question. (sigh)
Arms, hands and face are buzzing and tingling and numb all at the same time. The sick woozy feeling in my bones begins to undulate like seasickness. I'd forgotten how wretched that one feels. It is maybe the worst sensation of the bunch. I feel poisoned.
And that's that, really. The CFS crash has begun its descent upon me and while I can possibly shorten its duration, maybe reduce the symptoms somewhat, once we've reached this stage, it's not a question of if I will bow out of my life again, it is a question of -- for how long? And that is always a question I am anxious to learn the answer to. And, it is always a question that I underestimate the answer to.
This time I thought, probably a week. I was heartened by the fact that I'd have a few relatively clear hours each day, which never used to happen. A crash always levelled me 24/7 until it was ready to back off. But this time, I had light periods from day one. Not so much a crash, more of a ... CFS bounce. Can't last long, I thought.
Thought wrong. I am mostly over it now, but it has taken more than a month. This is not news. That chronics, even chronics in recovery, can crash.
What you may not know is that afterwards, we don't just pick up where we left off. At least, I don't.
Great trends get snuffed. Hobbies get ditched. Progress in the direction of normal life grinds to a halt.
We aren't who we were before our last crash. Stuff ends up left behind, our train of thought long gone. It can affect our relationships, and our strategies leading to better work or habits or exercise. Appointments must be put off, cancelled. Your garden can die.
Your friends may go on without you. If you're lucky there will be a few who send you emails, or cards, or make phonecalls without expecting anything back while you are the drawing board again. While you are being pieced back together like Frankenstein's monster again. They linger and that is a blessing.
Most don't. They don't understand the ebbing and flowing tides of this illness. So sometimes people get lost too. Maybe they will reappear later, maybe they won't. Maybe it'll be the same as it was before. Maybe it won't. Just as, maybe where I was before this Bounce will restore itself, and maybe it won't.
This last CFS bounce has been sobering for me. Curiously, not as devastating as this sort of crap has always been in the past. I chalk this up to the bounciness of it, the times of respite in the midst of the systems failure. I was still able to write, I submitted my two articles a week to empowher.com, on time. I spent a little time on Cort Johnson's ME / CFS forums. I wrote emails, hung around on Facebook. I even managed to be upright rather than horizontal when my kids were here for my birthday. Great mercies, to me.
But definitely sobering. I saw for myself that great recovery progress or no great recovery process, I am still vulnerable. I can still lose it all.
Oh yes, it can happen. Don't kid yourself. I have had to stop kidding myself on this.
I was going for a walk a couple of weeks ago, still thinking, any day now I'm gonna be fine again. Looking at the sky, pondering my existence. This is what struck me. I love the things that have been flowering in my life. The people in my life. The writing. The freedom to come and go as I pleased. The lack of vibrating and numbness and all the other sickening CFS symptoms. The ability to think clearly alot of the time.
And I in that moment knew this. Still know it now. That, I can go ahead and show no restraint, enjoying everything to the hilt, making up for lost time. No one would fault me on this. But, if I want to be able to keep these friends, this employment, this direction, this ... freedom to be alive .... it was time to begin to exercise some serious self-discipline. Because these things could disappear forever into the night just as surely as all that I lost in the past to Chronic Fatigue Syndrome. Things I'll never get back. Never.
But if I will make a point of pulling back my energy needle, taking my foot off the gas, and ... parking it for awhile every day, this life I love can continue to blossom and eventually flourish. But I have to make the daily choice of stepping away from the computer, of spending time in my bed, of picking up a book and reading instead of writing ... just for awhile, a half hour here, an hour there, take a whole day off from time to time.
And maybe I won't have to try to pick up and reassemble the pieces ever again. That is my hope.