It’s been half a year since I last blogged about my struggles with chronic fatigue syndrome (CFS), and perhaps some of you are wondering whether my situation has improved or whether I’ve fallen off the face of the earth. Yes, I’m still alive and kicking and still very much in the editing game. This fall I completed two 100,000+-word novels without wearing myself out (it really helped that both books were well written and thoroughly absorbing, and their talented authors lovely to deal with). Six months ago I wouldn’t have dreamed of taking on such lengthy projects.
I continue to pull myself up from the depths of CFS after having been mired in it for a good couple of years (see previous post for a taste of what having this illness is like). In an early-morning burst of optimism, I nearly called this blog post “Hurtling Toward Normalcy,” but the reality is that my progress has been a steady stroll instead of anything as dramatic as hurtling. So “edging” seemed more accurate.
One day last week, I realized how amazingly close to normal I was feeling. I was lunching with a friend in a place with a small-town diner feel. It was busy–lots of people, lots of animated conversations going on around us. All that stimulation usually exerts a powerful effect on my nervous system, and I feel over-the-top wired, as if I’m buzzing inside. The sensation is anxiety-provoking–I just want to flee to quieter quarters–and exhausting. You see, with CFS your nervous system is already stuck in fight-or-flight mode, so any added stimulation easily overwhelms you. Lights seem too bright, sounds too loud, and you feel these sensations wearing at you, draining away your energy. This aspect of CFS is one reason I’ve socialized only rarely over the last couple of years; it’s just too difficult. But last week in the restaurant, I felt calm and relaxed and barely noticed the presence of all the other people around me. It was a breakthrough moment, and I took the time to savour this victory. I’m still celebrating it.
Overall, I’ve started to feel physically stronger, especially in the last couple of months. What can I attribute the improvements to? In August I began a healing program, ANS Rewire, that’s specially designed for people with CFS/fibromyalgia. It’s based on the premise that both these illnesses are rooted in a dysfunction of the autonomic nervous system (ANS), and that correcting this dysfunction eliminates the symptoms and restores our health. The man who developed the program, Dan Neuffer, is a physicist who became ill with severe CFS/fibromyalgia and was determined to get well again. He applied his talents for scientific research and discovered that the symptoms of these illnesses pointed to an unbalanced autonomic nervous system that flip-flops erratically from one extreme to another in attempts to find equilibrium. Searching for a solution, Dan was led to the concept of neuroplasticity and developed a technique for rewiring the brain to create new neural pathways to replace the old ones that maintain the ANS dysfunction and therefore our illness. The rewiring technique, or neural retraining, is one of the pillars of Dan’s program, but he also includes many supportive strategies. Indeed, ANS Rewire is the most comprehensive neural retraining program I’ve seen, as apart from the central rewiring technique Dan teaches mindfulness meditation to bring down brain arousal and includes strategies to improve nutrition and sleep and cope with pain. As well, he addresses how to use exercise–perhaps the biggest bugbear to those of us with CFS/fibromyalgia–to steer us toward recovery. Because of ANS Rewire, I began to view my illness differently, realizing I could impact it through how I thought of it and myself and how I acted every single day. Dan’s program has put me in the driver’s seat.
Even with such powerful and easy-to-use tools at my disposal, a robust recovery doesn’t happen overnight, and I’m still inching my way there. But I’m participating more fully in my life again and feel less isolated than I used to. In September, just a few days after completing ANS Rewire, I attended my aunt’s ninetieth birthday party out of town, and despite challenging moments during the trip and exhaustion afterwards I bounced back more quickly than I imagined I would. In November I started attending a gentle exercise class, Feldenkrais, which enhances body awareness–a key component of the rewiring process. And things just keep getting better: early in the new year, we’ll be moving to another apartment–one that’s smaller, cheaper, brighter, and free of the mould that’s plagued one of the bathrooms in our present apartment. Six months ago, I couldn’t even contemplate moving because I didn’t have the strength to sort through all my possessions, let alone pack anything.
It’s been a tough road to travel, and although I’m not where I ultimately want to be, my destination is beginning to feel as if it’s right around the corner.