Tag Archives: chronic fatigue syndrome

Edging Toward Normalcy: The Healing Continues

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.

 

A Different Kind of Tired

I’ve written the following post to recognize International Awareness Day for ME/CFS, and dedicate it to all my courageous friends who struggle every day with CFS. 

CFS

Anyone who visits this site regularly will have noticed a dwindling of blog posts over the last couple of years. I’ve never thought of myself as a blogger–I lack the dedication. But more than that, I’m mostly too tired to blog. If it sounds like a lame excuse, it’s not. I have an illness called chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME for short).

“Yeah, I’m tired a lot too,” I can almost hear some readers saying, though I know that wouldn’t be you. Allow me to be perfectly clear: CFS involves a different kind of tired. What sets it apart from everyday tiredness is that we, people with CFS, don’t recover our energy and strength after a good night’s sleep (which, paradoxically, is difficult for us to obtain). One of the defining characteristics of the syndrome is exertion intolerance. Instead of feeling invigorated by exercise, it drains us, and for long periods (so please don’t tell us we need to exercise more). Recently, it took me three weeks to recover from a three-hour lunch and shopping outing. This hallmark of the illness, exertion intolerance, has spawned a whole new name for CFS, systemic exertion intolerance disease (SEID), a moniker that hasn’t really caught on yet even though it more accurately captures the complex nature of the illness than “chronic fatigue syndrome” does.

CFS is also about so much more than being tired. Apart from exertion intolerance, a host of other symptoms afflict us. My symptoms include persistent muscle pain and weakness, unrefreshing sleep, and light-headedness. The combination of symptoms we experience can knock us flat; approximately a quarter of us are bedridden for months, sometimes years. The rest of us limp through our days feeling  debilitated but somehow managing to live half a life. Someone’s pulled the plug on us, and the outlet is nowhere to be seen. Sometimes we slide into CFS gradually, but often the onset is dramatic, preceded by a virus or a traumatic event like an accident. For me it was a virus, and I remember all too vividly the exact day–March 27, 1998–when CFS disconnected me from my power source. After a couple of years, it gradually went into remission, and for several years I enjoyed good health. Unfortunately, it re-emerged in 2014, following a period of intense work during which I was writing a novel in addition to taking on too many editing projects.

I’m managing half a life now–on good days, three-quarters. Even with my Jell-O legs, I can go for a walk with the dog once a day; I’m up to forty-five minutes reliably and sometimes make it to an hour. Occasionally, I’ll take public transit for a short jaunt somewhere. I still work as a freelance editor. If I take at least three horizontal rest breaks during the day, I can work at the computer for three,  sometimes four hours a day without completely burning myself out. Although my world has narrowed because of CFS,  I’m doing better than I was a few months ago and am sure I’ll continue to improve.

There are scores of people out there with this illness–some 400,000 in Canada, at least a million in the US, and 250,000 in the UK (and these numbers are on the conservative side).  More of us are female than male. CFS can hit at any age. I was thirty-four when I was diagnosed with it, but I’m alarmed to see how often it strikes young people who are only just starting to find their way in life.

Sadly, CFS is often a wholesale wrecker of lives; careers and relationships can be destroyed by this illness, which may be misunderstood by those around us. We look perfectly healthy and sometimes encounter skepticism from our friends and families. To the ignorant, we may appear bone-lazy, but many of us previously led active lives and had a strong achievement orientation, a tendency that, if continued, perpetuates our condition. The lack of sensitivity and support from others is hurtful and isolating for those with CFS.

Some doctors are skeptical too, but those who don’t dismiss our illness often don’t know how to help us because CFS is so challenging to treat. They commonly prescribe cognitive behavioural therapy, graded exercise, or symptomatic relief in the form of antidepressants and sleep aids. These measures often don’t get at the root of the illness and may even set us back (our bodies are very sensitive to medications, and exercise programs are something we should undertake with the utmost caution). Many of us find some relief in alternative remedies. For me, a good naturopath is essential, but I’ve had bad ones who have made me feel worse.

I paint a bleak picture, but at the same time I’m optimistic. Why? Because it’s entirely possible to recover from CFS; I put it into remission once before and expect I can do it again. I’ve also read countless recovery stories in which people go on to lead active lives. But there is no easy or universal solution for those of us with CFS; we must each find our own recovery path. Nonetheless, it’s possible to make a few generalizations about what helps.

Because we usually have food sensitivities, we tend to improve by cutting out dairy, gluten, and other harmful foods (once we are tested to determine the culprits). It’s also essential to find a way of calming down our nervous systems, which get stuck in a fight-or-flight response. Calming is a prerequisite to being able to heal, as I learned in the excellent online program, Secrets to Recovery. I use guided meditation and visualization daily to achieve this calming effect. Avoiding stress is critical for people with CFS, as it causes flare-ups of the illness. There’s no question in my mind that experiencing both a concussion and horrible side effects from  adrenal supplements I was prescribed last year greatly exacerbated my CFS. We must carve out tranquil time in each day to rest and devote ourselves to getting better. Pacing ourselves and not pushing beyond our activity limit is also vital to our recovery. Determining precisely where that limit is can be frustrating; it often seems like a moving target, and inevitably we exceed it at times.

I’ve also benefited from IV nutrients such as Myers’ cocktails (no, they don’t contain alcohol or come in a martini glass) and Bach flower remedies. Supporting our recovery often requires solutions outside the mainstream, and for me these unorthodox remedies have had positive results. As people with CFS, we each have our own list of what’s most effective for us. Certainly we can heal, but doing so takes compassion for ourselves, time, patience, and–perhaps more than anything–a generous helping of hope.