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.
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.