So, an update, following on from the last post. As always, about health.
Last week I finally got the diagnosis—I have chronic fatigue syndrome (officially referred to as ME/CFS; read why). People have asked me how I feel about this and I don’t really feel anything about it. It’s nice to have a label for how I’ve been feeling for ages, but it doesn’t actually change that much.
Exact causes are not fully known. It’s not a psychological thing, despite the fact that for a long time it was regarded by many as psychosomatic. It can be brought on by stress. It’s not caused by my depression, though symptomatically the two probably go hand in hand so it’s unsurprising that I just assumed it was depression fatigue. Thing is, my depression is mostly under control now, but the symptoms didn’t abate.
If you don’t really know what ME/CFS is, here’s a definition from the Mayo Clinic:
Chronic fatigue syndrome (CFS) is a complicated disorder characterized by extreme fatigue that lasts for at least six months and that can’t be fully explained by an underlying medical condition. The fatigue worsens with physical or mental activity, but doesn’t improve with rest.
One of the defining features of this thing is post-exertional malaise (PEM). Here is a bit about that from Emerge Australia, the national body for ME/CFS:
The central feature of ME/CFS is post-exertional malaise (PEM), which means that symptoms get worse after physical or mental activity. PEM is very disabling and causes fluctuations in a person’s health: what they may be able to do one day, they might not be able to do the next. The level of activity that triggers PEM varies. For some, it may be a short walk or writing a homework assignment. For people who are more severely unwell, it could be brushing their teeth or reading a sentence of a book. PEM is often delayed and can last days, weeks or months, making the illness difficult to manage.
The main symptoms I have as well as the fatigue include problems with thinking, concentrating, memory loss; disrupted sleep; pain or aches in the muscles, joints or head; sensitivities to light and sound.
This is why it has been so hard for me to work consistently in the past year. I just can’t guarantee from one day to the next what my capacity is going to be. Some days I can do heaps; other days, barely anything. It’s why I pulled out of two shows I was cast in, because I just couldn’t see that I would consistently be able to perform for weeks at a time. A few nights maybe, but not three weeks. It’s been a season of saying no and cancelling, which has been hard, but in some ways with things being the way they are in our COVID-gripped world, it’s perhaps not as painful as it might have been if life was steaming ahead for everyone else but me (and others with chronic illness!). And the onset of my symptoms was profound but not an abrupt shock like it was for my friend George, who basically was struck down with it suddenly. So maybe having been vaguely tired for a long time and being in a world where things being cancelled has become normal somehow lessened the blow of it.
Having said that, in the week since my GP confirmed the diagnosis (which basically means taking a bunch of tests to rule out what it’s not, because there is no diagnostic test for ME/CFS) it’s almost like my body has gone finally…we can legitimately rest! and has basically made me just sleep a lot. That’s not to say I hadn’t already been resting when I needed to, but there has still been that nagging voice telling me I’m making it up, just being lazy, making excuses, etc, etc. So I had a few jobs to do this week that have taken me ages but I have delighted in taking deliberate rest breaks.
The main thing from here on in is to work out pacing. I like the term that’s used to describe capacity: you have to stay within your energy envelope. I keep imagining myself as a letter trying to escape my paper bounds.
The other thing my GP suggested was low dose naltrexone. The full strength stuff (50mg) is used to treat people with addictions to opioids like heroin and morphine (which was alarming when I first googled it), but the low dose (1.5-4mg) has shown to help some people with chronic illness where inflammation is a problem. It’s not widely known though, and my GP was quick to stress it doesn’t work for everyone, he just has another patient who has had good results with it. So after reading a bit about it, I thought it was worth a shot. It’s not on the PBS though, and turns out regular pharmacies in Launceston don’t have it. At all. My pharmacist looked it up and said it wasn’t even in his supply chain so I might have to source it through a hospital. But I found a compounding pharmacy online that delivers Australia-wide so I’m going to give that a try.
That’s enough for now. I need to go lie down. Thanks for reading.