Chronic Fatigue Syndrome: When the Practitioner Became Patient — A Detailed Exploration. Part 1.
A Story of Fatigue Misunderstood
“I would never wish that upon you,”
This client was so giving, so caring, so ready to enjoy life, you’d think the world would stop turning if she up and left for Mars. Even on her off days, there’s a care about her and a twinkle in her eyes that was unparalleled in all my classes except in the occasional visit by her grandson (a baby!).
For many years I had been helping clients like her manage the physical side of their condition through Innovations in Pilates, Stretch Therapy and Some-Of-My-Own-Magic-&-Mindfulness. Their condition is a collection of symptoms, a syndrome, that comes together insidiously at first. It then takes on a life of its own, exponentially, it seems, thwarting all attempts at healing. The most common names for the condition are myalgic encephalomyelitis and chronic fatigue syndrome. Often they get bundled together as ME/CFS. Me, well, I just prefer CFS and the reasons for that, I hope, will become clear soon enough.
Now, here I was, wrestling with my own version of CFS, the very thing that had brought these people into my life. I had joined the ranks of those I formerly taught to fight, and was now thrust into the frontline of the enemy, who as it turned out, was a far more vicious foe than I had ever understood.
That’s why I want to share this story. As a practitioner of physical training and rehabilitation for many years, I had made a very deliberate study of the psychological and relational elements of working with clients. I completed a degree in human anatomy & physiology; also a degree in human psychology. I continued to read psychology, I had a couple of different psychologists as mentors and colleagues to help expand my understanding of behavioural change and counselling and saw one to help me nut through some stuff within myself. I read widely in every area I worked with in a client. In short, I worked very hard to understand my clients and their predicament.
I had family and friends who’d experienced CFS while I grew up. I had seen first hand over many years how it affects a person and I had developed a strong empathy and patience for people experiencing those symptoms. Therefore, when I finally had regular CFS clients — rather than the one or two in the gyms — I felt ready enough to work with them. I knew there were huge gaps in my knowledge base but you have to start somewhere.
I met them where they were at. They would come to me for a 40–60 minute class. They would exercise for about 20 minutes on a good day, with however long they needed to recover between exercises. Over time their bodies adapted, their minds adapted and we saw some great progress. They became more able to handle a full 50 minute hour.
Some time into my private practise I came across Active Health Clinic, and I did some practical hours with them during my Master degree. So I started referring clients to them to help with the finer points of life; Nathan and his team really knew what they were doing. Real progress was being made. And it occurred to me more than once that I’m doing all right at this thing. I understood what my clients were going through as much I could and I thought I understood it well. Can you hear the ominous music?
Stress is Your Friend
Some more about me, perhaps. Please, humour me, indulge me, if you dare.
During this time, I started running my first commercial Movement & Pilates Studio. It was a large space, but in a terrible demographic for me, and as it turns out, I had a lot to learn about running a business on that scale (Translation: I was a terrible administrator and marketer). We decided to move to a smaller space (Translation: My accountant told me we had to or we’d be in a much worse place financially in a couple of years), one I could more easily handle and that suited my class sizes better — and we found the perfect space (Translation: I LOVED THIS STUDIO). So I started my second Movement & Pilates Studio, this one a boutique space with some unique equipment.
Also during this time, my wife, with two children, got pregnant again. We shifted in to live with a close friend, closer to the studio. Oh, and I was studying my Masters degree. So, running a small business as the sole operator, a pregnant wife who gave birth to a cute kid which meant three kids under three years of age, and me studying a post-grad science degree. And then some other health complications.
To cut a very long story short, I had a number of years in a row where I had some significant, very taxing and major stressful events. Some of them I won’t bother mentioning but trust me, they were all huge and constant.
We need stress to live. To survive. To adapt. It makes us stronger. So I kept forging ahead.
The Friend that Stayed Too Long
Yes, stress is your friend. But all systems have a limit. I found mine. Somewhere between ‘having trouble paying rent’ and ‘training for an endurance event’.
I thought to myself, I know how to deal with all this stress. I need to do some exercise! I am, after all, an exercise physiologist. So I found an obstacle course event that I could train for. I’d only given myself 5 weeks to do that, so I wrote the most brilliant, get ready program you could dream of. My upper body strength and core control was fine, I just needed to up the cardio.
I enlisted a bunch of my mates who wanted to get fit and told them they can join me — I’ll do my workout and they can do my workout with me! Hah! They took the bate and I started training. It was a brilliant program, so well written, complete with perfect recovery times. If I was my own mentor, I would have been most proud.
Of course, stress comes in all forms. It’s more than financial, relational or cognitive stress. Physical training is stress. Especially the kind of high intensity work I was doing.
Normally, when I start training like this (sprints, intervals, big bodyweight lifts), my wife and I watch our bank account go down as my appetite goes up. You could say I’m one of the blessed ones. My body responds almost instantly, it gets fitter and stronger and my body composition changes. And then there’s my mind.
My mind! Oh, how I love the feeling of a stimulated, fit brain! The mind, you see, is simply something that emerges from the whole of the body, and when the whole of the body feels great (like when it’s getting fitter and stronger doing what it loves), then the mind feels great.
But over the next few weeks of training, my mind didn’t do that. It started to feel sluggish. I began forgetting things — really forgetting things — and I had increasing difficulty finding words. Me? Difficulty finding words? Unheard of.
And then I started sleeping. Oh, you know how it is. You’ve got a client on the floor doing a weird version of a pushup, and you start yawning, closing your eyes. And you have to find ways to let your clients do some sort of exercise with their eyes close, so you can sit down and shut your eyes and sleep for the next 6 repetitions. This is not the sleep of depression, or deprivation from sick children; this is an instantaneous need to close your eyes. There’s not voluntary to it. It’s not even a compulsion. It will happen and you will obey.
Also, forget about demonstrating exercises! That’s a surefire recipe for disaster. Any chance to lay down on the ground would signal my body to go into sleep mode, like closing the monitor on my laptop. And like driving my car home at night. Or in the afternoon, the whole 2km from work. I’d get to about 400 metre and barely be able to keep my eyes open — sometimes I’d have to pull over for a microsleep while not driving, because we all know what happens if you microsleep while driving (Hint: Your car does not turn into a pumpkin but you might).
In the midst of this my knee started hurting. It got worse the more I trained. Definitely a medial meniscus injury of some sort, all the pain and movement patterns were there. I could feel without a doubt that the knee was beyond help; it was more than a mere physical thing. This was something my body was incapable of healing itself from at that time and I figured it was going to hurt itself more thoroughly in the next couple of weeks whether I did the event or not. I didn’t have the money or energy to seek medical help at that time. Well, thought I, Better that happening while I was in the Aussie bush than in a Pilates studio.
The day of the event arrived and, as it turns out, it was a beautiful day for a walk in the Australian bush (which I love!). Part way into the event my knee did some unfamiliar popping, clicking and moving, rendering me unable to bend the knee past its slightly bent position (without considerable pain). So I happily limped my way around the course and finished it in good time still.
Drawing On Tomorrow’s Energy Today
The next week, though, I was dysfunctional. Not just in terms of my knee but my mind, my energy, my fatigue. While I was able to start the event running, walk the last three quarters and climb, swing and crawl all the bits in between runs, and feel great at the end of it, it took its toll.
I wasn’t running on Saturday’s energy, though. I didn’t have enough reserve in the tank for that. It was like the time I took my motorbike for a spin and had forgotten to fill the tank up. I was running on the reserve fuel. The stuff that had been kept for an emergency and not the stuff for everything else. My bike started spluttering on the road, putted up the hill and then slowed to a stop, giving me nothing. During the lead up to that endurance event my body had been giving me warning signs: persistent and heavy tiredness that never improved with sleep or rest, fatigue (notice that they’re different), mental blurriness and injuries that wouldn’t heal. I was running on reserve.
We say that what you’re doing is borrowing tomorrow’s energy today. It’s a nice analogy. It’s not enough, though. I wasn’t borrowing tomorrow’s energy. I was out right stealing energy from the next two months! While I suffered for it, my family paid a greater price. They still do.
The Beginnings of Learnings
When I saw my health practitioner in the following week or two, he said he was astounded that I could even walk in the door. I’d entered the realm of The Fatigued.
The immense weight of stress — and not just the massive stress imposed on me from the outside but the stress I imposed on myself from within — had taken its toll on my body, who knew how to respond to the stress. I just didn’t know how to coach it so that the load of the stress was moderated appropriately.
As I marched on I began to implement some systems and processes to manage the stressful sides of life. Bath times, more mindfulness meditations, time spent barefoot in nature enjoying the colours, sounds and textures. Doing things that nourish my soul.
I learned very quickly that being a practitioner who worked closely with people suffering from CFS was not the same as being a person suffering from CFS. It‘s very difficult for me to know what it’s like to wade through this experience without actually having it. Sure, for an empathic practitioner treating sufferers on a constant, daily basis, chances are they’ll get it. But for the rest of us? There’s a lot to be said for total immersion.
You see, I falsely believed that I understood because I had empathy and gained results with my clients. What has become abundantly clear to me, however, is that without suffering through CFS, I would never conceive how violently this condition would rip my identity up into shreds and steal from me the things I’d founded my life upon.
I sound dramatic. I know. You have no obligation to trust me with this and I have no expectation that anyone will. I’m just asking you to hear me out. As a healthcare practitioner (and at the risk of labouring this important point) I believed that because of my education, my experience, my successes and my empathy that I understood this condition far better than I did.
And that’s why I write these essays. I want other practitioners to hear how CFS affects the body through another healthcare practitioner. I hope that through these few writings I can help some other professionals and carers of ME/CFS sufferers understand that what we describe to them as happening may not be what is actually happening. And that we might be considerably wrong in some areas.
Another hope is that ME/CFS sufferers will be encouraged as I attempt to explain from my understanding of anatomy, physiology and psychology what I think is happening when I experience CFS. This is not an analysis of the research literature (which is much thinner than we need it to be) but an analysis of my experience and how I explain it using my current knowledge of the human body and person. I hope to give words and thoughts to some things that have been jumbled, misunderstood or not even realised.
An Open Apology
Finally, it’s my sincere hope that some of my fellow sufferers will hear in my words a most heart felt apology for the times you may have felt unheard by your practitioners. It sucks, I know it does, because that’s my story, too.
This doesn’t mean that every negative experience is their fault; we are all part of this mess we call life and we all dance the uncertain dance of social connectedness. No, I address those places that people trained in medical, psychological and physiological disciplines have failed to use their considerable learning to treat you like a legitimate other, like a person with a real and unique experience that doesn’t quite fit a nice box. It’s not a broken bone or a bacterial infection to be seen under x-ray or microscope. Just because we can’t see the cause of someone’s torture does not excuse us from acting as if it doesn’t exist.
The next article to come out will explore the symptoms of CFS in a lot of detail. I’ll explore my understanding of the multiple types of fatigue that I’ve experienced, and attempt to categorise them physiologically, and suggest some other possible fatigue causes. We look at the debilitating experience of brain fog (somewhat akin to chemo brain in those who’ve had treatment for cancer) and some of the fascinating, debilitating and life-altering experiences it can bring. Some of it is terrifying (ever been to a shopping centre you’re intimately familiar with and then all of a sudden you don’t recognise any of it?), some of it is frustrating (forgetfulness, anyone?) and some serves to separate you from society in some pretty impressive ways (hyperacousis, anyone?).
Please, if you like this piece or any of the others, I invite you to recommend it by clicking on the little heart icon below, so that more people might get a chance to see it.