My graded exercise program didn't start out as an exercise program at all; in fact, I was very reluctant to do any exercise at all when I first started it. I'd read horror stories on the Internet about people having terrible setbacks doing graded exercise guided by well-meaning doctors, and my own experience was that any time I exerted myself physically, I paid for it big time with post-exertional malaise or a killer headache the next day.
When my Mickel Therapist suggested that I try experimenting with different activities in the afternoons when my most severe symptoms of overwhelming tiredness would hit me, I was a little skeptical. All I wanted to do around 3 or 4 PM each day was go to bed and lie down. If my body kept telling me I was exhausted, then obviously I needed to rest. But all that rest every day wasn't making me feel better; in fact on the days when I fell asleep mid-afternoon, I tended to wake up feeling worse... much worse. Even just writing about it now is bringing back anxiety for me.
One of the ideas behind Mickel Therapy is that the body sends us symptoms as a message to get us to change our behaviour. I'm still a little skeptical; after all, if the symptom is overwhelming tiredness and the behavioural change required is more or different activity instead of just lying down, then what we have... is a failure... to communicate. But nevertheless, I was prepared to play with the idea that my body might be "bored" and needing stimulation rather than rest. When I thought about what activities I used to enjoy as a kid that I hadn't done since falling ill, I thought of riding my mountain bike. So I started doing that mid-afternoon when the most severe fatigue hit me, instead of lying down.
Mind you, I wasn't riding it for exercise: I was riding it just to give my body something interesting to do. So each afternoon I'd get on my bike and ride figure-8's around the culdesac-like corner of my street out the front of the complex where I live. I was very conscious not to exert myself or to raise my heart rate. Cardio exercise always brought on the dreaded post-exertional malaise; and I wasn't exercising... I was just moving my body.
I can't say I noticed any immediate change in my symptoms as a result of this, which really frustrated the Mickel Therapy process since the idea is to try different things until you find something that resolves the symptom. I came in from each bike ride feeling just as tired as I had gone out. I talked this over with my Mickel Therapist, who seemed convinced that he saw progress in the symptom/activity/result tables that I filled in and sent him. He also said I should avoid boring activities; but my most boring activity was filling in the Mickel Therapy tables. I wasn't seeing the progress he seemed to think he was, and I started getting very angry with him. The process also seemed to be making me much more anxious, which felt unbearable. I heard a talk by Dr Mickel where he talked about some people encountering severe anxiety when doing the therapy, and I felt disappointed that Mickel Therapy didn't seem to have any useful tools for dealing with anxiety and anger.
I ended up discontinuing the work with my Mickel Therapist, but I remembered what Fleur, a passionate Mickel Therapy advocate who attributes her miraculous recovery to MT, had told me about her experience of realising that her body was really bored. So I continued my afternoon cycling routine most days; it felt better than lying in bed: the movement gave my mind a distraction from constant anxiety-inducing thoughts about being ill, and since I didn't push the envelope at all or get my heart rate up, I came back in feeling pretty much the same as when I went out. No post-exertional malaise.
After a couple of weeks I found myself getting bored with the street I live in, and venturing down to a local park to ride my figure-8s. Then further afield to a local sporting ground, which happened to have a skate ramp that was idle most weekdays. So I'd jump on and ride around and around the skate ramp from one end to the other and back home again. It got me out of my head, and felt like fun. I still wasn't exercising, I was just moving my body. But each day I went out slightly longer than the day before.
One of the things that has kept me partly-sane during the five years I've been ill has been learning to play music. In fact, I bought my first guitar right around the time my CFS symptoms hit me. Playing guitar is sufficiently engrossing that I get into a state of flow where I forget about being ill, and it's fun to do with other people. It also doesn't take much physical energy. However, I get bored easily and although I'm nowhere near mastering guitar I decided I wanted a new challenge.
I had wanted to learn to play drums for several years; I played in a Samba band at the time I fell ill, and one thing I really missed was jamming and gigging with my other band members. But I played tamborim which isn't the sexiest instrument for a guy to play. Part of me wants to be a rock star and would love to play drums in a rock band. Also, I figured this would give me an outlet for some of the anger that I was constantly encountering. I have a punching bag that I often hit when I'm feeling really angry, but finding the motivation to work through all the anger is a challenge when I feel so exhausted that I just want to rest as soon as I start hitting the thing. Having a drumset to hit would be more motivating, I thought. So about 8 months ago I went out and bought myself a Roland electronic drumkit which is relatively quiet if you don't have the headphones on, so it doesn't annoy the neighbours. I figured I'd be able to bash my drums when I was angry, play for fun when I needed something to do, and one day maybe get on stage and be a rock star.
Playing drums is great for me for several reasons. Although I have a decent sense of rhythm from my time in the Samba band and the years I spent dancing before falling ill, I had never played a full rock drumset before. I didn't have the co-ordination initially, so I had to learn almost from scratch. This meant that I couldn't overdo it and push myself too hard physically. It took time to learn to coordinate my two legs and two arms to play even basic rock rhythms, and over this time my stamina gradually increased without being pushed into the dreaded cardio zone that seemed to trigger the old post-exertional malaise.
Also I've come to conclude that CFS is a nervous system disorder, and I figured the rhythmic stimulation of playing drums was most likely a good thing for my nervous system. Almost all the shamanic healing rituals I've done have involved drumming, and there's just something calming about the rhythm of a drum. I suspect it's because it reminds us of our mother's heartbeat while we were in the womb; surely it's not just coincidence that the tempo of most music is around the same tempo as a heartbeat. Also, playing drums requires enough concentration that I get distracted from the constant thoughts of being ill. As I improve on playing any given rhythm, I find it requires less and less concentration and the distressing thoughts start to creep back in... at which point I just move on to a new or more complicated rhythm.
I've found playing drums quite addictive, and wanted to play as much as possible. My upstairs neighbour put the kybosh on that when she complained that the kick-pedal really disturbed her. She works during regular office hours which means I can only play 9 to 5 when she's at work. This turns out not to be a bad thing...
When my naturopath and I got the test results showing that my cortisol levels were extremely high, my mission in life became lowering my nighttime cortisol levels to the point where my body can get a decent rest so that I'll eventually recover. My naturopath pointed out that in order to do this, I needed to exercise first thing in the morning and limit my evening activity. So no late-night drums for me. Everything started to make sense at this point: I understood why I woke up with a headache after going out dancing at night. Physical activity increases cortisol levels, after which they drop further than if you hadn't exercised at all. But the drop takes time: if the activity occurs late at night, there isn't time for the cortisol levels to drop before hitting the bed. Especially if the level is very high to begin with.
Although my afternoon bike rides were a good way to distract myself from distressing thoughts and give my body something interesting to do (who knows, perhaps Mickel Therapy isn't complete bullshit after all), afternoon wasn't the ideal time to be exerting myself. It would have been better to go for a ride first thing in the morning at dawn, when my naturopath was advising me to get up. At first, I got up at dawn and did some Yoga out in the sun or meditated with my eyes open to let the sunlight onto my retina; this resets our circadian rhythm and is the ultimate cure for the insomnia that prevented me getting to sleep. At first, getting up at dawn was hard. Really hard. I just can't stress how hard I found it to get up at the crack of dawn every day when I felt totally exhausted all the time. But I realised that getting my sleep pattern sorted out was key to recovering from CFS. This was the second most important thing, after the whole cortisol-reduction mission.
So I shifted my afternoon bike rides to the morning. I still wasn't really doing them for exercise, but don't tell my naturopath that. The idea was simply to get my body moving. I also found that it was much easier to remember to do the deep breathing necessary to calm my nervous system, when I was requiring more oxygen due to the cycling. Initially I just rode around my street again, or down to the park with the sports field. I'd stop along the way and do some meditation too. Then I discovered a really nice ride that winds its way through a number of parks by the river in a neighbouring suburb, and I started doing that regularly. Somewhere along the way I started actually exercising. Still not intense cardio, but just moving my body a little more each day. I never pushed it, and I never even came home feeling tired after these rides; or at least, no more tired than when I left home. In fact, I felt more energised afterwards; and that's what I reminded myself on the mornings when I'd lie in bed thinking "I don't want to get up and go for a ride; I'm too tired".
Another physical activity I took on was a conscious dance practise called 5 Rhythms, after another woman I met who said she'd suffered from chronic fatigue told me she found it really helpful. So I started going to Radiance Dance in Sydney on Sunday mornings and the occasional Wednesday evenings. It's a form of moving meditation: a spiritual practice where you dance in various different free-form styles while working through emotions. It's also got a really nice community connected to it which I like; I realised that my community had shrunk to the point where all my friends had CFS. While other sufferers are great when it comes to understanding how I feel, they aren't overly inspiring and there were times when I just wanted to talk about something else. With the insight about cortisol profiles during the day and evening, I stopped going during the evening and just stuck to Sunday mornings. At first, I felt terribly self-conscious doing the ecstatic dance thing and just went and sat in the corner feeling like a fool. When I did dance, I had to stop and rest ever 15 minutes or so. But I saw other people dancing unselfconsciously and decided to stick at it and make it my new community. After a while I really got into it, and now it's like going to church every Sunday morning for me.
There have been times when I've overdone it on this whole exercise thing, and when that happens the penalty I pay is waking up with a killer headache that wipes me out and lasts all day. The antidote for this is getting to bed by 10PM every night, and not going too hard at the exercise. I did a boxing class at the local gym a couple of weeks ago in the hope that it would help me get out some of the anger I'd been feeling lately; but it turned out to be an intense cardio workout that I just wasn't up for. Plus it hurt my hands, which isn't a good thing if I want to be a musician. I woke up the next day with a killer headache, vowing never to do that to myself again. I also recognise that in between periods of exercise, I need periods of physical and mental rest. But yes, I do actually call it exercise now.
I've also added some muscular exercises to my routine on the advice of my physiotherapist, in response to the debilitating headaches I was getting. To be honest, I don't think they're helping the headaches much since I suspect the headaches are just a symptom of the high cortisol (i.e. stress), but the exercises are designed to improve my posture by strengthening my upper back muscles which is a good thing anyway. I've also started doing sit-ups each day to improve my core strength. This is important when I'm sitting on a drum throne since they have no back support and core strength and posture become really important.
Which leads me to where I am now with all this. My full-time job at the moment is still recovering from chronic fatigue. The pay is terrible, but the super scheme is awesome. Monday, Wednesday and Fridays are my exercise days where I get up at dawn and do my bike ride, which goes for about an hour and a half. Along the way I stop to meditate by the river, so it's usually about two hours all up. It's winter here now, and it's f__king freezing, but I do it anyway. Tuesday and Thursday I take it easier, getting up at dawn and going for a walk down to the river to meditate. When I get home I have breakfast then I play my drums for a few hours, taking breaks whenever I feel tired to do something else like read email, write something or play my keyboard. When I worry about what I'm doing with my life, I remind myself that my full-time job is doing this right now, and learning to play music on the side.
I also go out whenever I can to jam with other musicians, which totally distracts me from feeling ill. I'll regularly play drums almost non-stop for 4 or 5 hours when doing this, and not feel particularly tired at the end. I also go to a theatre class once a week with Milk Crate Theatre which has been a godsend for me because all their classes, rehearsals and even their shows are on during the day; so I can get onstage and still be in bed by the magic 10PM.
I'm much, much fitter now as a result of all this regular physical activity over the last year. I find I very rarely feel true physical tiredness; it's more a mental and/or emotional exhaustion that I feel now. I've learned that often when I think I feel tired, what I'm really feeling is anxious. I go to an anxiety support group once a week where I deal with this. I rarely feel anxious when I'm playing music. I get anxious when I don't know what to do, and the solution for me is to pick something and go do it. Like write this article, say.
I know it's been a long time between updates and I regret that a little since I've really been making a lot more progress over the last few months than I did in the years before that. But I also realised that sitting in front of a screen being stimulated with constant Facebook and email updates isn't good for my cortisol levels. Plus, I have music to play!