I Quit!

It's my birthday today, and I've decided it's time to make a few changes in my life. Principally, I'm quitting my mostly-full-time job of working on recovering from Chronic Fatigue Syndrome so I can focus on other things; like having a great life!

My symptoms are relatively mild now: anxiety, tension in my head, runny nose and tiredness mostly in the afternoons. But they're not so incapacitating now. Having an afternoon siesta a few days a week seems to work for me now; perhaps I should move to Spain or something? I haven't had one of those killer headaches in a while, touch wood, and so long as I get a decent sleep at night and don't go out more than 4 or so nights in the week, I can keep them at bay.

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Active Minds Global Brainwave Entrainment Audios

 

Daily meditation has been a huge part of my recovery from Chronic Fatigue Syndrome. I find it difficult to stay focussed when I'm feeling overwhelmed with anxiety though, so I've amassed a huge collection of relaxation and guided visualisation audio tracks to help me with the process.

So I was quite receptive to the idea of trying a new relaxation approach when I was contacted a few weeks ago by one of the guys behind Active Minds Global, who say that their Brainwave Entrainment audio tracks can help recovery from Chronic Fatigue Syndrome. They sent me a copy of Tracks 1 and 2 from RevitaMind for evaluation: Mind Revitaliser and Neural Agility. I said I'd try them for 3 weeks and then blog about my experience.

It's just on 3 weeks now since I started using the RevitaMind audio tracks every day. In accordance with their suggested use, I listen to the Mind Revitaliser in bed every morning as soon as I wake up before going out for my morning exercise, and I listen to Neural Agility every night in bed just before going to sleep.

The tracks sound like a pulsing beat with white noise. It's fairly soothing, but they do recommend listening as loud as possible; so that's what I do. I can't say I notice much difference between the two consciously; but this stuff is all meant to work on the unconscious.

I start by just lying back and letting the sound wash over me, while imagining my nervous system being calmed by the soothing sounds. Next, I visualise myself stepping into an elevator on the tenth floor of Anxiety House. Then I imagine watching the old-fashioned floor indicator in the elevator move down slowly through the floors from 10, 9, 8, 7, 6... all the way down to the ground floor. As I do this, I take a long breath at each floor and notice my breathing getting slower and my body feeling calmer and more relaxed as the elevator descends.

When I step out onto the ground floor, I let my mind come up with whatever image it likes as I wander out of the elevator and into the scene. Sometimes it's a jungle, difficult to penetrate. Other times it's a beach with the ocean lapping gently against it. Occasionally it's a desert with the hot sun beating down. Wherever it is, it's a peaceful scene and there's no drama there. When my mind comes back to real world concerns, I just let the thought drift past and return to my elevator-accessible tropical island, or whatever it is today.

After a short while, I'd focus my attention on the amygdale region of my brain, and imagine it calming down, or cooling down. Changing colour from a hot red to a cool blue. Bathing in cool water, for instance.

The Active Mind guys say their audio tracks are designed to calm the sympathetic nervous system, so they seem to be on the same wavelength as I am regarding what causes and perpetuates CFS. After 3 weeks of using it consistently, I seem to feel calmer than I did before. I'm listening to a total of an hour a day, so this has pretty much replaced the meditation I used to do in the local bush near my place. Some afternoons when I feel really tired I'll go have a lie down and listen to another meditation track; I wanted to stick to the suggested schedule for at least 3 weeks and not mess with it too much.

For the first few nights, I noticed that I had trouble getting to sleep; my old friend insomnia was back. It hasn't visited me in quite a while since I started getting up early in the morning and going outside in the sun; so I wasn't entirely thrilled about this. Active Minds said it was normal though, and it did go away after about 4 or 5 nights. I don't have any trouble getting to sleep again now after 3 weeks.

Aside from the initial insomnia, it was pretty plain sailing. I'm mostly better now anyway, and while using RevitaMind I've continued my routine of daily exercise, getting out of the house to do things I love, and hanging out with people whenever I can. So it's a little hard to pin-point exactly how big an effect the audios are having. I would have liked to come across this sooner when I was more ill and the effect could potentially be more dramatic. Mind you, being too well to see a dramatic effect is a nice place to be, so I'm not complaining.

All in all, it seems to work and I'd recommend giving RevitaMind a try. Especially if you're not already doing at least an hour of meditation a day, or finding it hard to focus. You need to stick with it until it becomes a habit. It's no quick fix; but hopefully you've realised by now that there isn't one out there anyway. Given that it seems to be working, I'm going to keep using them morning and night for the time being. If you give it a go, leave me a comment to say how/if it works for you.

Disclaimer: Obviously if you've been paying attention you'll already know I was sent a free sample from RevitaMind for evaluation. They were pretty cool about it, suggesting I might like to blog about my experience. I found it helpful, so I did.

 

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Ice Skating and Skateboarding

Summer here in Sydney seems to be dragging on and on; which is fine with me, being a warm weather kind of guy. But now that the water at the beach is just a bit too cold for bodyboarding, I've taken up ice skating and skateboarding to get me through till next summer.

I go ice skating once a week for about an hour and a half. I used to ice skate when I was a teenager, so it's fun getting back into the swing again. It took a couple of weeks to really feel comfortable on the ice again, during which time I managed to take out a cute figure skater by running straight into the back of her, and crashed into the barriers quite inelegantly several  times. I notice the fine balance muscles in my feet are getting quite a workout as they regain strength. After a session I feel a little tired, but then feel really energized after a quick rest.

When I'm not doing that, I ride my skate board about 3 or 4 times a week. I'm still learning so this is a bit scary, but I really enjoy it. I notice that my balance is much better when I crouch down, and this also makes pushing a lot easier for riding up hills and along flats. When I start going too fast, I jump off and run out to a stop. This is definitely working my gluts out; I can feel the burn the next day. But it's a good burn. icon smile Ice Skating and Skateboarding

My band has a gig this Saturday night, so I'm also hitting the drums quite a bit. The music we play isn't really my cup of tea, so I tend to practise other songs than the ones we're going to perform. I think I need to get me a new band.

When I'm not ice skating, skate boarding or drumming, I'm playing tennis about 4 times per week. So life is pretty good; I'm probably about 80-90% recovered physically. In many respects I'm probably way fitter and exercise significantly more than most 45 year old guys.

Late afternoons are still challenging and I don't go out at night much, preferring to stay home and get to bed nice and early, around 10PM. My main symptoms now are a constant mild anxiety and tension in the head and teeth.

I've been exploring the Alexander Technique and noticing how much tension I habitually hold in my body, especially my neck and throat. I notice when I consciously relax my throat muscles while speaking, my voice is much deeper and more resonant. I suspect that's my natural voice, and my normal slightly whiny voice is the result of years of holding tension. I don't really expect the Alexander Technique to help with CFS, but I do think it'll be handy in my future career as an actor/comedian.

I'm planning a long road trip later in the year; it'll be the first holiday I've had in 6 years where I'll actually feel well enough to really enjoy it. I feel pretty burned out with my current health-focused lifestyle to be honest so I'm looking forward to the break, but I'm also very grateful that I'm not lying in bed feeling comatose much of the time now.

I hope you're on the road to recovery too. icon smile Ice Skating and Skateboarding

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I Will Not Be Running A Marathon When I Have Recovered

It seems that running a marathon is the gold standard when it comes to proof of recovery after Chronic Fatigue Syndrome. Well not for me. I will not be running a marathon any time soon, preferably ever. And certainly not by choice.

I'm currently staying at my sister's place in Canberra after completing another week-long emotional healing bootcamp and entrepreneur training course with Beyond Success. Yesterday I went out for some exercise and with my drumkit and bicycle back in Sydney and no willing tennis partners available, I decided to go out for a run. Thought it would be a great opportunity to explore some of the walkways that criss-cross through my nation's fine capital.

I don't normally go running as I find it mind-bogglingly boring; and I am attempting to avoid boredom as much as possible. After the novelty wore off, I thought "it is pretty boring, but it's definitely working out muscles in my legs that tennis and drumming does not".  I ran and walked for a couple of hours down paths that wandered about five kilometers through neighboring suburbs, around a water quality control lake and back home again.

When I got back home, I found that the keys to my sister's house weren't in my pocket. I was sure they were there when I left... but not any more. They must have fallen out along the way. I checked the car, I checked my room, I triple checked the empty pockets. Damn.

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Playing Tennis and Even Squash

Time for a fitness update: for the last couple of months I've been having tennis lessons and playing regularly during the week. This means I can play for a couple of hours at a time without feeling exhausted. In fact, I feel pretty good after a game. One of the guys from tennis even invited me to join him in a game of squash, so last weekend I played squash for about an hour and a half too. Against two guys about 15 years younger than me. Their game was more strategic than mine, meaning that I spent a lot of time running all over the court. One of the guys remarked that I "had more stamina than both of them combined". So all that morning exercise must really be helping.

I've also been going to the beach to go bodyboarding every day that I can, which tends to work out at about once a week. The weather is getting too cold now though, so I doubt I'll be doing much more bodyboarding for the forseeable future.

When I'm not out playing tennis or bodyboarding, I'm often playing my drums or going cycling. So yeah, I'm pretty goddam fit now. Probably more fit than the average 45 year old.

That's the good news. Of course there's bad news too though; well, no bad than before but just not a whole heap better. I still have a tense feeling in my head most of the time, and feel anxious a lot... to the point where it becomes debilitating.

I've noticed during exercise that I'll often suddenly feel kind of nauseous and start throwing up; but I'm not vomiting anything from my stomach. It's all coming from my head. And it's not like I've over-exerted myself when this happens; it seems to be just the movement of tension in my head and body that does it. The other day I felt really tense in my teeth, and found myself heaving while cleaning my teeth. Oddly enough I'd just had lunch yet nothing from my stomach came up. It's like the nausea I used to feel when I'd get really bad migraines way before I had CFS; after throwing up the tension releases and the pain would subside. Never heard anyone else talk about this before. I wonder if it's related to some kind of trauma release.

I wake up feeling pretty good these days; not as good as I feel in my dreams, but reasonably OK. Then at about 4pm it's crash time; for some reason I just feel wretched around then: very anxious and tense more than physically tired, but I almost always feel like I need to just go and lie down.

I recall Leigh Hatcher talking about this in his book I'm not crazy, I'm just a little unwell... which, in a freaky coincidence, I read purely out of interest about a year before falling ill myself. But while he put it down to his body running out of fuel, I reckon it's some sort of emotional/nervous/body rhythm thing. It seems to happen every day regardless of what I eat; but it doesn't tend to happen if I'm around people I like doing something I find very engaging. Or perhaps I just don't notice it then.

Yesterday it hit me particularly badly. I went to bed about 4pm and got up again feeling relatively OK around 7pm. Problem is, this really messes with my lifestyle. Perhaps I should just quit my whining given that I now have a relatively functional 12 hours of waking life each day, but last night I just lay on the couch watching TV thinking: "I'm fucked... I really am fucked".

Not to get too philosophical about it or anything... no bugger that, I think I will: look, we're all fucked anyway. Eventually we all die. Doesn't matter if you have CFS/ME/Rabies/Whatever-your-chosen-form-of-suffering. The Buddhists are right: all living things suffer. It's not meant to be a depressing realization but a compassion-inducing one. Everyone is struggling with something they wish would just hurry up and fuck the hell out of their lives. Mine just happens to be this, and I get all upset and annoyed when I think about the handbrake it puts on my potential future. So I try to live in the moment instead.

I promise to stop whining soon. My tennis coach has some weird physical and mental handicap like cerebral palsy or something, and he seems pretty happy. We're both big fans of Anchorman, so we walk around joking about our glass cases of emotion. I've never seen anyone serve the way he does, with his back arched all over the place. It's amazing he can get the damn thing over the net. He can sure hit the ball though!

I definitely suffer more when I dwell on how much I'm suffering. I don't suffer when I'm bodyboarding and some huge wave comes up to scare the bejesus out of me; I'm too busy trying not to drown. Or when I'm engrossed in thrashing some tennis partner. Or playing drums. But then, it's not even 2pm yet so I'm still in a relatively functional frame of mind. Ask me again in a few hours.

I'm also really bored shitless living where I'm living. I want to move closer to the beach for next summer. In order to do that, I'll need an income of some sort. Becoming a famous comedian is unlikely to happen given that I'm wiped out in the evening when gigs are on, and I've lost my sense of humour lately anyway. I might be able to get some acting work... and like that's not competitive or anything. There's always engineering to go back to if I'm starving, but solving technical problems doesn't grab me any more. Something is bound to come up... and if not, I'll just do the deep breathing thing. Anxious... argh!

I've been trying to do that gratitude thing lately too, where you think of all the good things you've got going for you instead of the bad shit that's going down. So I'm grateful for you reading this post, and even more grateful if you'd leave a comment so I don't feel so goddam lonely here blogging away by myself.

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Just Started Tennis Lessons

Hot on the heals of my recent insight into Mickel Therapy's hypothalamus theory, I've recently signed up for tennis lessons. I exercise every morning now, but up until now I have always done it alone which isn't likely to alleviate feelings of boredom and loneliness. So I decided to pick a social sport that I could do instead, and tennis seems like a good choice.

I used to play soccer when I was a kid, but I always ran myself into exhaustion. I played volleyball a few years before falling ill, but it's hard on the knees and I kept spraining thumbs which isn't what I want now that I'm a musician.

So I picked tennis, and found that a local community college runs lessons at 8am on Saturday morning which is perfect for having me up and exercising early in the morning. I'm still pretty limited in how many evenings I can spend out but for the most part I have a fairly normal life now and rarely feel like I need to spend a whole day in bed. Sundays are my rest day when I take it easy and don't consciously do any exercise. I figure even a healthy body needs time to regenerate.

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Maybe Mickel Therapy Isn't Complete Bullshit After All

I had a go at Mickel Therapy a couple of years ago, but gave up because:

  • I had difficulty identifying the onset of any particular symptom, which is key to the process. My symptoms remained pretty much constant, aside from an intense tiredness hitting in the afternoon. None of the actions I took every had an immediate impact on the symptom I was experiencing at the time, which left me feeling pretty hopeless about the process.
  • The primary emotion I was experiencing was anger, and Mickel Therapy didn't appear to have a tool for dealing with anger unless it arose in response to something. I felt angry pretty much all the time.
  • The one thing I could identify that triggered anger was my therapist using a facile analogy of sitting on a pin to describe why it was important to identify the trigger and deal with it. Of course if you're sitting on a pin, you don't just sit and meditate on the pain you're in... you pull out the fucking pin. But when you're sitting on a pin you know exactly where the problem lies so it's easy to identify the solution. CFS wasn't like that for me. My therapist trotted out this ridiculous analogy every time we talked, so my strategy for dealing with that emotion was to quit talking to him.

So I gave up. However, I did continue to implement the 3 assertiveness keys, and to look for ways to process emotions that came my way. In particular I remembered Fleur telling me that she realized by doing MT that she was basically bored. So I started riding my bicycle in the afternoons instead of going to bed, then going to an acting class right around the time I usually felt most tired. Or hanging out with a friend in the afternoon. Or going to the beach to go body boarding. Interestingly, when I did these things I didn't feel so tired; or at least I didn't notice it, and didn't spend time obsessing over it. I've also continued to do things I love, like playing music, and to plan more of them every day.

I've also been applying some of the principles I learned in the Gupta Program, like meditating every day and going for a walk in nature. I live near bushland, and spend at least an hour each day bushwalking, or just sitting and meditating. Over time, I've found my mind is much calmer now and I'm not so anxious. I also exercise first thing in the morning, something my naturopath put me onto in an effort to reduce my night-time cortisol levels so I could get some restorative sleep. My Mickel Therapist had suggested that I not do any other therapy at the same time, and I sort of ignored his advice as I was taking what seemed like the best advice from all over the place. Perhaps that wasn't such a good idea.

The other day I went cycling in the morning with another friend of mine who has recently done The Lightning Process, and found it significantly increased his energy levels. Along the way we stopped at a beach where I had a swim. I'm not a great swimmer as I've never been comfortable putting my face under water; even snorkeling causes me to panic over whether I'll be able to breathe. So I tried swimming "properly" with my face under the water for a few strokes; something that used to cause me great anxiety as a kid. After a minute or so of doing this in shallow water, I stood up and felt so disoriented, I couldn't walk straight. I felt nauseous for about the next hours, as if I'd been spun around until I felt sick. I thought I was going to throw up.

Now I can't explain this purely in terms of fight/flight/freeze response. Nor have I ever been fully comfortable with Gupta's explanation of the amygdala triggering flu-like symptoms. I just don't get how that could happen; it doesn't have that level of control. But the hypothalamus does; it's in control of just about everything. When I stuck my head under the water, my best guess is that an oversensitive amygdala triggered an oversensitive hypothalamus leading my body to go all out of wack.

So perhaps Gupta and Mickel are both right, and the amygdala and the hypothalamus are both overstimulated; but while lots of the therapy I've been doing has been amygdala focused (like dealing with past trauma), it probably came at the expense of retriggering the hypothalamus. It seems to me that since the physical symptoms are the most distressing, the most important thing is to calm down the hypothalamus; and let the amygdala calm down by itself. Or perhaps Mickel Therapy calms them both down by removing the emotional stimulus.

I'm off into speculation land now, but the main learning for me is to stop doing things that scare me, in my attempts to deal with anxiety by expanding my comfort zone. The one exception to this is stuff that contributes directly to my future career, since financial stress is one thing that contributes to anxiety. I also feel even more committed to finding things that I love to do, and doing more of them, so that my amygdala is only ever sending feel-good signals to the hypothalamus.

If everyone else in the world could just join me in this plan, perhaps we can have world peace without me having to win a beauty contest.

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Feeling Angry

I've been feeling really angry lately. I wake up with it, and it's like a default state that I fall back to when I'm not engaged in anything. I'm not consciously aware of being angry about anything in particular; of course I'm pissed off about the usual suspects like:

  • not feeling well for so long
  • not getting great emotional support from my family
  • my business not going gangbusters
  • not being able to go out at night and have fun

But it's not like I wake up thinking any of those things; I just wake up feeling tense in the head and cranky. At least it's better than feeling anxious though. Anger has a more empowering feel to it than anxiety, and I've been doing a lot of work over the last few years to learn to express my anger so perhaps the fruits of my labour are finally paying off.

Anger and anxiety are both generated in the same part of the brain; the amygdala. It's the area that Gupta's program attempts to "retrain" in the hope of curing CFS. I suspect there's more to it than that, and that the trauma goes deeper into the nervous system than just the amygdala. But it makes sense that if you suppress anger, it's going to come out as anxiety since the same brain structure generates both.

As I mentioned in another post, I've been practicing Peter Levine's Somatic Experiencing for over a year, and I still get shivers running through my nervous system which I hope are related to the shuddering he talks about when nervous energy is released. I suspect this is the same reason that Osho's Dynamic Meditation works: by triggering the release of pent-up nervous energy.

I first learned Dynamic Meditation when I did Path Of Love a few years ago. It's a form of meditation where you move your body in order to release nervous stress, so that the mind can settle more easily when you finally stop. As with any spiritual practice, the important point is to practice it. But I rarely do. Instead, I'd been relying on other people to create a space where I'd be motivated to do it, like doing Path Of Love again and going to burn meditations. It certainly is easier to do the practice in a group, but if I'm going to take responsibility for my own healing it doesn't make sense to rely on other people all the time.

Reading Osho's autobiography lately has inspired me; now I get what the guy was on about. There's a greater goal now than just recovery from CFS: Freedom. Enlightenment.

So I've started doing "Dynamic" each morning. I notice during the cathartic phase that I end up dry retching. Vomiting up nervous energy or anger. I had a similar experience when I first started my morning bike rides; part way along the ride I'd have to stop to throw up, even though I didn't feel nauseous. It was reminiscent of the migraines I used to get, which were overwhelmingly painful to the point where I would throw up; which felt absolutely ghastly, but always relieved the pain.

I'm hoping that doing the dynamic every morning will shift the anger that I'm feeling, and my sense of humour will return. There isn't too much to laugh at when I'm pissed off all the time, and I'm not all that interested in contributing to the world when I'm angry.

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My Personal "Graded Exercise" Program

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!

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My Cortisol levels are sky high

Hi folks. I haven't posted in a while, as I've been of focusing on what I need to do in order to get well. However, there has been a very significant development in my health: I visited a Naturopath in December 2012 who got me to do the salivary hormone test recommended in the Adrenal Fatigue book. My results came back mid-January this year, very elevated. My nighttime reading in particular is way too high: 27nmol/L, when it should be under 5.

I was elated to get these results; it's the first medical test I've had in 5 years that showed any abnormality at all. So I'm not crazy after all. I also don't have adrenal fatigue; what I have is constant stress on my body due to excessive cortisol. It's a bit chicken-and-egg, and not entirely clear what is causing it, but apparently if the nighttime reading doesn't drop low enough, my body doesn't enter sufficiently restful sleep to repair itself. Next day I wake up with elevated cortisol again, and the whole thing just repeats. No wonder I feel exhausted all the time. This is pretty consistent with what Gupta says, but now that I have lab test results to prove it, I'm more convinced than ever.

So the most important thing now is to get my nighttime cortisol levels down below 5nmol/L so my body can sleep properly. My nervous system should then start repairing. To help do this, I've changed my routine so I:

  • Get up at 6am every day.
  • Eat and exercise before 7am (within an hour of getting up).
  • Don't exercise after mid-day.
  • Start winding down at 9:30pm
  • Be in bed by 10pm every night

Apparently exercise raises your cortisol levels temporarily, but they peak half an hour or so after you stop, and then fall below where they would have been if you hadn't exercised. I had been exercising in the afternoon when I felt terrible, and even worse sometimes went dancing at night. So I was exercising at the wrong time of day.

Getting to sleep by 10pm is really important. It's not just how long you sleep; what hours you are asleep also makes a difference. I had read this before, but wasn't doing it religiously. I don't go out in the evenings now, unless it's to something low-energy that's directly related to reducing my stress levels. My social life is restricted to daytime for the time being, which gets pretty lonely. I do a free acting class on Tuesdays during the day run by Milk Crate Theatre, because it's really fun. We laugh a lot. Hanging out with homeless people is funnier than I would have expected.

My night time wind-down ritual involves turning the TV off early, lighting some candles, putting on some lavender aromatherapy oil in my burner, and playing relaxation music while lying on the lounge.

I'm also doing a massage course, which is good for calming the nervous system. I get together with other students to practise, so I'm getting lots of massages while also overcoming my fear of physical touch with strangers and learning a handy skill at the same time.

I was already on a low-sugar diet, so I'm still doing that. The Naturopath said that fruit was OK, and pointed out that some of the breakfast cereals I was eating had sugar in them. I'm avoiding them now.

I'm currently taking these supplements, which are intended to calm the adrenal glad, lower cortisol levels, and heal the nervous system:

  • An adrenal-calming herbal tonic twice a day. I haven't asked what herbs are in it, but beware that some herbal medicines stimulate the adrenals, which isn't what you want.
  • Vitamin C: 2000 mg (I take Blackmores BIO C)
  • Vitamin B12: 1000 mcg
  • Folic Acid: 500 mcg (No, I'm not pregnant)
  • Fish Oil: >800 EPA (I take Nature's Own Liquid Fish Oil, which is easier to swallow than 3 high-potency capsules you'd need for the EPA dosage)
  • A multivitamin, just for the hell of it

The Naturopath also measured my breathing, and found that it was shallow and had too low a level of CO2. High CO2 level have a calming effect on the nervous system apparently. So now I do breathing exercises where I take a long slow in breath, and an even longer slow out breath. The idea is to slow the out breath down as far as possible. "It should feel as if you just want to gasp for air", she said.

I've also been doing a regular meditation every day. After trying hundreds, I've settled on chanting the Oneness Chakra Meditation recorded by Ananda Giri because it's the most calming I've tried.

Can't say I've seen miraculous results yet, but it's early days. I was on the right track before seeing the Naturopath, but there were a few things I was doing that weren't helping me; like exercising too late in the day. The cool thing about having the cortisol test results is that I can do the test again in a few months to see if what I'm doing is having an effect on reducing the levels; even if I don't feel radically better yet. I like at least having a metric that shows I'm heading in the right direction.

I was influenced to visit the Naturopath by Daniel Neuffer's book CFS Unravelled, which recommends finding a health practitioner who is on top of this stuff. It's hard to do it on your own. I spoke to Daniel via Skype (by a freak coincidence, he went to my high school) and he seems to genuinely want to help other CFS sufferers now that he's recovered. His description of the mechanics behind CFS is the best I've come across; assuming he's right. If so, I should be all better within a few months. I recommend Daniel's book, with the reservation that following his advice hasn't healed me... yet. It will be free on Amazon next week, since he really wants to get the word out.

I also recently came across another recovering CFS sufferer named Marissa Hakansson who saw her experience of CFS as a spiritual journey, and now teaches stress-reduction techniques to other people suffering from CFS. She specializes in helping women but I still found it really helpful talking to her; like Daniel's book, it helped confirm that I was on the right path. I recommend contacting her if you're stressed out and need someone to talk to who understands where you're coming from.

I have a lot more free time now I get up so early in the morning. I'm spending it writing comedy on my home blog, in the hope of pursuing the dream of being a comedian when I've recovered. That probably won't be until next year, since getting up on stage causes a huge adrenaline/cortisol rush; which definitely isn't what I need right now. I can see now why getting up on stage and doing Improv caused me to have a meltdown. Oops.

When I'm not doing that, I'm playing my drums (but only in the mornings) or guitar. Or watching Woody Allen movies or other comedies to make me laugh. Occasionally I'll meet up with a friend during the day. That pretty much fills up the time while I recover.

I still feel more anxious than I would like more of the time than I would like. I can see that some of the personal development courses I've done over the past few years in an attempt to address this haven't been such a great idea in hindsight, given that I really had to push my body in order to get to them. I decided last night that I have power over my thoughts, and that thought makes me feel less anxious. I find this easier than doing the Stop-Stop-Stop technique that Gupta recommends, which is exhausting when the scary thoughts are coming thick and fast. Much of my anxiety is around thoughts like "This won't work! I'll never get better! I'm missing out! It's taking too long!" I'll just have to stick at it and see.

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