My experience recovering from Chronic Fatigue Syndrome (CFS/ME) and Obstructive Sleep Apnea (OSA)

My Favourite Qi Gong Routines For Recovering From Chronic Fatigue Syndrome

For the past few months I’ve been practising Qi Gong (almost) every morning that I don’t have college. I find the gentle meditative movement helpful and appreciate the light exercise it offers. I recently saw a Facebook post where Ashok recommended it as a good adjunct to The Gupta Programme too.

I generally get up just before sunrise every day and practise down near the beach which has helped shift my sleep pattern to match the sun more closely. I’ve also been switching off lights earlier and avoiding late night TV so that I can fall asleep before 10 PM most nights. I tried a couple of times doing Qi Gong in the evening, but even with Lee Holden’s evening routine I found it hard to sleep afterwards, so I find it better done in the morning.

I find Qi Gong easier to practise than it’s brother Tai Chi, as the movement sequences are simpler. I took a Tai Chi class a couple of years ago, but the routine was long and complex and we only covered a portion of it. I tried learning Tai Chi from YouTube videos, but again it’s tricky to master.

With Qi Gong it’s easier to follow along to a YouTube video. I bought a pair of Sony Wireless Bluetooth headphones so that I can put my iPhone on the ground a couple of metres in front of me and still hear the commentary. One of the reasons I like the videos below is because of the soothing, reassuring commentaries they have.

I have often found strong emotions arising during or just after practising Qi Gong, so remember to take care of your inner child when doing this. Witness the emotions arise and let them go. If they’re particularly strong and/or persistent, find someone to talk the feelings over with.

There are heaps of Qi Gong tutorial videos on YouTube, and you can start with shorter ones and work your way up to longer routines as you feel able. There’s plenty of variety so you don’t ever get bored with the same old routine every day. Get ready to meet your new YouTube friends Lee, Jeff and Marissa!

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By Graham Stoney, ago

What I’m Up To These Days: Music & Comedy

A few years ago when I was still struggling to get out of bed, I decided that once I recovered from CFS I would become a comedian. I was experiencing constant misery and wanted to create as much joy in the future as I could. I had no idea how I was going to do stand-up comedy when I was having trouble just standing up, but it gave me a goal to work towards that would hopefully improve my health but wasn’t illness-related.

I realised that social isolation was compounding my anxiety and possibly perpetuating my illness, so I looked around for some kind of course I could do that would get me out of the house and connect me to other creative people who weren’t physically ill. I did a stand-up comedy course a couple of years ago but it only lasted a few weeks so it didn’t do much for my social isolation. I wasn’t well enough at the time to do regular comedy gigs which are normally in the evening, so I looked for something else to focus on.

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By Graham Stoney, ago

CFS Unravelled (2nd Edition) by Dan Neuffer

I first met Dan Neuffer, the author of CFS Unravelled, when he contacted me through this blog back in 2013. He told me at the time that he had made a full recovery from CFS by treating what he saw as the underlying cause of CFS: a dysfunction of the Autonomic Nervous System (ANS).

When he first contacted me he had just published the first edition of his book on Amazon Kindle and set up the cfsunravelled website to offer hope and support to help other people recover more quickly. He was a man on a mission to spread the word, freely spending hours of his own time talking to suffering people all around the world, and was clearly a very genuine guy.

At the time I was dealing with a lot of anxiety and I remember Dan asking me:

“If you knew that you would soon make a full recovery, would you still be feeling so anxious?”

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By Graham Stoney, ago

What Would I Recommend?

Just got this question via E-mail from a woman who has had ME since 1986 and thought I’d share my answer with you all:

Knowing how hard it is to be disciplined when one is exhausted, would you recommend Gupta, Dynamic NRS or something else?

My short answer is to focus your energy on getting the life that you want, rather than on recovery from ME per-se. That said: (more…)

By Graham Stoney, ago

Using Music To Express Anger and Rage

Since the beginning of the year I’ve been studying Music Performance at a local tertiary college, and the experience has made me more convinced than ever that social isolation and repressed anger are, at the very least, perpetuating factors in Chronic Fatigue Syndrome.

Dragging myself to college every day when I don’t feel great has been a challenge, and it’s been a constant balancing act between participating in class when I have the energy and resting when I need a recharge. The interactions with other students have also brought a lot of my unresolved adolescent insecurities to the surface: in some ways, going to college is like going back to high school. My fears about whether I would fit in brought up a lot of anxiety for me, coupled with a very strong desire to try hard to make other students like me. I often had to take a deep breath and remind myself to focus on what I was learning and just have fun participating instead.

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By Graham Stoney, ago

Headaches: Overdoing It, Anger/Anxiety and Adrenaline Withdrawl

One of my most distressing symptoms of CFS for me is the tension headache that never really goes away. Another friend recovering from CFS recently mentioned her similar headache, and since I’ve got one right now and I’m in a bad mood, I feel like complaining a bit about it.

Back when I was a computer engineer, I used to get regular migraine-intensity headaches about once a month or so. I would spend hours every day engrossed in a computer screen and often felt a headache coming on in the afternoon. I was so obsessed with my work that I would just push through until the pain was so debilitating that I would need strong painkillers with codeine just to get through the day. Once I got to sleep I would be OK the next day, but if the pain was too intense to get to sleep, it would often escalate until the pain was so excruciating that I would be nauseous and vomit. Vomiting with a migraine was a horrible experience but would usually give me some relief, and then eventually I’d fall asleep.

The next day, I’d feel really groggy but the pain would mostly be gone and I’d be back to work. The day after that it felt like nothing had happened and I’d be back to go go go mode. Then a few weeks later I’d do it all again.

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By Graham Stoney, ago

Reality Check For Compulsive Care-givers & People-pleasers

I recently came across a fascinating talk on YouTube by Dr Gabor Mate, a physician with a background in palliative care who wrote the book When The Body Says No: Understanding the Stress-Disease Connection. His talk covers the link between compulsive care-giving/people-pleasing behavior, and physical illness.

I really relate to what he says. I used to have a successful Engineering career from which I burned out several years before I came down with CFS. I too was a compulsive care-giver and people-pleaser.

While working as an engineer I was heavily involved at my local church and did volunteer work on a 24 hour telephone crisis line. I enjoyed the feeling of helping people in crisis, but I can see now looking back that I was in a constant state of stress. I often did late night shifts at the crisis centre with a migraine, doped up on codeine-based pain-killers and desperate for the shift to end so I could go home to bed before yet another suicidal caller rang. Meanwhile my relationship with my girlfriend of the time was slowly falling apart, I was losing interest in the career I used to love, and my faith in the religion I was brought up with was going down the toilet.

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By Graham Stoney, ago

My Anxious Brain

I’ve just finished reading Joseph LeDoux’s most recent (2015) book Anxious: The Modern Mind in the Age of Anxiety, in an attempt to get a better handle on why I feel so anxious as I recover from CFS, and what I might be able to do about it.

LeDoux is the neuroscientist whose earlier work inspired Ashok Gupta’s amygdala hypothesis for CFS. Another fun fact about him is that he plays music in a band called The Amygdaloids. I’ve noticed that a lot of highly intelligent and creative people love playing music, even if it’s not their main gig in life. My guess is that it exercises the emotional side of the brain that often gets neglected in our overly analytical western society. Writing books about how emotions work in the brain isn’t the same as actually feeling something.

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By Graham Stoney, ago