I wrote a song that expresses how I feel about the whole CFS experience. It came to me in a Yoga class at the beginning of this year. I even made a music video for it. I hope you enjoy it:
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.
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.
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.
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.
I was recently invited to create a video to share as part of the Community Of Hope for Recovery from CFS/ME/FM Facebook Group’s 12 Days Of Christmas event. It has a few key tips that I’m finding helpful in my recovery, and includes a special surprise gift at the end!
I thought you might enjoy it too, so here it is:
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Music is a big part of my life nowadays. Shortly after I fell ill, I decided to start learning to play guitar. I thought it would be a great way to connect with healthy people without taking up too much energy, and it was. Rather than sitting around complaining about how I felt, I spent a lot of time learning the hand shapes, getting the hang of strumming and hanging out with other musically minded people.
It turned out that I had quite a bit of spare time available to practise while recovering. I also learned to play drums, and now I do volunteer work for a charity that provides music and yoga to disadvantaged people. Playing music with people whose lives are more challenging than mine reminds me to be grateful for the health I have.
So here are my Top Ten Songs for CFS:
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Unfortunately the article mentioned below is no longer available, but check out this one with neuroscientist Dr. Michael Van ElZakker linking Chronic Fatigue with Vagus Nerve Infection, which covers similar territory. One of my clients recently put me onto Stephen Porges’ Polyvagel theory, which suggests that a lot of our mental, emotional and Read more…
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 Read more…