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.
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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It’s been quite a while since I last posted here, as my continued recovery means I have more time and energy to engage in the life that I want, and less desire to talk about how hard recovering from CFS can be. But I get occasional emails from people who have been following this blog asking how I’m doing, so I thought it was time for an update.
My physical symptoms now resemble a fairly mild cold, and the occasional cough. I no longer push myself into stressful situations that make the cough worse, so it doesn’t bug me so much. I still feel a weird sort of tiredness with a background sense of anxiety that varies from mild to moderate. It’s kind of like the tiredness and the anxiety are playing some kind of dance. It might feel like I need a lie down, but going for a leisurely walk along the beach can work just as well. Other times, I really need the lie down and so I take it.
The other weird symptom I have is a tense feeling in my head, which moves around. Right now it’s in my upper jaw and temples. It’s not exactly painful; sometimes it’s just unpleasant, and other times I can be so engrossed in something I’m doing that I don’t notice it. Perhaps it’s boredom and truly disappears when I’m thoughtfully and physically engaged in some task. It seems to get stronger when I’m feeling angry, and turns into a debilitating headache when I’ve been overdoing things… which I take pains now not to do.
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.
It’s been a while between updates, and I’ve been off doing every course I can find to let go of emotional baggage. Sometimes I wonder if it will ever end; I seem to have a deep wound at my emotional core that I can’t quite get to the bottom of, Read more…
I’m pretty sure I have a cold. A real cold, not just a flu-like-symptoms-that-never-go-away cold. I suspect I’ll feel better in a couple of days. In the meantime, Tim Minchin makes me laugh: Enjoy!
The last time a felt really well was back in March 2008, over two years ago. Ever since then, I’ve had these damn cold/flu-like symptoms. But about a year before that, I had similar symptoms for about 4 months. At the time, my psychologist suggested I join a local gym Read more…
Well I had a really interesting weekend at a Toastmasters district conference here in Sydney. I was particularly inspired by two world champions of public speaking who attended, and it reignited my enthusiasm for the whole public speaking thing. One of the places I feel in my element is in Read more…
This is an edited excerpt from an email I sent to a reader asking whether the treatment in the Gupta program worked. After trying a bunch of other treatments and listening to crackpot theories from many quarters, I’m convinced that Ashok Gupta has hit the nail on the head with Read more…