I woke up this morning feeling anxious… again! Fuck I hate that. Fortunately I’m physically well enough now that long, anxious days in bed aren’t the only option any more. I still feel like I have a mild cold, and more anxiety than I can poke a stick at.

Sometimes I can pinpoint a reason for the angst, and sometimes it’s just a tense feeling floating in my head and jaw. Doing something physical either relieves it, or distracts me enough that it’s not so bothersome. I got up, called a friend and played some drums.

So that’s where I’m at right now.

I just got a question via email about what has helped me most in my recovery, so I thought I’d answer that here for all to enjoy. In rough order starting with the most significant:

  • Choosing to stop pressuring myself all the time
  • Putting my feelings and my well-being first
  • Giving up trying to please other people all the time
  • Taking up physical hobbies that feel good: playing drums and bodyboarding
  • Learning to identify when I’m bored or angry
  • Learning to express, rather than repress, my anger when I am triggered
  • Moving to live walking distance from the beach
  • Increasing my social contact with other people, especially when I’m upset
  • Turning my attention from getting well myself to [intlink id=”710″ type=”post”]helping other people get well[/intlink]
  • Giving up catastrophising
  • Learning to play music
  • Learning to be grateful for what is working, rather than angry about what isn’t
  • Learning to avoid emotionally triggering situations
  • Assertively setting boundaries and unfriending people who violate them
  • Expressing my feelings honestly to people I trust and feel emotionally safe with
  • Shitloads of emotionally-centred psychotherapy
  • Studying Nonviolent Communication
  • Talking with other people who see CFS as a journey of self-discovery
  • Re-engaging with life generally
  • Learning to laugh at myself and see all of life as a fun game

All of these are an ongoing work-in-progress. No sooner do I write “Giving up catastrophising”, than I’m thinking “It’s never going to end!!!”

“It gets better”, the guy at chai night said. “This too shall pass”.

Of course I’ve also done Tai Chi, Qi Gong, Meditation, Yoga, chanting, dynamic meditation, biodynamic shaking meditation, dancing, etc etc. I’m sure it’s all helped, but to be honest many spiritual practices are pretty boring, and I suspect boredom is a big part of CFS for me. My body experiences it as anger, which just adds to all that repressed rage that made me sick in the first place.

I played drums last week to two groups of physically and intellectually disabled people, and was really struck by the fact that their bodies and minds are never likely to recover anywhere near where I am right now. Yet they still live, they smile sometimes, and our music made them happy. Some of them danced. Others were in wheelchairs and will probably never have the opportunity. I feel sad for them, and grateful for what I can do.

Also I was down at the beach yesterday learning to use my new body-boarding flippers. I always feel awkward and self-conscious waddling down into the water with Donald Duck sized feet. Then I notice another guy come down to the beach with a body board bag. A few minutes later, he is waddling past me awkwardly in his flippers looking rather uncoordinated, and I wonder if he feels self-conscious too. Then I look over at his stuff and notice two prosthetic lower legs. The guy has no feet. Yet here he is jumping into the ocean on his body board; and when he hits it, his flippers start working like a propellor. I wonder how he manages to do that.

And that reminds me of the woman I met at a stand-up comedy workshop last year who said “I had to put my comedy career on hold for a while when I got cancer. All that chemo really knocks you around.”

Fuck me. Kind of puts everything in perspective.

So I wake up every day feeling anxious, sniffly and run down. Aside from that, I’m living the dream. I’m not the only person out there facing some big challenges.

We are not alone.

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Categories: CFS/ME

Graham Stoney

I'm a guy in his early 50's, recovering from Chronic Fatigue Syndrome and Severe Obstructive Sleep Apnea.

3 Comments

ashlene · September 29, 2015 at 6:35 AM

Hi all i was taking a b complex in 2013 for month when i devolped b6 toxicty u had all the systoms burning sensations tingling weakness etc.I stoped and the systoms slowly started to subside but then i started to get systoms of cfs ear pain fatuige flu like systoms after exersise.It been 2 half years now i have improved but im not recovered if anyone would have aby advise for me feel free to comment.

Judith Coyle · September 23, 2015 at 8:46 AM

Think I’m going to jot these ways to health pointers down.
Sorry about all the commenting but your blog is really chiming with where I’m at right now! It’s all good!

    Graham · September 25, 2015 at 2:48 PM

    Hey Judith. Sure; by all means keep commenting. I’m really glad it’s resonating with you. Connecting with other people is what keeps me motivated to keep posting! Cheers, Graham

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