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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Graham Stoney

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

2 Comments

James Trickett · April 29, 2014 at 7:02 AM

hi Graham

I enjoy reading your posts mate, and am really glad you are making such good progress.
I thought I was cured about 2 years ago and remember skyping you to tell you about it and hopefully help you, but it was 1am your time – no good for a chat!

anyway it turns out I’m not cured, the Lightning Process I learned just made me feel so much better than I was, that I thought I was haha. then when it came to getting a job I realized how f***ed I still was mentally and physically!

I too get mad anxiety and jaw tension is a big issue for me, much of it related with trying to get back into paid work. I’ve recently realized I wasnt making enough headway against it with EFT and hypnotherapy etc and so finally stuck myself on anti depressants and boy I wish I’d done that when I first got ill.

I also hoped that the M.E would disappear with the loss of mad stress but alas it’s still there. which is kinda good in that it means it’s not all in my mind.

So I’m just trying to keep a level of sanity, rest up, eat well, and stop pushing myself better – which I realize is what I’ve been doing for a long time.

Damn it’s a hard balance tho isnt it?!

can you write a comedy script for radio maybe instead of doing late night gigs?
just a thought, that’s what I’m doing tho it is taking it’s sweet time with all the energy fluctuations and hours I lose to volunteering trying to get work sharp. Life sure is a trip eh mate. best wishes, James

    Graham · April 29, 2014 at 8:49 AM

    Hey James. Thanks heaps for the update. I feel heaps better, but still not right. Another woman who reached out to me to tell me that Mickel Therapy had cured her CFS recently did the Lightning Process, and I thought “If Mickel cured you, why do you need Lightning?”. Seems like thinking we’re cured prematurely is part of the deal. Now when someone suggests a miracle treatment that has cured (or is about to cure) them, I say “get back to me in six months” before considering it. It just seems to take time even when doing all the right things.

    I really appreciate you mentioning the tension in the jaw; you’re the first person I’ve met who’s said they had that too. A therapist I’ve been seeing said “people tend to hold anger in the jaw”, which makes sense to me as I’ve had real issues expressing anger until recently. Another theory is that it could be connected with the years of pain I endured when I had braces, which I also sucked down at the time.

    The good news is that I had a truly awesome heartfelt conversation with my sister yesterday about patterns of trauma and dysfunction which run in our family; something I’ve been aware of for many years, but it was nice to hear her insights into it. She believes our mother suffered from PTSD during my sister’s traumatic birth and never got it treated, which explains her lack of empathic attachment to her children. I suspect that CFS is really PTSD by another name so for the time being that’s how I’m treating it.

    Thanks for the suggestion about comedy writing; I’ll think about that when my sense of humour comes back. Happy to Skype any time… well, not after say 11pm!

    Cheers, Graham

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