Chronic Fatigue Survivor's Blog

Interesting program on local Sydney ABC radio this evening about Chronic Fatigue Syndrome. One of the guests was former sufferer Leigh Hatcher. I didn’t learn a whole lot I didn’t previously know, but I wasn’t aware of Leigh’s CFS website, nor his forum for CFS sufferers.

In a bizarre quirk of fate, I listened to the audio version of Leigh’s book I’m Not Crazy I’m Just a Little Unwell while working out at the gym about 6 months before I succumbed to the illness. I had no particular interest in CFS at the time and felt absolutely fine myself, but there was a limited range of audio books available to borrow at my local library and I thought his story sounded interesting.

I now know way, way more about CFS than I ever wanted, and although I don’t spend much time learning more about the condition nowadays, it was interesting to hear the discussion on the radio. The doctor they interviewed talked quite a bit about immune system problems and food intolerances. I never noticed any change in my condition based on changes in my diet personally, but I guess it works for some people. The only thing that seems to work for me is resting and dealing with the emotional issues the illness (and life in general) throws up.

I seem to have the flu at the moment. It’s like my normal symptoms only a bit worse, but I can tell it’s different because the phlegm from my nose is chunky and browny-yellow, instead of the usual clear goop. And when I blow my nose, I’m blowing out blood. I guess I should have put a gross-out spoiler warning on this paragraph eh.

I figure when my flu goes I’ll be back to 60% or so, which is enough to pursue my writing/speaking career. To that end I’ve been spending a lot of time rebuilding my home website. I find if I’m doing something productive while I’m feeling ill, it’s a nice distraction and I get to move forward in life a bit. This is a bit of a change from my previous strategy of just resting passively while waiting to recover.

I’m also preparing for my Toastmasters club’s humorous speech contest on Wednesday night. Wish me luck!

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!

I just got back this evening from my retreat in the Hunter Valley. I stayed at the Youth Hostel for 3 nights while I did a bit of structural editing on the book I’ve been working on for several years.

Then I went to Path Of Love. Wow… what an amazing experience. Lots of catharsis and emotional healing work in such a short space of time. It was very different to the Vipassana Meditation Retreat I did earlier this year; I’ll write a more complete article about it once I’ve had more time for it to really integrate.

After that, I went back to the Youth Hostel for a couple of nights. Glad I did too, because I was way too tired to drive back home straight after Path Of Love… it was exhausting emotionally, physically, and probably spiritually too! The hostel was buzzing with about 20 women from a hen’s weekend, who’d taken over the kitchen and therefore decided it was easier to feed me than to get out of my way. Bring on the love I say!

This afternoon I went to a Toastmasters seminar, and practised the speech I want to use in the upcoming humorous speech competition. It’s good to see it finally coming together, on the third attempt.

I’m back to Acting class tomorrow, and working on rebuilding my blog to start building a list to market my book to. All very exciting, and a bit scary. Great Expectations.

Before I came down with chronic fatigue over 2 years ago, I was busy writing a book on emotional healing. I put it aside when I become ill, since being sick all the time kinda fucked up the ending that I had in mind for the story. The ending was supposed to be about how I achieved self-acceptance, freedom and happiness. I’d even written the final chapter on self-acceptance in advance, predicting where I wanted to be by the time the book was ready to publish. Becoming ill seemed to put the kibosh on that plan, since I had a lot of trouble accepting the limitations that sickness put on me. Urgh; I even hate the word “sick”.

Since finishing (or giving up on, depending on how you look at it) the Gupta program at the end of June, I’ve decided to go back and complete my masterpiece on emotional healing. When I tell people about my story, they’re always drawn in and find it fascinating and inspiring. “Wow, that’s really interesting” they tell me. People can relate; especially the kind of follow-your-dream people I tend to hang around with nowadays.

So I’m heading up to the Hunter Valley tomorrow to spend a few days at the beautiful youth hostel there reading what I’ve written so far, and drafting a plan to finally finish the beast. I will be adding a chapter on my experience of chronic fatigue, and all the emotional stuff it dredged up for me. I think one day I’ll be able to look back and be grateful for the extra material it gave me to help make the book a more compelling best-seller. That’s the big dream, which will make all the hours spent in bed and feeling dreadful worthwhile.

Going back to following my dream of being a successful writer also means fixing my home website and going back to blogging there to build an audience who are interested in what I have to say. So I’ve spent the last few days working on a new WordPress-based website (like this one) to replace the Joomla!-based site I’ve currently got. Joomla! seemed like a good choice when I first started working on my home site, but I now realise that WordPress can do everything I need a lot more easily. And it’s actually fun to use; whereas I find Joomla! frustrating. I’ll write an article about that one day…

After my mini writer’s retreat in the Hunter, I’m heading off to an emotional healing retreat called Path Of Love. I expect it to be intense, cathartic, and liberating. I don’t expect it to be “the answer” I’ve been searching for to physical and emotional health, because I no longer think there is just one answer. I used to be running around like a headless chook searching for the big solution I so desperately wanted; now I realise that this search itself is stressful. The solution is in ourselves; we just need other people’s help to see it sometimes.

I’m really excited about where I’m heading in life again. That means my insomnia is worse, but that’s OK so long as I’m not getting headaches due to sleep deprivation. Being a writer means I can sit up late at night productively instead of tossing and turning in bed, and my uber-flexible schedule still allows for whole days in bed if and when I need them. I haven’t been coughing so much lately, and although I still feel a bit zonked much of the time, I don’t feel so desperate about it. I’m having more good days than bad ones, and I’ve learned a lot. I recently lent my Gupta program materials to a mother and daughter who suffer from CFS, and we had an awesome chat about the impact of emotional stress. That reminds me that I’m on the right path, and that my book has a massive audience awaiting me… which I find really exciting. So life is good!

I’ve found The Sedona Method of “letting go” helpful in dealing with my stress and anxiety about feeling ill for so long. I use it on and off on a daily basis, especially when I feel myself getting anxious about things not being the way that I want them to be. What we resist persists, and I definitely maximise my suffering when I focus on how things aren’t the way I’d like them to be. Resisting causes stress, and stress compromises our immune system. So whether CFS turns out to be purely stress-related or due to some infectious agent or immune system problem, dealing with the stress and emotional stuff that illness brings up is bound to help.

Check out this video from the author of The Sedona Method talking about how we aren’t our diagnosis:

I’m currently in Brisbane visiting my father’s family, motivated by my aunty’s 80th Birthday. Technically, it’s six months now since I began the Gupta Amygdala Retraining programme for Chronic Fatigue Syndrome. So I think it’s time for a review.

I say “technically”, because I only really stuck to the programme for the first four of those six months. After that, I pretty much stopped doing the physical Stop-Stop-Stop business; although I kept doing it in my head every now and then. The other thing I had difficulty with doing was taking six months off life to just recover.

After about a month on the programme, a friend of mine with CFS recommended an acting course that he had found tremendously helpful in unlocking the emotional repression that he believed was at the core of his Chronic Fatigue. His background story was so similar to mine, and the course sounded so amazing, that I just didn’t want to wait until I’d done six months on the Gupta program before starting the classes.

Starting acting classes took all my remaining energy… and then some. I also had a couple of other stressors at the time: I was president of a Toastmasters club (what was I thinking?) where I learned to delegate primarily because I was too ill to actually do anything myself. And I was still attempting to unsuccessfully promote my first book. Which, by the way, is getting rave reviews… but few actual sales! I found the emotional rollercoaster of pushing something unsuccessfully really harsh, so I’ve pretty much sidelined it… at least for the time being.

After a few months on Gupta’s programme, I became pretty skeptical of his Amygdala Hypothesis, and particularly of the ability of the NLP business to break the stress response. I’m currently reading The Emotional Brain, by Joseph Ledoux; the neuroscientist whose work Ashok Gupta based his programme on. It’s a fascinating read, very relevant  to what I want to talk about in my public speaking. I grew up in a family where emotions are so strongly suppressed that they’re pretty much taboo, and this has had a tremendously damaging effect on my psyche. So to read this book about the emotional mechanisms hard-wired into my brain is very validating. Ledoux’s key research interest is the emotion of fear specifically, so it talks a lot about the amygdala and the physiological stress response.

I can see how the stress response could become a learned conditioned response, and how the Stop-Stop-Stop technique is intended to break the association. But it’s a bit of a stretch to jump from Ledoux’s research to Gupta’s theory; I’m not sure if Ledoux would go along with it. I’d been under chronic emotional stress for some time before succumbing to CFS, but even if the stress response does become active constantly, I can’t see how this alone can produce flu-like symptoms. It would surely play havoc with my immune system though, and that could allow for a persistent infection.

My main complaint with the Gupta programme is that it’s just so goddam boring. All that Stop-Stop-Stop and meditation; frankly, I’d rather be out living my life. But then it’s really CFS that’s boring rather than the recovery programme. I seem to have fewer days stuck in bed now than I did when I started the programme, and I don’t feel overwhelmed with anxiety so much. I’m functioning well enough that I think the distraction of getting back to what I actually want to do with my life is more productive than walking around saying “Stop Stop Stop!”. Whether it’s Gupta that got me there, or the acting class, or the vitamins, or the rest, or the non-aerobic exercise, or just the sheer passage of time, or some combination of the above… I’m really not sure. I remember a few months ago I was deeply fearful of being ill indefinitely; now I’m not so worried about that. I just feel like I have a mild cold, and a bit zoned out. But that’s quite liveable, so if it never went away, I’d cope.

I’m basically backing off on Gupta now. I’m going to spend less time watching the DVD’s, reading the forums, and probably less posting to this blog. My plan was to spend 6 months recovering, and this blog’s purpose was to reach out to other sufferers seeking support to stay motivated. It mostly worked, and the 6 months is now over.

Chronic Fatigue has felt like a huge distraction for me from what I actually want to be doing with my life. It’s been like driving with the handbrake on; but the brakes have slowly been coming off lately, and now I’m keen to move forward. However, it has forced me to focus more because I could no longer do all the fun stuff I used to enjoy and had to come up with something else. I have enough energy to practise my public speaking, get to an acting class or two a week, plus some practise sessions; and get back to that autobiographical book that I put on hold when I became ill. The book is meant to be inspiring, and I couldn’t see how I could be inspiring when I was stuck in bed most of the time so I put it on hold for two years, but now I’d rather like to finish it.

Focusing on my future gives me less time to focus on feeling ill. And I don’t feel so ill now anyway… I’m hoping the trend continues. If there’s one thing Gupta got right, it’s that the psychological and emotional effects of Chronic Fatigue are enormous. They’re the thing that actually causes the suffering, and we need to pay more attention to these emotional aspects. Getting emotional support from people has been absolutely crucial for me. Sadly my emotional-brick-wall family don’t qualify, but that’s just more material for what I want to speak about down the track.

I’m considering writing a book about my experience with Chronic Fatigue. There was quite a bit of drama in the first 2 years before this blog started, and I think the story itself would help inspire other sufferers. If you think you’d buy a copy at say $10, drop me a comment and I’m sure I’ll be more motivated to put the time into writing it.

My plan now is to rebuild my home page on WordPress, and start blogging there on a more regular basis. CFS and this blog has helped me learn how to do that better. It’s an ill wind that brings no good, as they say. Then I want to get out to more speaking venues, develop a keynote speech, and get this public speaking career thing happening. Having a plan for the future definitely makes me feel more positive, and less anxious. Anxiety is one of the things I want to speak about, so perhaps CFS has taught me a valuable lesson in there somewhere that I can use.

Meanwhile, let me know how y’all are doing!

Hey folks. I have no idea if online petitions work or not, but here’s one to improve funding for CFS research. Give it a sign, and who knows… someone may end up finding a cure.

I had a spectacularly awful day yesterday. Not only did Australia get kicked out of the world cup, but I felt headachey and awful all day. Spent most of it in bed, either asleep or attempting to sleep. Life just didn’t feel worth living yesterday, and yet I couldn’t work out any strategy for escaping it that wouldn’t cause tremendous pain for my friends and family. The best I could come up with was to exile myself somewhere until everyone had forgotten that I existed, then just kill myself. Even that wouldn’t work though, and god I’d be lonely in the meantime. And there’s a small matter of things that I’d like to achieve before I go.

Fortunately today I feel marginally better. I generally do after spending a day in bed. I feel kind of washed out, like I used to feel the day after a migraine. Don’t get them any more, thankfully. I spent most of today researching toxic mould, to see whether my home environment could be poisoning me. I had a chat with a very helpful lady from Mycologia in Australia, who seemed more interested in helping me than in taking my money. What I described didn’t sound like a mould problem to her, and she suggested I start by getting a HEPA vacuum before an expensive inspection. So I’m gonna give that a go. In the mean time, I’m gonna rest because my head is drifting into the twilight zone.

There’s some more research out confirming the association between XMRV and CFS. It’s sounding more plausible to me, although I’ve no idea how I would have picked up XMRV. I wonder if it’s possible to get tested for it, out here in far-flung Australia. Even if I was positive, there’s no recommended treatment yet… so for the time being, I’m going to keep doing what I’m doing; which is basically getting on with my life instead of waiting around till I feel well.

I’m encouraged by the news that a friend from my CFS support group has joined a gym. I’ve been working out lightly with weights for a few days, and now that my arms don’t ache like buggery, I seem to be doing OK with the exercise. My insomnia lately has been pretty bad, and that’s been bugging me.

I recently realised that the way to make your dreams come true is to help others to make theirs come true, so I’m going to put more attention into that from now on. It also leaves me less time to focus on not-feeling-well. I still do the odd Stop-Stop-Stop from Gupta’s programme, and listen to the meditation CD occasionally but it’s been a couple of months since I did it hard-core. I’ve been using the Sedona Method release process more than Stop-Stop-Stop.

Tonight is my last night as President of my Toastmasters Club, which means I can focus on my speaking career instead of club leadership. I’m still battling with anxiety at times, but it seems to go away when I get some form of emotional release which is happening more and more often what with my acting classes, and when I’m totally preoccupied with something else. That means I actually feel less anxious when I’m public-speaking or performing, because I don’t have time to think about not feeling well! Weird.

Woke up this morning feeling depressed and washed out. “Unrefreshing sleep”, as they say. Well, I’ve never been a morning person so this is just more of the same. I think it was mainly about feeling overwhelmed and the zoned-out feeling in my head doesn’t help. I tried some anti-histamines yesterday to see if it did anything to my nasal congestion; but it did not. I also tried some Benadryl PE cough suppressant to try and help me get to sleep last night, and I think that helped a bit.

This afternoon I went to my men’s group, which I really enjoyed. There’s something about having a group of guys who don’t judge you; who accept you for who you are and where you’re at. I few years ago I would never have told anyone that I was depressed; the stigma would have been too great and I would have felt ashamed. But what do you know… everyone in the group has been depressed at one time or another. It’s normal. It’s natural. It’s not what you want, but it’s part of the whole experience of being human.

Meanwhile, I have big plans for the future, and I’m working towards them. For some time I’ve been working towards becoming a professional public speaker or comedian. I’m not exactly sure how it’s going to pan out, but I’ve got a few ideas for going forward. The main thing to deal with is my fear of failure. It’s unlikely that I’m going to hit the nail on the head first go, but I’m tired of feeling listless and like I’m not going anywhere. My fatigue is worst on the days when I have to get up in the mornings, but I cope reasonably well in the evenings. So evening gigs should be do-able. I need to keep reminding myself to be patient because it’s going to take some time to get the skills that I need and to do the networking that I need in order to get bookings. In the meantime, I’ll coach other people and pass on the communication skills that I’ve learned so far – They say that the way to fulfil your dreams is to help others fulfil theirs. Having a direction of some sort leaves me feeling more optimistic and less anxious than when I just have a vague plan and little real direction.