Six months ago after developing a rash and a fever which doctors initially thought was Dengue Fever, a virus transmitted by mosquitoes, I was rushed into hospital and after a week of being tested for over a hundred different viruses, I was diagnosed with a very rare auto immune illness (affecting just five in a million people) where my body is attacking it’s own muscles.
Since then I’ve either been lying in a hospital bed, barely able to raise my head from the pillow, or at home too weak from muscle loss and doped out on drugs to be able to let you know why I haven’t written a newsletter since early December.
Thanks to some powerful new medication which I have to take just once a week (though I take plenty of other drugs the rest of the week) I’ve finally got the energy to write about it.
(The new drug is used to treat childhood leukemia, to delay HIV turning into AIDS, and to cause pregnant women to abort… so you can imagine how strong it is. It almost knocks me out for two days a week).
my rashed and savaged hands hooked up to medical equipment
For many months now I’ve not answered emails, tweeted, logged into Facebook, updated my web sites, written a newsletter or indeed done any work at all.
I’ve not been able to.
Part of me wants to keep quiet about this. There’s a little voice in my head saying “do what many other Internet marketers would with their lists, or on their blogs, and just make an offer and rake in some cash and don’t explain my long absence.”
Or perhaps pretend that I’ve been secretly working on some top secret project that’s pulling in hundreds of thousands of dollars a month, and I’m about to reveal all next week when all you have to do is buy whatever I’m selling at an inflated price and you’ll be driving around in the sports car of your choice by next month. But that’s just not the way I operate and I can’t do it.
None of this makes writing about my illness any easier. It’s something I’m finding hard to talk, or write, about. And my head is rather muddled from the drugs, which doesn’t help. So if some of this doesn’t make sense, or is disjointed, forgive me.
The truth is that it’s been going on a lot longer than six months.
I’ve been asleep for most of the past year.
Really, really asleep. For like 16 or 17 hours a day, or just lying in bed too exhausted to move and this Internet marketing stuff has all seemed just so unimportant.
The symptoms started over a year ago, a few days after I flew back home to Australia from Rob Puddy’s UK seminar, when I fainted at a rock concert. As far as I know, I’d never fainted in my life until that night, but I put it down to a combination of jetlag and standing too close to my old internet marketing mate Matt Garrett in the bar at Puddy’s seminar (that’s a joke Matt 
)
September I fainted again while out shopping, and seeing I still felt like I had jetlag and was tired all the time I went to see a doctor for the first time in about 5 years – but an examination and a whole range of blood tests found nothing wrong.
Before long I was sleeping most of the day, and the rest of the time just too exhausted to do anything. This time the doctor (a different one) diagnosed depression, even though I insisted I’d got nothing to be depressed about, and prescribed pills which made me even sleepier and made my thinking even cloudier.
Things continued to get worse. Just before Christmas I fell over in a bar in Melbourne and badly hurt my neck (and no, I hadn’t been drinking… my legs just turned to jelly).
Back home after the Christmas holidays doctors visits became a regular thing, but examinations and tests couldn’t find anything wrong with me, and I started to believe that perhaps I was depressed after all and that my thinking/thoughts were affecting my physical health too.
Then January, or February, or whenever it was, the rash and a high fever appeared and my life hasn’t been the same since.
After being tested for just about every virus known, including all the horrible deadly ones (and in my imagination I’d somehow developed all of them but they weren’t showing up in the blood tests) it was a relief to be visited by a team of doctors and told that they’d moved on from viruses and the blood tests, and a blood culture from blood taken from me when my temperature was over 40, had finally revealed that I’d developed something called Polymyositis. They all seemed quite excited by this because of its rarity and non of them had ever seen a patient with it before.
Polymyositis? It didn’t sound too bad. Quite a poetic sing-song word.
So at first I was relieved. Not a deadly virus after all (the family vet died horribly last year after a bat transmitted a virus to a horse and he got splashed with blood from the dying horse). But the relief only lasted until I got one of the doctors to do some research and print it out for me.
Muscle wasting? My body eating it’s own muscles? My heart’s a muscle. My lungs are powered by muscles. Would I suddenly stop being able to breath? Would my heart give out first? Would I become incontinent? Would I be able to eat? To talk?
Non of these questions were properly answered, but the medical team did take me off the anti depressants straightaway, which was something to be thankful for.
Within an hour though they were pumping me with a powerful cocktail of other drugs designed to dampen my immune system, and I jumped from a couple of anti depressant pills a day to over twenty other pills.
Then just over a week later they found they’d got it wrong. I didn’t have Polymyositis after all. The results of a really painful muscle biopsy in my thigh revealed it was the even rarer Dermatomyositis.
(if you want you can read more about Dermatomyositis here, or on the US Gov Medline Plus site, or at the Mayo Clinic which is probably the best place to be treated for it.
So I’ve got something that just five in a million people get, most of them women. And it seems it’s increasing in frequency among black American women. So not quite sure what that says about my genetic makeup
Talking of genetics, the diagnosis actually gave my daughter Kate a moments laughter. She was born with Phenylketonuria, a genetic disorder affecting 1 in 16,000
“Well at last I’m not the freak of the family anymore,” she joked.
But then really worried about me, she started crying.
Fortunately Dermatomyositis is not as nasty as something like motor neurone disease, where most sufferers die within a few years, but there is no cure for Dermamyositis and my lifespan is likely to be significantly shortened (insurance company studies suggest they should charge premiums for someone 12.8 years older because of the risk factor).
And here’s the big worry – a significant proportion of people who get Dermatomyositis are found to have an internal cancer – though full body CT scans and other tests showed I’m in the clear which is a relief.
However lots of stuff I’ve read says I’ve got a highly increased chance of getting it in the next couple of years – which is not a nice thought.
The other bad news is that I’ve got to stay out of the sun. Very hard to do when I live in sub-tropical Queensland, one of the sunniest places on earth.
Oh, one more thing before I stop this free flow rambling writing. I’m banned from traveling overseas for the foreseeable future (usually I spend at least a couple of months in Europe every year, photographing and writing content for my travel sites and attending Internet marketing conferences and workshops).
“What about travel?” I asked the medical team?
“Go where you want, if you’re well enough and not in a wheelchair” said the one in charge “just make sure you’re back here three times a week.”
I thought he was joking, but he wasn’t.
Phil
