From my hospital bed – long, rambling version

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 Dermatomyositis 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

Comments

  1. Phil
    I’m sending you a big snogarooni kiss. Knowing you I’m sure you’ll soon be up and about again mate. (And leave those nurses alone…)

    Looking forward to meeting up again at some point

    Love Kim

    • Leave the nurses alone? I fell in love with half of them :)

      Actually, when I’d recovered enough to be able to hold conversations with them and they found out how I earned my money, I soon found myself the most popular man on the clinical ward. Being low paid and working horribly long hours and shifts, they all wanted my advice on making money online. Sometimes, in the quiet of the night, I had four or five standing around my bed while we shared ideas on how they could make extra money.

      But as far as I know known of them have taken any action. They’re all too tired after work I guess.

      And thanks for the kiss :)

      phil

  2. Oops! Sorry to hear that, Phil, though I’m glad and relieved things are better now. A cousin in Sydney was diagnosed with an uncommon auto-immune condition recently, so I can imagine what’s going on in your life lately. Take care, and if I can help in any way, please let me know! :-)

    All success
    Dr.Mani

    • Hi Mani
      nice to hear from you. I tried contacting you on Twitter a couple of weeks ago, to let you know about the dermatomyositis, but found you’d unfollowed me :) Not that I blame you after I hadn’t tweeted for months. But it was your encouragement that kept me on there in the first place – just as I was coming to the conclusion that it was a waste of time you persuaded me otherwise.
      phil

      • Yikes! Fixed that, following you on Twitter now, Phil. Had no idea what was going on, thought you’d decided T. wasn’t for you – and stopped posting!

        Thanks to Martin Avis’ newsletter, I heard of what had happened. If there’s anything I can help out with re DM, please let me know.

        My knowledge isn’t up to date, but rheumatology was my pet subject in med school, and I even won a prize in final year (and if I remember right, one of the cases there was Polymyositis!)

  3. Hi,

    Oh my, what a struggle and what a story….

    Blessings to you, and may you fully recover and be back on your feet, soon.

    Regards,
    Laurie

    • Thanks for the blessings Laurie. I’m out of hospital and at home, sleeping a lot but getting online when I can.

  4. Sorry to hear you are buggered up so badly. I’m wishing you a speedy recovery and optimum future!

    Take care, Phil.

    Dennis

  5. I’m absolutely gutted, I thought I was your favorite nurse lol

  6. Virginia Sanders says:

    Sending blessings and well wishes to you and yours. Always thought that you were one of the Good Guys now know you are Great. Your approach to the problems you are experiencing is quite refreshing and inspiring for all of us.

    I wish you all the best and pray for a full recovery.

  7. Mel Bernstein says:

    Phil,

    I’ll never forget the first time I came across you
    online-(about a decade ago, I think) looking at
    me through the bottom of a ‘pint’.
    One of the world’s great avatars.

    I knew immediately there wouldn’t be any
    ‘BS’ on your pages.

    I wish you the best.

    Mel

    • Mel

      sorry for the long time it took to answer your comment :)

      I’ve always really liked that photo. It was taken by an SEO expert I was having a merry afternoon with in a pub in York in the UK. Co-incidentally I’ve just discovered that my travel site is now ranked top of Google Places for ‘oldest pub in york’ (with or without the quotes). That’s a bit strange, because Google Places spots are supposed to belong to the business. Anyhow, not complaining :)
      And I’d love to keep using that pic. But my hair’s turned grey, and now I’m not allowed to drink because of the drugs I’m on, so it would be a bit daft.

      phil

  8. Sorry to hear of your problems. Your newsletter is one of the few I look forward to. Wishing you all the best.

  9. So, that’s where you’ve been (hangin’ round w nurses!) and what you’ve been up to, eh?! LOL, good to read/listen to your writings/ramblings again, its been too long :-) Michael Campbell tipped off his readers, that’s how I found out. Thanks Mike!

    Phil, thanks for being an inspiration, for spreading humor and wit and brilliance! Godspeed, thinking of you, and wishing you health and many blessings!

  10. sandra nelson says:

    Glad to have located you again. You were one of the first mentors I followed soon after I learned to turn on a computer in 1999. I am very sorry to hear about your autoimmune problems. I am under a similar gun myself and am in the process of getting a diagnosis on a myopathy syndrome that has put me on canes and sometimes in a wheelchair on days when the pain is really bad. Keep looking up and I have signed up for your newsletter again. I missed you.

    Sandy

    • Sandy
      sorry for such a long time in replying. I answered a help of comments, then got too tired to keep going and then never got back to them.

      Hope you got some sort of positive diagnosis, and you’re getting treatment that has made you feel better, and hopefully get better.

      phil

  11. Wishing you the best,

  12. I was saddened to hear about this. I hope you will make a full recovery very soon. It’s no fun being sick and doing hospitals – Get Over It :)

    Your newsletter is one of the handful I read and still subscribe to. And have for many years. In an internet world of pure rubbish and me me me. You always give value and inspiration to your readers. Thank you.

    Healing and prayers coming your way!

    Cathleen

  13. I’ve been a bad boy neglecting my e-mail inbox.

    While going through pages of crap, deleting messages left and right, I come across your newsletter and (as always) stop everything else I’m doing to focus on your message.

    So sorry to read about your condition – but glad to hear that it seems to be getting better.

    I wish you all the best and a speedy recovery.

    Take care,

    Marko

  14. Len McGrane says:

    Hey, Phil. So sorry to hear your news! How can someone so active and full of life get laid to low? Trust you will slowly be able to work your way up to being relatively untethered from the health system, and able to get out and help people and enjoy your writing and pictures again.

  15. Hello Phil,

    Came across your website after many many years of buying your Mini Site Profits book. I am sorry to hear of your illness and I am praying for a full recovery for you! Your friend in Florida, U.S. Sandy ;)

    • Hi Sandy

      glad you came across me again :) Lots of people around the world are praying for me, but according to doctors a full recovery is not possible. It’s just something I’ve got to learn to live with and it will never completely go away. There might be a year or two or even longer, of remission, then wham. It can hit hard again. So I’ve just got to learn to live with it.

      The thing that bothers me most about it is the travel ban. well ban isn’t strictly true, because no one could stop me. I’m just strongly advised not to because of the dangers of catching something on the long plane trip from Australian to the USA or Europe.

      phil

  16. Hi, Phil – wow, I had no idea :O) – as my father would say, keep fighting the good fight! You would probably have enjoyed the weather this year in western Scotland because there was a lot of dull grey days and not as much sunshine as we would have liked.

    It sounds as if you have a good medical team around you – and that’s always a great comfort when you’re challenging their knowledge with something unusual.

    Best wishes
    Margaret