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. I have a solution to the sunlight problem – move to Melbourne and then at least you will get several months a year where you can go outside without having to worry about the sun, PLUS you will be closer to me and to your granddaughter when she arrives ;) Bonuses all round!

  2. My granddaughter?

    I’m not that old am I? You’re making me feel ancient :)

    • Hey Phil,
      I’m sorry to hear of your medial condition, it kinda puts life into context. Blimmin’ typical tho, one of the nicest guys I’ve ever met gets struck down like this, when my next door neighbour is in rude health. I know it’s difficult to talk about debilitating medical conditions, been there and done that, but you have earned even more respect by ‘outing’ yourself. The mind has a powerful effect on our physical well-being, and after reading Tony’s reply, I hope you at least had a smile, and you felt a little better for a while.

      Keep your chin up mate, easier said than done, I know.

      Glenn

      PS. I have two grandchildren Phil, I feel younger now than I did 5 years ago.

      • It was a tough decision to openly talk about it Glenn, but the alternative was lying about what I’d been up to, or spreading more of that guru type b/s that infects this internet marketing/work from home crowd and gives it a bad name. And I couldn’t bring myself to do that.

        >Keep your chin up mate, easier said than done, I know.

        My chin’s up. Mentally I’m feeling better every week as the high dose of steroids I’m on keeps reducing and making my head clearer.

        And thanks for the “one of the nicest guys” bit. And take this opportunity to say the same about you – you’re smart, friendly, and interesting.

        phil

        • Awww shucks phil, that’s very nice of you to say.

          I must admit that I felt a lot better when I outed myself about my bi-polar disorder to the people my list. I was amazed at the support I received, and I felt I had a closer relationship with them.

          Glenn

  3. Phil, I have been reading your newsletter since 2002 – because you are a good man and a good writer.

    Signs tell us when we should take care of ourselves.

    If we do not understand the signs, Life slaps us.

    Just think positive – you can attract the positive vibes of 1000s of
    people. Others do not have this privilege.

    And do take care of Phil’s body that was craving for a rest. :)

    All the best indeed.

    John

    • I had no idea that you read my newsletter John, but pleased you do.
      Sorry that you pulled out of attending the Robert Puddy workshop in England last May – I was looking forward to meeting you there.

      phil

  4. Oh my gosh. I had no idea. I’m glad things you are at least you are getting the energy to write. Thank God for passive income. I shudder to think what people with traditional employment would do with this kind of situation.

    • Carlos

      I’ve discovered that passive income drops when you haven’t done any work for a year. I’ll write in detail about it one day soon, but I’ve lost hundreds a week in passive income because of domains expiring while I was in hospital and the auto renew set on the domain names not working because my credit card expired too :(

      phil

  5. Wow, Phil. Wondered where you’ve been.

    So sorry to hear that. I’m sure I speak for many in saying thanks for letting us know.

    We’ll be praying for you.

  6. Holy Moley, Phil!

    I noticed that you’d gone quiet (again) and was going to pull your leg about it, but sheesh, that’s awful!

    Best wishes for a speedy and *full* recovery, no matter what the men in white coats say! :-)

    Neil.

    • You’re not that noisy yourself these days Dr Shearing.

      And I know why. It’s because, like me, you hate all that hyped up internet marketing sales spiel crap.

      I’m keeping away from the men in white coats as much as possible. I prefer the nurses :)

      phil

  7. Keep sharing and take care of yourself! Best wishes from Canada

    • Sorry to take so long to reply James. It’s been a bad couple of weeks since changing the medication doses.

      Thanks for the best wishes, and hope all is well with you.

      phil

  8. Stuart Brown says:

    Hey Phil,

    Really sorry to hear about this buddy. (Think I saw you the week before at Martins lunch thing)

    I thought your quiet was due to enjoying wine, women and song!

    At least they have now been able to diagnose it, which is something to be thankful for.

    Can you get a referral to the Mayo Clinic?

    Might cost a packet for permanent treatment their. But I find myself wondering if it might not be worth at least getting a consultation and some tests over there. As if its that rare then a specialist might see something that the guys in Australia missed maybe?

    Anyhow, hope you start feeling better mate. Will send you some good Karma in my thoughts :-)

    Stuart

    • Hi Stuart

      It looks like I’ve found a decent specialist over here in Oz. He seems to know what he’s talking about and the changes he’s made to my medication have certainly helped.

      Be a while though before I can get to another London Lunch because I’ve been banned from flying overseas…maybe next April/May…so I’ll see you there

      phil

  9. Blimey Phil!

    Like Neil, I thought you’d just gone quiet, maybe off on one of your world tours, and was half expecting you to give me a shout for a beer out of the blue…

    I’m sorry to hear that’s not been the case, sounds like you’ve been through hell, and still have a ways to go.

    Remember what Winston Churchill said – “When you find yourself in Hell, keep going!”

    and on the big “C” thing, check out a UK site (can’t publish this kind of stuff in the US, the FDA don’t like it) that talks about cancer and Vitamin B-17: -

    http://worldwithoutcancer.org.uk

    [not one of my sites, honest!]

    and gimme a shout if I can help with anything mate!

    cheers,
    Matt Garrett

    • >and gimme a shout if I can help with anything mate!

      Help me with anything? I think sharing a cigarette with you at midnight, out in the freezing cold at Puddy’s event, may have caused it. I don’t even smoke, so I don’t know how you talked me into it. Must have been all those shots and pear ciders Justin was forcing on us :)

      phil

  10. Hey Phil..I always enjoy reading your newsletters because you don’t write fluffy stuff that many online marketers produce. My prayers are with you. Hurry up and get well so we can all benefit…and please keep writing.

    • Herman

      I don’t know about not writing fluffy stuff, I just try not to hype stuff up too much and ‘con’ people into thinking they’ll make packets of money without doing any work.
      Thanks for the prayers.

      phil

  11. Phil,

    Please know that you are being prayed for by my family and me — starting now.

    I’ve read your material since you started eons ago. I look forward to reading about your recovery very soon!

    kevin donlin

  12. Sorry to hear of your illness. I agree with John that the best thing you can do for yourself is to stay positive. This, combined with all of the positive energy coming to you from your many friends will pull you through.

    There are many documented, yet unexplained, cases of people with dire conditions suddenly going into complete remission, so don\’t discount the power of mind over matter.

    Best wishes and keep you chin up!

  13. Hi Phil,

    I think you’re doing the right thing with this by posting on your blog. I also think it is extremely brave of you to to talk so openly about your health problems and your illness.

    People will think non the less of you, and in fact they will respect you more for being honest with them.

    I wish you well, and keep positive!

    Roger

  14. Phil, your body may be giving you fits but there is nothing wrong with your soul. They say that a proper diagnosis is half the battle, so you’re covered for the first half.

    And now that you’ve let us all in on your adventures — you can have company of the heart for the rest of it. You have more people than you know — and quite a few you don’t (like me) in your corner, cheering you on every step of the way.

    Wishing you goodness always,

    Nancy

  15. Hey mate,
    Stay positive, the medication these days is amazing. My thoughts are with you and your daughter.
    Chin up,
    Ken

  16. Jon Andersen says:

    When you wrote about your muscles wasting away I immediately thought of our dear old Mike B who had MND, and I am glad in a way that you have been spared that misfortune.

    Best wishes to you mate and let everyone know this mad viking is telling them to take good care of you! :o)

    Cheers,
    Jon

  17. Patricia Reed says:

    Good Morning Phil,
    your blog certainly throws a whole new dimension open, when the body protests that loudly it just simply gets your full attention! I have no idea what your health & lifestyle were like beforehand, but I sincerely commiserate with what you have had to experience this past 9 months or so.
    I’m an RN & health practitioner, with an agenda to use the Net for increasing people’s awareness of how they can achieve vibrant health, and something like what you have experienced, is truly a wake up call of the highest order!
    If there is anything I can offer in terms of information, optimum supplement protocols to help rebuild your muscle loss, or dietary support, please just ask. You have generously shared great information in the past, maybe now it’s time for some of us to pay it forward!
    My very best wishes for a speedy & trouble free recuperation!
    Patricia

  18. Phil… mate…

    OMG. What can I say? Perhaps all I can say is “I know”. It was nearly 4 yrs that I was “away”, but give thanks to the wonder of the IM business, that it keep earning day after day, year after year.

    Hang in their my friend. As the frog says in the famous ‘motivational picture’ where it is half way down the pelican’s neck (and holding on for dear life)… “Never EVER give up.”

    I don’t know if you’re a praying man, but I am. I’ll be praying for you.

    Paul

  19. Good luck Phil. Brave of you to share this with everyone. You are one of the goody guys online. I wish you good health and every success for the future.

  20. Phil, I was shocked to hear what has happened…just thought, like so many others, you were off adventurin’ again.

    I agree with your daughter: time to move to Melbourne!

    And then, please check this out (I first saw Paul Bragg in the 1960′s when I was living in Hawaii)–it’s simple but powerful (Clint Eastwood follows this) :

    ACV (Natural–undistilled–organic, raw Apple Cider Vinegar) cures so many illnesses:
    http://bragg.com/books/acv_excerpt.html

    Plus, if you can find a good TCM (Traditional Chinese Medicine) practitioner, then please go for a visit. They handle the most difficult medical conditions in the world with acupuncture and herbs.

    We all love you and miss your wonderful newsletter.

    –Linda

    • I like living in the mountain clouds, and watching the sun come up over the ocean, too much to move to Melbourne. Got to say that I really like Melbourne too. I can see why it’s always listed in the Top 5 best cities in the world to live in.

      As for the Apple Cider Vinegar, gotta tell you that I’ve got a vinegar phobia. You’ll probably say it’s not like normal vinegar, but that makes no difference. I HATE the smell of the stuff. It’s a childhood thing, must have nearly drowned it once or something :)

      phil

  21. Eh up sithee Barnsley Phil

    Ah were reet capt t’ear tha’d bin badly. Ah’ve fair bin chunterin to missen for ages wundrin when tha’d next write one o’ them there e-mails.

    Then thee sez tha’s got some rare disease! Most Barnsley lads don’t get owt more exotic than gonorrhea (from them loose lasses in Wakey) or t’haemorrhoids, (from sitting on cold stone down pit.) But thee! Tha goes swannin’ off to Oz an’ comes down wi summat that can’t be cured by a quick trip t’quack in clap clinic! Ee lad tha’s in a mullock.

    Tha best remember Yorkshire motto: Ear all, see all,say nowt; eat all, sup all, pay nowt; an if tha does owt for nowt tha does it for thissen.

    But all laiking aside, I was really sorry to hear your news, Phil, especially the longer term prognosis and the fact that I shall be thwarted in my ambition to meet you on soon on one of your frequent trips to England. Hope all goes well Phil. All the best Tony.

    • Tony

      even though I’m from Barnsley I found your comment hard to read. Must be totally unintelligible to anyone not from Yorkshire :)

      >them loose lasses in Wakey

      I remember those girls :) I used to spend quite a bit of time in Wakefield, and when I was there a couple of years ago it didn’t seem to have changed much. A good place on a Saturday night.

      phil

  22. Hagen Hartung says:

    Dear Phil,

    I’ve been reading your stuff for the matter of 10 years now.

    You’re one of the true veterans & heroes of our industry.

    Listen to your body, take care and enjoy life as good as possible.

    All the best, Hagen :-)

  23. Hi Phil,

    You’ve always been an inspiration to many of us – being one of early pioneers of IM and one of few gurus that walk the talk.

    Get well soon buddy!

    I’ll be praying for you!

    Best wishes,
    Adrian

    [WORDPRESS HASHCASH] The poster sent us ’0 which is not a hashcash value.

    • Hi Adrian

      thanks for the nice comment.

      >one of few gurus that walk the talk.

      If only I could talk the walk instead of walking the talk, I’d have spent the past 10 or so years jetting around the world pulling in the big dollars at seminars and workshops, rather than spending the big dollars going to them :)

      And if I’d got your technical skills I’d be teaming up with those on-stage-gurus to jv my products when they’ve got the crowds hyped up.

      Hope all is well in KL….still one of my favorite places. You’re lucky to live there.

      phil

  24. Hi Phil,
    There is something that can help you. Have you heard of bentonite clay? You drink it and it pulls the toxins out of your tissues. It is harmless and has been used for years. Doesn’t cost much, and you can get it in health food stores or online.
    Check: http://www.AboutClay.com
    Make sure you read the testimonials.
    Hope this helps! Take care.

    • It’s the first time I’ve heard of clay being used medically. Not sure if it’s available in Australia, but I’ll read though your site. Thanks.

      phil

  25. Frank Mullen says:

    Hey Phil, wishing you all the best :)

    Frank

  26. Hi Phil:

    I was wondering where you’d gone to. I’m sorry to hear about all this. If you need anything at all – mailings, interviews, promotions, whatever, my List is your List. We go back a bit, so I hope you know that I mean it.

    Take care of yourself, and read up on as much natural/homeopathic stuff as you can. I trust modern medicine, but only so far.

    Keep us all posted, and again, if you need anything, you know where to find me.

    Frank

    • Hi Frank,

      thanks for the ‘my list is your list’ offer. I’ll take you up on it one day :)
      I still read every mailing you put out. And even though we’ve met at seminars/events I’ve yet to hear you on stage. Have to get around to that one day.

      phil

  27. Hi Phil -

    Big Hug. You were extremely kind to me prior to and when we met at my first London Lunch getting on for two years ago now. Just a few words you said then made me rethink how I was approaching this online life. I hope anything I can say here may help you.

    I was suddenly struck down with a rare form of spinal abscess in 1998 which crushed my cord and terrifyingly left me paralysed from the waist down within 36 hours from the onset of symptoms. Fortunately emergency neural surgery restored my movement but I have never forgotten how frightened I was when I ddin’t know what was happening, the relief when my condition was given a name and treatment started and the hardship of the long term recovery.

    And as my condition was so rare, I remember every medical person from the most senior down to the most junior being excited to see me. In medical terms I like Royalty! Sometimes the doctors and consultants (at one point I was under THREE at the same time) forgot that I wasn’t a text book. I remember one doctor asking me to tilt my foot out sideways and me not being able to do so. I think he was thinking about symptom groupings when he said “you should be able to do that” but I made him realise I was a person when I screamed back “I KNOW!!!!”

    Don’t let the doctors treat you as a novelty case – unless you feel strong enough. Refuse to let hoardes of junior doctors “visit”. Make them realise that YOU are a person. Stay strong. Focus on getting better. Do NOT believe you will get cancer. Fight from inside your head.

    And keep writing.

    All the very best,

    Susan

    • I wasn’t trying to be kind to you Susan, and didn’t know I was. You just looked a bit lost when I walked in. And you were very interesting to chat with.

      >Do NOT believe you will get cancer. Fight from inside your head.
      I’m fighting.

      See you in London again one day.

      Phil

  28. Big hugs! Doctors don’t always know everything. We’re hoping for the best, and I hope you’ll feel better soon. You have lots of support, just look at all these comments!

  29. Hey Phil,

    That you don’t ““do what many other Internet marketers would with their lists” is why we love you. You’re one in a zillion. Take advantage of all the positive healing energy coming your way and keep sharing.

    Please let me know if there’s anything I can do to help.

    Big hugs,
    Ros

    • Hi Ros

      sorry to take weeks to answer.

      >Take advantage of all the positive healing energy coming your way

      I can almost feel it in the air :)

      >Please let me know if there’s anything I can do to help

      when I get the energy to complete the book I was writing before getting ill you can be an affiliate :) If you think it’s good enough of course :)

      And don’t forget to go to Deer Cave in Borneo if you ever get back there. Stay at the 5 star Royal Mulu Resort (unless you’re scared of snakes and bats and flying in small planes through mountain passes to get there) it’s expensive but worth it. Disclaimer: I must admit that I got a freebie week there to write a travel article.

      phil

  30. I remember that Puddy event (just). Was it the beer?

    Bad news, but good that they have found some drugs that help you start to function. And I hope that your recovery will accelerate. My thoughts are with you and your family.

    I’ve had me own eureka moment regarding twitting and facebooking and all that stuff lately – just how unimportant they are when it comes down to it, and how important family and friends are. Bugger blogging say I (unless you’re comunicating something really important like this)

    Hope you will one day fly again and that we will see you on an internet marketing cruise, or in UK.

    Lots of love Janex

    • Yeah, it was the beer Jane. And the staying up most of the night :)

      I’ve been advised not to fly overseas until at least next May, because of immune suppressant drugs leave me too open to catching something.

      And talking of catching, you’ll never catch me on an internet marketing cruise. I can’t think of many things worse than being trapped on a ship with 500 internet marketers. Too much of a loner for that :)

      But at a UK landlocked event, yes.

      phil