It's 1994. At the age of 24, I am living and working independently in Sydney in a share house. I don't hate Christmas yet, and each year, my mother gets a photo of me on Santa's knee for a laugh and a memento (I was almost 24 years old in this photo). It's the only photo I can find that shows what I looked like just before all this started.
One small event a few short weeks after this photo was taken changed the course of my life forever. Had this one event not happened, I am certain something else would have been the trigger further down the track. What was it? Picking up some fresh pasta at the supermarket and taking it home to cook it.
The Very First Trigger
It was the one meal that changed my life. We got fresh pasta from the supermarket, took it straight home and cooked it and ate it. The following day, home alone, I threw up. A LOT. I am certain I emptied the entire contents of my digestive system. Sitting on the cold tiles, hugging the toilet bowl and the bathroom floor, feeling like I was about to pass out, I spent around an hour of chewing glucose tablets (concerned about low blood sugar), throwing up, drinking water, throwing up and so on and so forth. Not a fun day.
I had never had food poisoning before. In fact, I had only ever thrown up once before in my entire life. This was a new experience for me. Once I realised this wasn't going to pass quickly, I called my mother, who drove 90 minutes up the freeway and after several hours, I was well enough to travel and she took me home for a few days. In hindsight, I should have called an ambulance.
You Have Food Poisoning - but are you just trying to get a week off work?
The next day, I take myself to a medical centre to speak to them about the food poisoning. In the ultimate 'shitty timing', the week before, an exposé had been on one of those dodgy arsed current affairs programs about people faking food poisoning to get time off work. Welcome to the first person who wasn't going to believe what was wrong with me. He wasn't to be the last. A 7 minute consultation and I get sent out with a medical certificate for the week. No tests. No suggestions on what to do to recover.
There was a warning sign
I went back to work, not 100%, but feeling reasonable. Several months go by and one week before I was due to go on an annual holiday with my mother to the Gold Coast, I develop a food sensitivity / irritable bowel issue. Winding back to 1989, while living in the UK, I developed IBS (irritable bowel syndrome) and could not tolerate dairy for 2-3 years. The IBS was never correctly diagnosed or treated. My gut had been susceptible for quite some time.
Every morning, I would drink a glass of orange juice, this morning, it runs right through me. I think nothing of it. Fast forward one week and when we land on the Gold Coast, I stop at a cafe and grab an orange juice. Within a few minutes, it ran right through me and then a wave of fatigue hit me like a tonne of bricks. It was like nothing I had ever experienced.
The past year's holiday, we spent our week visiting Movie World, Sea World, walking on the beach, eating out and having a fabulous time. This year, I spent my time sitting on the balcony, sleeping and feeling incredibly lethargic.
The Rapid Decline and first diagnosis of CFS
After my 'holiday', I went back to work for a brief period of time, I think it was under 2 weeks. I struggled to get up the stairs to my desk. I worked close to home (10 minute drive) and I would literally drive home, lay down for 40 minutes, then drive back to work. I am certain that more than once I fell asleep and was late back. It was apparent something was terribly wrong and within a matter of days, a GP at my local medical centre diagnosed me with Chronic Fatigue Syndrome and gave me a doctors certificate for 3 months off work.
A series of standard blood tests showed nothing. I was given no suggestion for treatment other than to rest. I vaguely recall being asked if I was stressed and the first suggestion was made that this was in my head. Sadly, again, it was not to be the last time this would happen. So I took my 3 months off work and moved home, quit my job, moved out of my apartment and put all my belongings in to storage, where they sat for maybe 2 years before I decided to let the majority of them go.
What exactly is CFS?
It stands for Chronic Fatigue Syndrome. When people ask me what CFS is, this is what I tell them. 'It's the name the doctor gives you when they can't figure out what's wrong with you.'
For me, it was a crippling fatigue and lack of stamina, followed by what we all call 'BRAIN FOG' where you can't think straight and a mild to moderate amount of muscle and joint pain. My pain wasn't too bad. Some people were in agony. I was always grateful that wasn't me.
Then there was MCS (multiple chemical sensitivities)
CFS is relatively easy to cope with. I have always been perfectly ok with my own company. The isolation never really got to me. So many medical professionals suggested that I was suffering from depression. I wasn't. Ever. I did have anxiety issues, which we will touch on later in my story, and they were caused by the MCS.
After a couple of years of decline, loss of muscle mass and strength, a significant drop in blood pressure (I was 78/60) and becoming house bound, I developed MCS. I started to react to many things in the home that I shared with my parents. The smell of the dishwasher being on, the magazines, the laundry detergent, the smell of lingering cigarette smoke (I was living with a smoker), the paints I was using for one of my hobbies ...... one by one, I started to get headaches, lightheadedness and physical agitation from being around these things. Breathing issues too and a whole lot of anxiety. Weight gain quickly followed. As I know now, when your body has toxins and the liver isn't capable of getting them out quick enough, they get stored in fat cells. There was one period where I gained 5kg in just under 4 weeks - the time of a severe chemical reaction and what was to be the first of two nervous breakdowns that I had.
This illness may not start off as a mental health issue, but it sure as shit develops in to one. There will be chapters dedicated to this further in my story. If the hours that I spend writing all this down helps ONE person realise that their physical illness has also created a mental health issue and it helps them recognise this and come to terms with it, then my job is done. It's not until you tame the beast that is your mental health issue, that you can truly start to understand your body and your mind and find a way to heal. The mental health issue will undo any work you do on your physical health EVERY TIME. Read that bit again if you are unwell. It took me a really long time to learn that lesson. This is not taking ANYTHING away from the physical health problems you may have, but if you have developed emotional issues too, they need to be dealt with or you will never recover, no matter how many advances you make.
You have Rickettsia
It took three and a half years of being sick and several medical professionals to get my ACTUAL diagnosis. I cried tears of joy the day I found out that I had Rickettsia. Excuse the language here, but I finally had a blood test result that proved there was something very real wrong with me physically. Sure, I'd had a total meltdown, but there was an underlying medical condition at the root of the problem. I wanted to scream out 'OH FUCK YOU' to all those people who told me it was all in my head. I was angry that people who I thought really knew me didn't believe there was something wrong. Very few people remained in my life through all this. Most of my friends and acquaintances just vanished.
Mentally, I'm made of pretty tough stuff, unless my MCS is involved. That scares the shit out of me. Then I have very little control. Cause, you know, I like being able to breathe and not be dizzy or feel like I want to pass out. To this day, I have to create a 'safe haven' around me. I can tolerate most things for a short period of time, but at the moment, as I write this first chapter, I have been given an almighty kick in the arse and have had to work from home for a week, and the fatigue certainly isn't over yet.
One of my biggest thank you's goes to Dr Merlene Thrift for spending countless hours with me over months and months of appointments and not ever giving up until she found the underlying cause of my condition. I was tested for all kinds of things, Lyme, Mycoplasma and so many other things I can't remember, and the Rickettsia test came back positive. It cost thousands of dollars in tests, many of which we had to send overseas, but finally, we had an answer. I was very lucky that my last job had me on an income protection insurance plan, otherwise I don't know how we would have paid for it all. Many just can't afford it.
The day Dr Thrift told me I had Rickettsia, like I mentioned above, I cried tears of joy. I finally knew what was wrong. People had no choice but to believe me now. Sure, I had to take doxycycline (a pretty hefty antibiotic) on and off for 12 months to kill the infection, and sure, it released poison in to my body as it died off and I felt worse, but I had a diagnosis. My illness was real.
My doctor's office was next to The Elephant Shop in Cooranbong. The day I found out, I went in and bought a small drum. I wrote the date of my Rickettsia diagnosis on the drum. I then waited patiently and wrote the date that I got the blood test saying the Rickettsia had been killed. Unfortunately for me, the antibiotics not only killed the Rickettsia, but it also trashed my gut flora and has left me with a legacy that I'm still living with today.