It's been five years since the onset of Meningococcal on a flight between Brisbane and Adelaide struck me down and changed the course of my life.
Who can ever say that they've had Meningococcal Disease (rare in itself), beaten it without hospitalisation, antibiotics, or an accurate doctor diagnosis at the time… and are still here (in one piece with everything still accounted for) to tell the story?
I can't think of anyone else I’ve ever known who this has happened to, but it's most certainly happened to me.
In typical ‘me’ style, I chose to completely downplay the illness for many years in my mind and words, to give myself the best chance to fight it, survive it and then recover from it.
For the first year, I didn’t even know that I was dealing with Meningococcal. All I knew, was that it was something horrendously bad and when it first happened, I even said that it felt like something was very, very wrong.
It was only when I consulted with a professional Brisbane doctor around a year later, that he retrospectively diagnosed me as having had Meningitis based on all the events and symptoms that I described to him.
It gave me an overwhelming sense of relief that finally I knew and understood the ordeal I'd been through and why I was suffering from such extreme fatigue and other issues in its aftermath. Finally, it was the closure I so desperately needed.
Hearing this at last made so much sense to me because I know how invasive, intense and unrelenting that illness was.
The next question that I needed answered was whether it was viral or bacterial. The doctor said it was not medically possible to do blood testing for Meningococcal a year after the event to confirm it was this bacterial version of Meningitis (as opposed to the less severe viral meningitis).
After telling the doctor everything, all the circumstantial evidence pointed directly at Meningococcal… including the fact that I had infected another person through close intimate contact four months after its onset, which doesn't happen with the milder viral version of Meningitis - especially after four months.
After getting over the initial shock of my belated diagnosis, and the scary realization of what I had actually been dealing with, I quickly discovered that my ability to survive that catastrophe was nothing short of a miracle thanks to my survival instincts.
Now that my illness had a name, and a bad name at that, it felt quite terrifying. I had been fighting Meningococcal Disease all alone without the hospitalization and antibiotics I so desperately required.
After also consulting with another doctor about it from the same medical practice, she couldn't stop staring at me with wonder, amazement, awe and curiosity, like I was some type of medical miracle. I mean, who else has managed to survive Meningococcal the way I have?
Even when I knew the truth - that I managed to survive Meningococcal - I kept referring to it as Meningitis to play it down in my mind. Meningococcal is a terrifying disease, and the word itself is associated with immense fear because we all know what it can do. I’m not the only one who has heard about it, countless times on the radio.
No one truly knew what I went through, but I sure did. I remember how rapidly I was breathing, feeling so breathless and weak. My nails had turned completely white due to the ferocity of the infection and my body's overwhelming response to it, which is otherwise known as sepsis - a condition that accompanies Meningococcal Disease but not viral meningitis. More circumstantial evidence.
After the plane landed and I got home, I collapsed onto the couch and couldn’t even move. It was hard to speak or blink. I stayed completely still as the fight of my life was taking place inside my body, unbeknownst to anyone but me. Meningococcal hits you hard and fast. It is ruthless and unforgiving. It's something I'll never forget.
I remember managing to say (barely) to my partner, who was with me at the time, that it feels like I could almost go to hospital. Not realizing what I was dealing with or how dangerous the situation really was, I remember him saying that maybe we should just see how I go and keep an eye on the situation.
We'd taken a flight that day. The last thing any of us wanted to do was go to hospital. To be honest, I don't know how I would have found the energy to go to hospital anyway. All I could do was lie completely still.
By the next morning, I dragged myself across the road for an acupuncture session that lasted nearly two hours. The acupuncturist was shocked at how bad I looked and swung into gear with the treatment. This involved not only the acupuncture, but also moxibustion that involves sending heat to the vital organs to help fight pathogens.
I had turned yellow, indicating severe liver problems. My heart was also racing due to fighting the infection and it felt as though I was struggling to get blood flow to my extremities with tingling and then numbness of hands, arms, and legs. My hands and feet were freezing cold (in the heat of late January), my neck was stiff, and my head was splitting.
I really should have been in hospital, but due to the suddenness of it, and the fact it began on an aeroplane of all places, I was completely blindsided, barely able to communicate or even move. Though somehow, out of sheer survival, I forced myself to do what was in my control, which was walk those few meters to the acupuncture so closely located nearby. It was virtually on my doorstep.
I couldn't wait around for others to act or help me. It felt like it had rapidly progressed overnight and I needed treatment within minutes, not hours, not days, not weeks. I didn't even have the energy to convince my partner who didn't truly realize the emergency of the situation. I strongly believed in the benefits of acupuncture and knew it would help me given that it addresses everything - organs, blood, brain and more. So all I had to do was get there and let it work its magic.
The acupuncture worked, but given the intensity and nature of the infection, it was only temporary. After a few days, the acupuncture relief would wear off and severe numbness, breathlessness and organ problems would rapidly worsen again.
So, I would have another session, which would temporarily improve it again. Even with the treatment, it still felt horrific, and I couldn't do much of anything, but I just kept getting it done because I didn't know what else to do and something seemed to be working to some degree.
Simultaneously I sought western medical help, as I still felt horrendously ill and wanted answers. It was a struggle to drive, or do anything... so I was mostly housebound for a long time. Frustratingly, those doctors had no idea, hypothesizing and testing for Ross River and Glandular Fever.
They completely disregarded my description of events like the horrific migraine, the exhaustion, the stiff neck. How did these people get to be doctors? They were completely ignorant to the hallmark symptoms of Meningitis.
At least acupuncture seemed to be doing something worthwhile. Now I recognize that it was keeping the sepsis part of the illness at bay until the infection finally cleared around four months later. That's how long it can last if you're not treated by antibiotics. It stays with you (and transmissible) for as long as it takes for your body to build immunity.
The sepsis is what leads to the loss of limbs, due to blood clotting caused by the body's overwhelming response to the severe infection you have. So, acupuncture was probably a good treatment for avoiding that end-scenario. Not that I had a clue at the time.
Now that I’ve worked really hard to recover from that illness with a disciplined lifestyle, exercise and near perfect diet over the last five years, I now have the energy to run 8km per day, which is remarkable.
It's also great that I can now function without so many of the long-lasting aftereffects I experienced including organ dysfunction, tinnitus, and Chronic Fatigue Syndrome that later turned into Fibromyalgia. Due to my determined actions to get well, many of these have either been improved, forced into remission or eliminated altogether.
So now, with an epic, hard fought recovery, I feel like I can confront it and tell it as it is:
I survived Meningococcal Disease.
There, I said it.
So... I hear you asking, what is Meningococcal Disease?
Well, Meningococcal Disease is caused by strains of the bacterium called Neisseria meningitidis. It can be transmitted through close and prolonged intimate contact with an infected person. I don’t know how I got it, but what I do know is that I was on a trip, staying in a nice, high end hotel. I used their pool and a spa… then in the day or so following that lovely hotel stay … BOOM, life threatening mystery illness that is later identified as Meningitis.
I haven't stayed in a hotel since then. As you can understand, I felt like a long hiatus.
The main types of Meningococcal seen in Australia are Meningococcus B, W and Y.
Meningococcal disease is a rare, but serious and life-threatening, infection. Symptoms appear suddenly and people can die very quickly without medical help. Unless you’re me, and you do something completely ‘out there’ and very, very risky, which was acting on gut intuition by getting immediate acupuncture and moxibustion, then you’ll inevitably find yourself in the hospital whether doctors have figured it out or not.
I know that rapid treatment with antibiotics would have been the best thing I could have had… but that is only going to happen if you’re lucky enough to have a doctor or medical team that actually considers the possibility that you might have Meningitis to begin with so they can then perform a lumbar puncture immediately to confirm it is Meningococcal and administer antibiotics with rapid speed.
Based on my experience with some very incompetent doctors, my guess is that even if I was hospitalized, there’s a good chance they wouldn’t have figured it out and instead sent me home. This has happened repeatedly to other Meningococcal sufferers, which inevitably caused their deaths. In my case, if they sent me home, who knows what would have happened because speed, accurate diagnosis and antibiotic treatment are everything.
To help you understand Meningococcal, in case you or someone you know ever does experience it, it has a range of symptoms depending on its severity. If you have any of the following symptoms, you should seek urgent medical treatment:
- rash of red or purple pinprick spots, or larger bruise-like areas
- horrendous headache (migraine)
- neck stiffness
- discomfort when you look at bright light
- nausea or vomiting
- feeling very, very sick.
- loss of appetite or refusing to feed (in young children)
- irritability or fretfulness
- extreme tiredness (or floppiness in young children)
- aching or sore muscles
- painful or swollen joints
- difficulty walking, and maybe collapsing
- grunting or moaning
- difficulty talking
- having fits or twitching (in young children).
How it Spreads
Meningococcal disease spreads when people are in very close contact with each other for a long time – for example, kissing intimately and living in the same household. While I don't understand how I managed to get it, I know for a fact that I passed it on to one other person, through intimate contact four months after its onset, leading to another life threatening, traumatic event.
In this spin off, my partner suddenly collapsed, vomited violently and lost consciousness, all at home while I was at an acupuncture appointment. After discovering this shocking situation on my return, I called for an ambulance and he was rushed to hospital.
In any other circumstances, Meningococcal Disease is quite difficult to catch. Given I was still infectious with it due to not having been treated with antibiotics, he caught it too... though luckily, he fared better than me in the end, managing to avoid the sepsis that took hold of me with such intensity.
The bacteria can only live outside of the body for a few seconds, so you can’t catch Meningococcal Disease from casual contacts or from the environment. The bacteria do not spread easily by sharing food or drinks.
Between 10% and 20% of people carry the bacteria in their nose or throat without showing any signs of illness but are not a risk.
Long Term Effects
Some of the long-term effects of the disease include:
- loss of arms and legs
- deformed arms and legs
- aches and stiffness in the joints
- scars on the skin
- ringing in the ears (tinnitus)
- deafness in one or both ears
- kidney or liver failure
- blurred or double vision
- learning difficulties.
This is why I have long avoided referring to it as “Meningococcal Disease” … it’s not particularly nice, is it?
The last five years have been hugely difficult. No one could possibly understand what I’ve been through, and I’ve kept much of it hidden and down-played it to help me survive and thrive beyond it.
It’s one of the biggest achievements of my life, being able to survive this horrendous illness with no western medical help whatsoever, but probably the most integral one given my life depended on it. I guess it just highlights my strong will to survive and thrive, which is my most defining characteristic.
This inherent trait has enabled me to survive and thrive beyond some truly horrendous adversities while retaining my personality and sense of humor.
I'm proud and relieved that I survived and I no longer take good health for granted.
Don't ever be afraid to TAKE ACTION and do what it takes to survive, thrive and be happy. Be your own best friend.