THE BRUTAL REALITIES
Quadriplegia – and for me that’s zero finger movement, zero arm movement, no legs whatsoever. Yet just a tiny bit of shoulder flex. And my neck is quite weak too.
Breathing Insufficiency – I can’t breathe for shit. Prior to July ’17 I used nasal mask ventilation, this was for anywhere over 20 hours per day (increasing over a 10 year period). Then in July ’17 when a tracheostomy tube was inserted, and subsequent 24 hour ventilation required.
Feeding Tube – As I can’t swallow, I can’t eat (I’m nil by mouth). So I had a PEG tube inserted directly into my belly for all my nutrition, medications and liquids. And on a side note I only eat organic (mostly vegan) soups & smoothies.
Speech Difficulties – Now this becomes much worse if I’m tired (to the point where I’m impossible to understand), but in general I just have a pretty bad slur. It’s not totally disasterous but it’s not great either.
Energy Levels – Well here we have the good, the bad, and the ugly. And quite often this depends on how I’ve slept, but on most days I’m good for 5-6 hours – however if I’m talking a lot it can be a pretty sudden and steep decline.
Manual Handling – Being a quadriplegic obviously I can’t do anything for myself. And by that I mean I have people move my limbs for me all the time, I’m ceiling hoisted out of my bed and into my chair, and I also have people to roll me over at night. All of this is often a slow process.
A SEARCH FOR ANSWERS
To be brutally honest there’s been times I’ve wondered about my Lyme Disease diagnosis (even though my blood tested positive). I mean for me I’d look at other Lyme patients and I’m a bit like WTF. But I can’t move? How can that fit?
Only of late though I’ve been doing a new treatment, and what keeps coming up in the machine readings – Lyme, mycoplasma, rickettsia, EBV, parasites, mould, etc etc – the whole textbook Lyme family. Far out!
So maybe I am still green! Could be worse. But at times it does bother me why I just can’t move?? I honestly don’t know why that is!!
Possibly it’s a combination of things??
HEALTH STORY – LYME STORY
I’m a young bloke who became ill over ten years ago with a chronic neurological disorder, leaving me quite disabled; a quadriplegic in fact. I’ve lost movement, I have speech difficulties and I’ve lost oh so much of my own independence; yet it’s losing the everyday aspirations of career and family that hurt the most.
As you can imagine, any chance of a normal life slipped away. Instead my days (and years) became a constant round of hospitals, doctors’ appointments, poking, prodding, testing, blood-letting, treatments and enough pills to make me rattle.
After years of specialists and testing to eliminate all the possible diagnoses, I finally found a doctor who sent my blood overseas for testing and it came back positive for Lyme disease (Borreliosis). So what was this Lyme disease thing that I’d never even heard of before?
Lyme is a bacterial infection (typically the result of a tick bite) that, without treatment, can have serious repercussions on the human body. It is known as ‘the great imitator’ because it can be mistaken for many other diseases.
Symptoms can range from chronic fatigue, fibromyalgia, seizures, paralysis or even Parkinson’s-like tremors. Most Lyme sufferers are also afflicted by a range of ‘co-infections’ such as Babesia, Bartonella and Rickettsia – all with their own nasty symptoms. The good news is that, with proper medical treatment, recovery is possible!
However, in many countries, Lyme is not yet recognised as a ‘chronic’ condition. Typically a short course of antibiotics is all the treatment you’ll be offered, even though the symptoms can persist and amplify for decades.
Then in Australia – due to a single study of indigenous ticks not revealing the American strain of the offending bacteria – our government and health authorities say Lyme doesn’t exist here. Even if you were infected overseas (as I was), it’s a struggle to get proper treatment in this country. Despite the fact that there are now thousands of people here with a positive Lyme diagnosis.
Every year Lyme awareness events are held worldwide. I’ve attended the Melbourne event held at Federation Square twice and meeting with other Lymies helped me to feel like I was no longer alone in this sometimes overwhelming battle.
Just like in the early days with AIDS/HIV, it’s pretty tragic when the sickest of people have to battle authorities so they can receive proper treatment.
Hopefully history will record us as having been the first Aussie Lyme warriors, paving the way for future generations to receive prompt intervention and effective treatment so others won’t have to suffer for years and lose quality of life as we have done.