I (literally) am Titanium. Medical motivators for trekking 5000km with three horses.
People keep asking me why I have chosen to undertake such a big and crazy project that is Big Horse Trek. Fair question. You may notice if you ask me this that I pause. It’s not straight forward. There are a LOT of different reasons for me coming up with this idea. I think when I first tried to justify if I could/should/would do this, I jotted down about 21 reasons in the space of 5 minutes…one day I might go through them all for you. But for now, I will focus on one obvious reason for deciding to undertake this crazy trek: moving past my recent medical history.
I want to make up for lost time. I feel like I have 10 years to make up for where medical issues meant that I couldn’t do what I wanted to, and decisions I made were all related to my health (and the evil by-product of being sick, like trying to find money to PAY for being unwell). So, I thought today, on the anniversary of my two big spinal surgeries (in 2012 & 2018), I thought I would write a blog about my medical motivators for Big Horse Trek.
In all honesty, the past ~10 years had been pretty crap (major understatement) in terms of my health. First there was the ovarian tumour in 2007 (fortunately this was benign, although the surgeon later told me that when she initially saw my scans, she really though it was going to be malignant). It took the doctors three months to diagnose, despite having apparently ruptured twice and me having a lot of pretty significant symptoms (that is a whole other story – all I will say is that I fired my GP after that incident and it was the beginning of my scepticism of the medical system and the start of learning how to fight for my own medical rights).
Then the spinal issues started in 2009. No, there was no impressive accident, no fantastical story to gather everyone around the campfire to tell. The best I can come up with still is that it was probably caused by a combination of having an underlying genetic issue in my spine, and then overloading my back with lots of heavy lifting when I was zoo keeping at Healesville Sanctuary. But again, this took over a year to even get an initial diagnosis. Turns out I had (guess you could say still have) a spondylolisthesis (where fractures in the facet joints of the spine led to one vertebrae slipping forward over the top of the vertebrae below) with associated degenerative disc disease. The chronic pain flowed in to me developing Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia (unfortunately both of these conditions still have a HUGE stigma around them, including within much of the medical industry).
There was also an ankle ligament reconstruction in the mix (chronic ankle rolling over the years with the 'breaking point' being a big roll while I was playing ‘Kalahari rules Volleyball’ while I was living in South Africa for the second time in 2008). Then throw in some depression and anxiety into the mix (triggered by the massive changes in my life (e.g. chronic pain, forced career changes, inability to participate in sports the way I used to, physical limitations, the effect on my ‘social life’ (or complete lack thereof)).
I was a mess. Having so many medical issues was not something I was used to after always having extremely good health.
My first spinal surgery was on the 21st June 2012. The shortest day of the year (in terms of daylight that is!). I had spent the previous three years actively avoiding spinal surgery, but we (I had a pretty awesome medical team by this stage) had exhausted our conservative options with no luck. I ended up having a single level fusion at L4/5 (my L5 vertebra is fused to my sacrum anyway- just something congenital that can happen, so it is more like I had an L5/S1 fusion for those interested/‘in the know’). I now am sporting three titanium screws within my L4 and L5 vertebral bodies. So, like I say in the title of the Blog ‘I am Titanium’- and I really do mean it- I literally AM titanium now!
The surgery helped a with my daytime pain, which was an improvement, although it took quite a number of years for the daytime pain to really settle down. But from day dot after the surgery, I started having intense pain at night. Pain that made me feel like the daytime pain was now completely insignificant. No one could figure out why. And this was frustrating for me, as with all the pain leading up to the surgery, lying down had always been a comfortable, pain-free position I could go to. Not anymore. So, for 6 years after my surgery, I could not get more than 4 hours sleep before waking up in the most intense pain. NOT ONCE. I would have people I know with kids tell me I had no idea what it was like to not get any sleep- well, I tell you what, I sure as hell do. And the ‘sleep’ I would get was not restorative. I would wake in intense pain. Not a nice way to be woken multiple times a night. On a bad night, I would wake up about 8 times and not get more than 60 minutes sleep at a time. On a good night, I would sleep a maximum of 4 hours. It was completely position dependent too (lying on my sides was ok, lying flat on my back would bring on the pain).
I have no idea how I physically functioned for that many years on so little sleep. I was still on gallons of painkillers, sleeping tablets, and muscle relaxants. After the first two years, I gave up trying to find an answer. I started to accept I would live with the pain for the rest of my life. It was hard. I was still also having some daytime pains, but this was now nowhere near as bad as the night-time pain. It was completely relentless. And I felt completely hopeless.
I had gone back to uni and started a (Master’s level) Physiotherapy degree. This was quite a change from my previous career in zoology, which I loved and still miss to this day. But with all of my medical bills, I needed to find something where I could get a job, so unfortunately job stability and money won over my life-long passion of working with animals. Uni was physically, mentally, and emotionally taxing. And I was trying to function on a few hours sleep a night because of my mysterious back pain.
I somehow made it through the degree, graduating in 2016, and always there was pain in the background. Until the end of 2017, where things took a bit of an unexpected turn. My usual GP was on maternity leave. I was seeing one of my back-up doctors for more painkillers and she commented (as they always would) on my high doses (and longstanding use) of painkillers. Of course I wanted to stop them (and of course they give you a sceptical look when you say this). And in actual fact I had been able to wean down from what I had previously been taking to get through uni, let alone prior to the initial spinal surgery. But functioning without them was impossible. I needed sleep to work, I needed to work to live (and pay off my long-standing medical bill debts and uni expenses, which I have only JUST managed to pay off FINALLY a few weeks ago), so I needed painkillers to help with the sleep. She asked if I wanted to have a review with my neurosurgeon who had done the initial operation. I laughed her off… saying he’d tried for 18 months to figure out what was going on and was at a loss, as were physios, doctors, everyone! Hell, I’d gone and gotten myself a $40 000 HECS debt (*cough* uni degree) to become a physio to try and understand my own physical problems more and I also still wasn’t sure what was going on.
But I thought I’d humour her, and in December 2018, I went back and saw Brendan, my surgeon. I love and respect my Brendan anyway, so I knew he would still take me seriously, even if we again concluded that it was some pain amplification response and there was nothing we could do, so I should try to ignore it and get on with my life (which is the best we could come up with last time). I got some updated scans done to take with me, and low and behold it showed up something else.
When he first mentioned it, I’d never heard of it: Baastrup’s Diesase. Hmmm… never heard of that. I jumped on to Dr. Google…. Ahhhh- ‘kissing spines, of course!’. Every horse owner knows what that is! It’s very common in horses; not so much in humans (although it is more probably a case of that is is not picked up in a lot of cases). So, what is it? Basically, it’s where the spinous processes of two adjoining vertebrae are contacting and create a new joint (mine had also developed a big, inflamed cyst, which was only discovered under the knife). There isn’t a huge amount of info on it for humans- they basically say it’s a condition of the elderly (and clearly me). The worst part- if we had done a posterior approach for the first surgery, rather than the anterior approach, I probably never would have had this issue (but at the time, we made the best decision – hindsight can be an evil informant).
I had a CT-guided cortisone injection into the area of the spine where my bones were contacting and rubbing against each other (the Baastrup’s area). I walked in sceptical but open-minded (I still didn’t believe Baastrup’s was causing ALL of my back pain- I mean, the surgeon had been taking 3-monthly scans for 18 months after my first surgery to try and figure out this new pain, and nothing showed up despite my pain then, surely something else was going on too?). But you know what, the cortisone helped SO much. For the first time in 5.5 years I was able to sleep at night (well, after the first month of cortisone-induced insomnia wore off, which was almost worse in a way than the night pain). I also found my Chronic Fatigue Syndrome and Fibromyalgia symptoms essentially disappeared.
When I went back to the surgeon with these results, I had done my homework. I knew the options but wanted to hear it from him. He offered me another CT-guided cortisone script for when this one wore off. Well, yes, but is this fixing the issue, or just masking an underlying problem? What is the way to FIX this for good? Yep, surgery. He knows I always try to avoid surgery if I can (I’m clearly still not very good at that though!), but am also realistic that sometimes it is the only option. After so many years of pain, I had enough. I wanted the surgery booked in.
It felt a bit auspicious, and I only realised a few days after booking the surgery, that it was booked in to be exactly 6 years to the DATE (21st June 2018) after my first spinal surgery in 2012 in the exact same hospital with the exact same surgeon. This time the surgery is what I like to describe as a “bastardised laminectomy” as it was not a traditional laminectomy where they generally remove a spinous process (SP) from a certain vertebral body, but here the surgeon was removing part of the SP from above and below where they SPs were rubbing together. He also discovered a cyst in spine with inflammation , so he had to cut the bone through the lamina down to the level of the spinal cord.
I went into this surgery with no expectations, well, actually with some cynicism as to whether it was going to make a huge difference, but some hope it would help to some degree, seeing as the cortisone injection helped. The surgery was a massive help. And boy am I glad I had that done.
Since then I’ve been able to do things I haven’t done in years – sleeping a full night is AMAZING. Never underestimate the value of getting a full night’s sleep. I still have no idea how I could function on next to no restorative sleep for so many years (and get through a Master’s level uni degree!). I’m back to running PAIN FREE (yes, I ran while I was having back issues, but always had pain during and after running- now I can run for an HOUR and not have any issues (aside from my complete lack of fitness). I no longer see my physio or GP about my back (love them both, but seeing them weekly, as I was doing for a long time is just a bit too much for my bank account!). I’m horse riding without pain. I’ve been able to do things I could never have managed like boxing, weights, push-ups, burpees (not that I like doing those). But the fact I can again do all of these things without major pain issues is pretty damn amazing. I don’t need hardcore painkillers anymore (I don’t take any regular painkillers now for my back! If my back is flared up, I occasionally take an anti-inflammatory, but that’s about it).
It’s not all sunshine and daisies though. I have had a few episodes of back pain since the surgery, but they have been just that- episodes that I have been able to manage and settle down (thanks also to the knowledge I gained from my $40 000 HECS debt (*ahem*, I mean, my physio degree) and my many years of being on the ‘patient’-side of physio too). Not sure it will ever be perfect, but it’s better than I ever thought it would ever get and I try to remind myself that if I do have a flare-up so that I don’t freak out too much.
So how do I come back from spending 10 years of my life where I felt like I wasn’t being me? Wasn’t the true me? Where I’ve felt like I’ve missed out on so many ‘normal’ life events I’ve watched my peers experience, that I know I now probably won’t ever experience myself (read: marriage, kids, homeowner, etc.)?
That’s where Big Horse Trek comes in. Three surgeons have individually and in isolation (one of which was also completely unsolicited) told me that I’m likely to need more spinal surgery later in life. You know what, I don’t want to know about it. While everything is so good, I’m going to make the most of it. I’m going to live a life I want to live while I can and try to do some good for the world in some way, shape, or form. Maybe I won’t need the surgery (that’s what my surgeon and I decided we would say at this point in time – we’ll cross that bridge if we come to it). So, I am going to finally get on with life and not pay so much attention to the pains of the past. I will respect them and manage what I need to. But I will no longer let pain dictate my life.
Time to do something out of the ordinary. Yeah, I considered doing something like an Ironman, but for some reason that didn't seem 'big enough' and taking three horses 5330km down a remote trail along the east coast of Australia just seemed more appealing (and 'easier') to me. Go figure.
Bring on Big Horse Trek.
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