July last year is when I left Australia with no intention of returning. There were a number of reasons I chose to leave, but one of them was my health. Unfortunately I am one of those sick people, the ones who always seems to have something wrong with them. I have too many diseases and conditions that make life probably a little more challenging for me than the average person.
One of these issues is my back, which has been giving me grief for years. I’d mentioned previously that I was diagnosed with scoliosis at 19, but having looked through old emails that is actually incorrect. I found an email between a specialist and myself looking for treatment, and in these emails I was adamant I hadn’t been born with the disease and had developed it over the past few years. I was 22 at the time and had recently been diagnosed, and was really unhappy with the diagnosis.
When the doctor told me I had scoliosis and two twists in my spine, I asked what I could do to fix it. They told me that it would never be fixed, but I could make it better with surgery (although my case was not so severe it would warrant surgery) or alternatively I could take painkillers to manage everyday life. As my young naive self, I told the doctor they were an idiot and went and sought a second opinion. This doctor gave me the same advice, to which I gave the same response and sought a third opinion. Much to my disappointment and frustration, the advice was the same.
I was at a complete loss, I was in absolute agony and didn’t want to have surgery at 22, I was active often in the gym working on my fitness and had recently cleaned myself up to be the healthiest I had ever been, so I didn’t know why this was happening to me now. I wasn’t getting the professional guidance I needed, so I started my own path of seeking out professionals to find help. I saw a physio who was able to help on a brief level, however I wasn’t seeing the progress I was hoping for. He gave me exercises that helped change my physical appearance so it wasn’t so noticeable, but it was not helping the actual cause.
After a while I was seeing no progress, and he had also mentioned he didn’t understand why I was in so much pain with such a small curve. This frustrated me to the point where I just stopped seeing him, thinking that it should go away on my own and that the pain must be in my head. I was sure I could find the root cause and be able to work on it from there, so I decided to wait until I could find the right avenue to take. Unfortunately I got worse quite quickly and I ended up losing my job as I was unable to sit in a car for half an hour to drive to work. My boss at the time told me I was lying and thought that the xrays I sent through of my spine were fake.
I started to feel overwhelmed that no one was believing me and that perhaps I just had something wrong with my brain. But it wasn’t long before I again got worse and found my periods of inability to walk increasing. It got to the point where I was unable to carry my car keys or phone in the left pocket of my coat because it would put unbearable pressure on me, so I started seeing more and more people, looking for relief and some kind of quick fix.
There were many people I spoke to that didn’t understand where the pain was coming from, so I decided it was best to see as many people as I possibly could to increase my chances of finding out what was happening with my body. I have seen so many people including a number of physiotherapists, osteotherapists, chiropractors, myotherapists, remedial massage therapists, exercise physios, the list goes on. I have tried acupuncture, needling, cupping, clinical pilates, exercises and a range of stretches to help ease the pain. With the numerous people I have seen, I have learnt a lot more about the issues with my back, and they are not just related to my spine.
I have some disease in the muscles in the right half of my body where they simply don’t develop. They have deteriorated to the point of an elderly lady without reason. The best explanation I have heard to explain the condition is like an elastic band. It is firm and bounces back quickly, like the muscles of a normal person in their 20s, but as you age it starts to split and fray, which is not something that can be repaired. Although this was very hard to hear, it felt like some kind of a relief that someone understood what was happening with my back.
I was told that I could slow down the deterioration with light exercises only on one half of my body, but anything that I did that included both sides of my body, including walking, would continue to damage my body. I was told that I would likely require the use of a wheelchair in the near future and needed to reassess how important an active lifestyle was for me.
I remember arguing this at the time and becoming severely depressed afterwards, thinking that perhaps it would have been better if I didn’t go in search of these answers, because what I heard was certainly not something I wanted to hear. I slid back into an unhealthy and reckless lifestyle because I figured there was no point trying to work so hard to fix something that was just not possible for me, so I might as well just enjoy my time.
I would do things extremely bad for my back, for example backpacking with a 27kg bag through Spain or going snowboarding in Japan. Both of these were hard to recover from, but I was certain that if I were destined to be in a wheelchair soon, that I would be doing all I could to enjoy my life before it happened.
The end of 2018 and 2019 were exceptionally hard on my mentally for a number of reasons, a primary reason being my health. My symptoms were continuing to get worse and I wanted to buy myself more time, so I took other steps like having a breast reduction to alleviate some pressure from my back, and also turned vegan as I had heard how bad dairy is for diseases such as arthritis and had seen some astonishing success stories.
Unfortunately I was well past the point where things like that would be able to make the changes I was looking for, although they have both had brilliant results, it is far from a solution to my diseases. I started seeing more health care professionals trying to seek ways to reduce the pain as at this point I had accepted that there would be no cure. There were long periods of times where I was seeing a number of them frequently, and often 3 different people a week.
At the start of 2019 I realised that I may have been wrong to tell the doctors when I was first diagnosed that they were wrong. What did I know, they were the medical professionals and I was just a young girl who didn’t want to hear what they had to say. So I started looking into options for surgery. I found one that I liked the look of, so I booked myself in to see an orthopaedic surgeon at a nearby hospital.
I explained to him my issues and he didn’t say much. He assessed me and sent me for CT scans, MRI’s, xrays and some neuro blood test. When I went back to see him, he told me that physically there was really nothing wrong with me. I had a 24 degree curve in my spine, which is classed as minor and other than that everything was perfect other than a cyst they had picked up on one of my ovaries. This was exceptionally confusing to hear, I was living in a constant state of pain. I had been diagnosed with scoliosis, arthritis and some muscle disease that I wasn’t sure I had been told the name of.
When I explained this to him he asked to do a few more physical tests on me, which revealed I had some nerve issues, even though he couldn’t see anything in the tests he had just sent me for. He said that he believed I had MS (Multiple Sclerosis) and that he wanted me to go see a neurologist for confirmation. I walked out of the hospital in a trance, trying not to break down before I got to my car.
I didn’t know a lot about MS, other than what I can remember as a child that my sisters stepmother had it and needed a lot of help walking because her body wouldn’t do it by itself. I called my dad and sister struggling to choke out the words and then pulled myself back together and drove to work. I told my assistant, who is an absolute angel and she started helping me to find a neurologist that I could see. I was set to leave Australia in 3 months so really didn’t have a lot of time left.
Together we called over 26 neurologists in Melbourne, all were booked out until around mid 2020. It was so hard to find the motivation to keep going, not only because everyone we called were booked out, but I also didn’t want to have the confirmation of what the orthopaedic surgeon had thought. Eventually we found one, and one I met with him I understood why he was the only one who was available. He was arrogant and completely uninterested. He told me I didn’t have MS before he even tested me, but I made him agree to test me, although he said it was a waste of my money. He told me he would let me know the results, but I certainly didn’t have MS.
Sure enough the results came in and I didn’t have MS. I asked him what he thinks it could possibly be with his professional experience. He said “I don’t know. Nothing. It’s in your head.” I guess by this time I had matured a little more and thanked him for his time before walking out and reluctantly paying his hefty fee. Again I had a meltdown in my car before I had to pull myself together and get on with life.
I decided that India would be a fresh start for me, with alternative medicine and I surely would be able to find something that works. I had told a number of the health professionals I was seeing frequently that I was going to be doing a one month yoga teacher training course. All strongly advised me against it as my body couldn’t handle it. Anything with pressure on both my arms and legs would be increasing my rate of deterioration. One even told me that I really need to come to terms with the fact that I will never again be able to run, dance or do yoga and that I needed to set some more realistic goals for myself.
By this point I didn’t care. I had no value for my life as it was. I was either going to find something that would help me, or would kill me quicker. Honestly, either of those options was better than doing nothing and waiting for it to hit me. They were right, yoga school was really hard. And it took a big toll on my body, but there are certain things that really helped me. I have learnt to listen to my body a lot more and understand what it needs and what I can’t do.
I can’t take yoga classes with other instructors, I have to do my own practice. For one I don’t want to be that annoying girl that has to give a 10 minute explanation about why my body doesn’t work properly. And for two, if I choose to stay quiet and test myself by attempting it, I find I often have to skip more than half of the programme they have set out because I simply can’t do it.
I have now been practicing yoga almost daily for the last 10 months, although sometimes it is really difficult. Lately I’ve been having a lot of struggles with my back which has been impacting my ability to walk properly, I think this is a lot to do with the current lockdown situation and not being able to be so active other than within the hostel. So I thought it would be a good time to do an experiment, taking a photo of how my back currently is and compare it with photos that one of my medical professionals took just before I left Australia.
Seeing this comparison has made me so incredibly happy and proud that I have been able to make such a difference in my back. I am glad that I didn’t have the surgery and that I found my own path. Although the results are mostly only on a visual level as I am still having a lot of struggles daily.
To this day I am still undiagnosed. I have no idea what this invisible disease is that I am fighting, and I also have no idea if I am winning the battle, the war or either of them. I think that the rate of deterioration has certainly slowed down, and I am looking at other options like Panchkarma to help internally or a secondary breast reduction to help ease the tension.
I have every intention of continuing to live my life as much as I can, and hopefully this disease or group of diseases doesn’t overcome me anytime soon, as I am living a truly beautiful life, one that I wake up enjoying every single day.