New research on the effects of anti-depressants: The ‘Back’ flip

I have said it a lot, but mental health was not my initial intention for starting this blog. My intention was to keep a journal of my recovery from spine surgeries (plural) and discuss my methods of rehabilitation. But the most fundamental part of my experience this time around is still anchored in my struggles with anxiety and depression. It seems I signed up for the full adventure somewhere along the line (albeit unknowingly), from my struggle with addictions to pain-killers and their poor impacts on my mental state, to a tough journey getting back to a routine, and now (most recently) a really bloody ridiculous experience transitioning onto a new anti-depressant.

Sometime after writing my previous post, I saw my GP to discuss my exceeding levels of anxiety. Subject to this discussion he advised me to try a different anti-depressant in order to manage my symptoms. The main reason being that, if I am paying a lot of money to take the highest dosage of a drug, and it is not assisting me when I most need it, then I am probably wasting my money. Although I don’t fully agree with this statement, because I firmly believe that there is no such thing as a magic pill for our health, I was desperate. Tired of being unwell and unmotivated, sore and stiff… and just desperate for some normality back in my life. So, I agreed to make the change.

For those who have never taken anti-depressants and therefore have not been privy to the conversation between the patient and doctor when deciding which drug to take, this is how it goes:

Dr: “What are your symptoms?”

Patient: (lists symptoms – although a massively common symptom is lack of concentration and the ability to take notice of changes in your health, so this can be a challenge)

Dr: “Ok, well in that case we have serval options….”

And they will continue by listing the side effects of each drug you could choose from until you come across the drug with the least yucky side effects. Then you generally choose this one. But there is no guarantee that the drug you have chosen will work for you, or that it won’t send you into a spiral of extreme anxiety, suicidal thoughts, confusion, dizziness, vertigo (the list is too long for me to go on with here). The system is flawed from the beginning, and the worst part is that, by the time you are prescribed with an anti-depressant, your conditions is already really bad. So, taking any anti-depressant for the first time is a risk, because it may make you worse than you already are. Some anti-depressants have even been linked directly to suicide in some patients, while the same drug in others will set them on the road to recovery. There is just no way in modern science of knowing what is the best drug for an individual patient, aside from their symptoms.

Individual antidepressants can be grouped into different classes or groups, according to how they work chemically in the body. Within each group, there are usually several medicines that work in a similar way but may differ slightly from each other.

The different groups of antidepressants are about as effective as each other overall, but some people will respond to one antidepressant better than another. The type and severity of side effects can also be quite different between these groups of antidepressants.  

‘Anti-depressant Medicine Explained’ – NPS Medicinewise

For those interested in the scientific details, I made the choice to start taking Dothep, otherwise known as dothiepin or Dosulepin, which is classed as a Serotonin–Norepinephrine Reuptake inhibitor (SNRI). SNRIs are designed to slow the rate that the brain breaks down serotonin and noradrenaline, which leads to an increase in serotonin and noradrenaline activity in the brain. However, they do not commonly work as well as Selective Serotonin Reuptake Inhibitors (SSRIs). I made the switch from Cymbalta (Duloxetine), which is also an SNRI, with the assumption that Dothep would do a better job than Cymbalta, with a low side effect profile, as I had not experienced many side effects on Cymbalta. However, this was far from the case.

Within three days of making the switch from Cymbalta to Dothep, I had what became an ongoing case of vertigo, nausea and dizziness, loss of concentration and the ability to make decisions, and heightened emotions (which meant I spent three weeks on the verge of, or in tears, for no apparent reason) and a few suicidal thoughts. After six months of heightened symptoms of anxiety, and all of the life challenges it  brought with it, I did not think things could get much tougher, but as I said, I signed up for the full tour. So here we are.

I have spent the last year of my life putting things on hold for pain and surgery, but this last six months of my journey, between my experiences with returning to a full life along with my experience with mental illness, have been by far the most difficult.

If you read my previous post, you probably pick up on a few aggravating symptoms: I was struggling to get the support I needed in the workplace in order to return to work, recovering from spine surgery and a year of chronic pain; I had just started a new relationship, was living between houses, had changes in my friendship groups and sometime just after I published this, I lost a family member. I am a big believer that life is not here to serve us, and that we just have to take each high and low as it comes, but I tell you… there has been a nice run of life challenges in recent months. So much so, that I don’t blame my pesky little pills for not doing their work properly. In hindsight, I don’t exactly know how I thought they would be able to do their job amongst all of that.

The symptoms I have experienced over recent weeks on the Dothep are not part of my normal symptoms profile for my illness, and quite frankly, I am glad of that. After sticking with the drug for three weeks to see if the symptoms evened out, I went back to the doctor just a few days ago and begged him to switch me back. I don’t know if this was the right decision, and I expect I won’t know for another 6-8 weeks. All I know is that Cymbalta was working for me for a time. In regard to my anxiety, I made the decision to change jobs at work to help reduce anxiety and it has made a huge difference. Despite my emotional state and feeling of general illness as a side effect of the Dothep, my anxiety is almost non-existent and I have had a number of people comment on my change in mood. This, along with the fact that I don’t think I could handle another 6-8 weeks trialling a new drug at this stage, makes me optimistic about returning to Cymbalta.

With all of this coming about over the last week, either by some strange coincidence or a serious case of Facebook hacking my Google analytics, I came across this article yesterday. The article by Mark Brown discusses research into anti-depressants from 2008 in which some scientists believed that the only real effect behind anti-depressants is just a placebo. Their conclusion being that, in the double blind trial that was undertaken on SSRIs, patients who took the real drug only experienced an improvement in their mental health as they noticed the side effects of the drug kicking in, meaning that the drugs themselves only produce side effects, and the presence of those in a patient’s awareness is what will enable them to get better on their own. This was widely reported in the UK in particular. However, new research has found that patients treated with either paroxetine or citalopram (the SSRI’s used in the study) report a larger reduction in depressed mood than those given placebo regardless of if they report adverse events or not.

In the last few weeks I have had a number of people close to me ask if I have ever thought about doing it “the natural way” by going off anti-depressants altogether. Believe me… no one has thought about this more than I have. Not only because I am big on making changes and taking steps in my life towards better health and wellbeing, rather than taking a pill, but also because the journey of anti-depressants has not been easy. It adds another layer of symptoms and possibility for things to go wrong, and nobody wants that. Basically, the studies show that anti-depressants work. They may not work perfectly, and the effectiveness of the drugs vary from patient to patient, but this is an illness that we cannot even cure with medications, let alone cure via any proven “natural alternative”, the stakes are simply too high to take the risk. As Brown states in the article:

“Few people want to take SSRIs for the hell of it; and since there’s absolutely no “high” associated with them, there’s little incentive to carry on if they’re not actually helping you function. And depression is an emergency.”

I do vehemently believe that, once diagnosed with mental illness, our life choices matter. They will no doubt affect the outcome and our ability to survive.  As they do all of us – mental illness or not. However, mental illness is still so widely misunderstood, or not understood at all in some respects, that anything that has been proven to help is important. I can choose to live well, make good choices, ensure I have a nutritious diet and exercise in my day to day life, regularly see a psychologist, practice behavioural therapy to manage the known triggers for my illness…. but I cannot manage my anxiety in full without medication. Because there are still, 3 years on, aspects of my illness that are unknown to me – triggers that are unknown.

The problems that I have faced with mental illness have all related directly to how little society understands about the illness and its treatments. This is bigger than just choosing to go natural or not, because the known treatments still have many flaws. I recently updated my previous post ‘Always in the ‘Back’ of my mind’ with a link to a national survey on mental health in Australia, which could help scientist fill in the gaps of with vital information about symptoms, causes and treatments for mental illness.

caityleidoscope If you have been, or are being, treated for anxiety or depression, and are living in Australia, I urge you to register to participate in a major study on the genetics of depression.  The Australian Genetics of Depression Study, which is the Australian arm of an international study created to understand the genetics of depression, is recruiting Australian adults – aged 18 and above who have been treated for clinical depression.

This study is a big deal for people like me. Based on using DNA to compare with symptoms, experiences and medical treatments, the more we come to understand about the illness and how it relates to each individual, the better off we will all be in finding manageable alternatives in medications. Perhaps we may even know more about preventing the illness before it is able to develop in those genetically prone to it.

So, if you are being, or have ever been, treated for mental illness, and live in Australia, I sincerely hope that you will join the study. It is becoming an epidemic that will affect generations to come at a greater rate than it affects our society now if we do not act.

If you would like to find out more about the study, you can listen to the great podcast by Lynn Malcom of Radio National’s “All in the Mind” program:

The genetics of depression

Or visit the website for the study here.

‘back’ to Reality

Working on my ‘adulting’ 

When it comes to work, my career, and the dichotomy of my health over the last half-decade, this article rang many bells. If you interchange the word “chronic illness” to “chronic condition”, this article can apply to anyone who is suffering – not just those with cancer (as the article indicates). Frankly, I’ve considered everything mentioned here, and more, over my journey. I know that my health at work is my responsibility; as I have mentioned in each of my posts so far, I firmly believe that my health is my responsibility in all aspects of my life. However, I disagree with Jacqueline’s article in one fundamental way – it is not my responsibility to share the details of my condition with my colleagues.

Perhaps, because I have spent most of my professional life in the Australian Public Service (APS) I have some sense of entitlement to my right to confidentially. Either way, I simply don’t agree that my colleagues should hear my personal afflictions in exchange for their respect of my gradual return to work.

Insofar as my physical limitation like bending, twisting and lifting heavy objects, and the basic limits to my working hours and my general wellbeing (as with any able-bodied worker), I believe that it is my responsibility to communicate my needs with my colleagues. Only insofar as it relates to work health and safety procedures. However, I have found that taking this approach makes it difficult for others to accept that I am not doing the full scale of my job, or that I might be late to work, leave early or be entitled to days off.

My condition is so much more than the things that other can see. Much of my experience has been around the intricacies of taking medications, coming off medications, and the mental challenges of pain, anxiety and depression. Not only have I spent the last year suffering from a chronic physical condition, but I am also juggling it with what is classified as a chronic illness – anxiety and depression. These mental aspects are still widely misunderstood and misconstrued within our society. And if the aspects of generalised anxiety and depression are misunderstood, the aspects of mental health issues relating to chronic pain and illness are barely even known to exist. My experience of juggling two chronic conditions is not isolated, in fact it is extremely common for those suffering from chronic pain or illness to suffer chronically from anxiety and depression also. This podcast by “All in the Mind’ by ABC’s RN goes into a little more detail and I encourage you to listen if you have the time:

“The genetics of depression” – Presented by Lynn Malcom

Despite the best efforts of my current workplace to create a safe and supportive environment for me to return to work, no amount of planning and support will work if the manager and team members at the operational level don’t have an understanding of the process of a safe return to work. There is no blame on anyone specially here, because unless someone has gone through chronic pain or illness and tried to maintain safe employment, or knows someone close to them who has, they are almost certainly not going to understand unless they are trained to. At the operational level, safe work programs, reduced hours and other arrangements have only caused me significantly higher levels of stress after both my surgeries and I firmly believe that it is because workplaces everywhere have not figured out how to do it properly. This is just one more reason why I feel strongly about sharing my experience with the world here.

In my current workplace, HR have bent over backwards to plan and assist me in a safe return to work. My department engaged an occupational therapist, whom I am sure isn’t cheap, to work on my behalf as a conduit between my medical practitioners and my boss. This was in stark contrast to my previous employer, whose HR department offered me no assistance, instead often acting as a mediator on behalf of the department during meetings that I think may have been designed to pressure me into returning to work. Eventually, these meetings brought me to resign, and it was at this point in my career that I plummeted from an APS 5 (a mid-level officer in the APS) to and APS 2 – the lowest level you can get, where your core responsibility is to show up.

In Jon Kabat-Zinn’s book “Full Catastrophe Living” he writes that Dr.Hans Selye first brought the word stress to the fore in the 1950’s, based on his extensive psychological studies relating to what happens to animals when they are injured or placed under unusual or extreme conditions.

He defined stress as “the non-specific response of the organism to any pressure or demand.” In his terminology, stress is the total response of your organism (mind and body) to whatever stressors you experience. But the picture is complicated by the fact that the stressor can be an internal occurrence or event, as well as an external one.”

According to Kabat-Zinn:

“the interplay of external and internal factors in identifying the ultimate cause of the disease was very much in Selye’s mind when he developed his theory of stress and the notion that disease could originate from failed attempts to adapt to stressful conditions. Selyes was well aware that stress could compromise immunity and therefore resistance to infectious organisms:

“Significantly, an overwhelming stress (caused by prolonged starvation, worry, fatigue, or cold) can break down the body’s protective mechanisms. This is true both of adaptation which depends on chemical immunity and of that due to inflammatory barricades. IT is for this reason that so many maladies to become rampant during wars and famines. If a microbe is in or around us all the time and yet causes no disease until we are exposed to stress, what is the “cause” of our illness, the microbe or the stress? I think both are—and equally so. In most instances, disease is due neither to the germ as such, nor to our adaptive reactions as such, but to the inadequacy of our reactions against the germ.”

 The genius of Selye’s insight was in emphasising the non-specificity of the stress response. He claimed that the most interesting and fundamental aspect of stress was that organism undergoes a generalised physiological response in its efforts to adapt to the demands and pressures it experiences, whatever that might be…”

“Full Catastrophe Living” Jon Kabat-Zinn, (p288-9)

I discussed this concept at length with my GP, physio and specialist.  “I know it sounds crazy..” I would say “…but I have this overwhelming feeling that the stress in my life has seeped into my muscles and caused my back to lock up”. Before reading up about it properly, I was surprised to find that my practitioners agreed with me.

My recent flair up has taught me not to try and control things that are too big to control. When I decided to step down from my role the first time around, when showing up to work was all that I had to think about for my career, I had more, mental, physical and emotional energy to focus on my rehab. This was the step that enabled me to rehabilitate so well that I could compete in elite-level cycling. And here I am again in a new place of work, a different approach from HR, but still find myself stepping down to a rudimentary role to avoid stress.

The difficulties I’ve experienced in returning to work are not isolated to my workplace alone. Having the same experience trying to return to different workplaces after surgery is not a coincidence. Both workplaces found it extremely difficult to support my needs in returning to work and this is not about me, it is about the workplace and society in general, who have not yet learned to appreciate the weight of mental illness and the impacts of chronic conditions and disability on one’s mental condition.

On the other hand, I am gravely aware that spects of my recent experience were about me.

On the risk of not holding ‘back’

The stress of the workload and the workplace, along with my plight to be a real-life adult has had a slow deteriorating influence on my body. As I returned to work, over a period of ten weeks my body became tight and restricted in movement. I was unaware at the time, but the stress of returning to ‘real life’ along with the general stress within the workplace that effects everyone – returning to work, or not – was seeping itself into my bones and muscles. It literally felt as if it was literally weighing on my shoulders, putting pressure on my spine.

Because I was putting ‘adulting’ first, I ignored what my body was telling me. I simply told myself that I could do it; if I kept pushing I would make it back to ‘real life’, working full time and doing all the things I used to do. I kept pushing until I eventually collapsed. I woke up one morning to find that my back had completely seized. I couldn’t bear any weight on my left side, as my core muscles had given up. It was excruciating to even turn over in bed, let alone get out of it.

The stress of getting back to ‘real life’ had finally cracked me, and for the second time in my recovery my body said a flat-out ‘NO’ to the journey I was taking it on.  I went to the physio that day in search of some relief, and found myself in tears the entire time. Receiving kindness and care during my treatment reminded me that I hadn’t been kind and caring to myself lately. I needed that cry to release the stress, accept my setback, and give me the strength to reassess my way forward.

I went home that day with a clear understanding of what my body was telling me – this is real life for me. Not climbing the proverbial ladder at work whilst being a social butterfly, loving partner and home owner like everyone else in my life seemingly is. To me, real life and success markers are grounded in my journey over the last seven years, and I have realised that this will never change. Success to means  striving for good health and wellbeing and a soulful feeling of happiness, which will keep evolving as my back recovers and I learn how to take control of my battle with anxiety and depression.

My psychologist tells me that, at this time, it is highly likely that I am experiencing a depressive episode that is directly related to the stress that my mind and body have experienced in the last year with chronic pain. This and the stress of getting back to work, starting a new relationship (as heart-warmingly wonderful as it is) and the grief over friendships strained and lost while I was busy focusing on chronic pain and illness. It’s a hangover of sorts, where my mind is finally ready process these emotions. This is my real life.

@caityleidoscope:    “Lately I’ve been getting back into real life post-surgery and I’ve had far less time to stop and reflect – to breath and take stock. Adulting is hard and I am in awe of all of you who do it. It has been a while for me and it seems I have lost my knack for it. This pic is from my morning walk. I felt the humidity and heavy drops of rain on my skin; the cold breeze rolling in as the storm approached, and the striking colours of the autumnal trees popping against the grey sky. It was a moment of relief from the stresses of late and it helped me get out of my head and into my body again. I know this is the key to progress but it isn’t easy.”

I pushed my body to try and accept the stressful circumstances in my life, assuming that at some point I would just move past it. I think that this is an assumption that too many of us make in our lives from time to time, or all the time, with the potential for some very significant consequences to our health. Continuing to expect your body to respond well to stress will only result in worse circumstances over time. Diseases much worse than a back ache have been proven to result from ongoing stress. This is real life, because we are nothing without our health. We cannot be high-flyers or social butterflies when we are facing the types of illness that prolonged stress can cause.

Always in the ‘back’ of my mind

If you have been, or are being treated, for anxiety or depression, and are living in Australia, I edge you to register to participate in a major study on the genetics of depression. 

The Australian Genetics of Depression Study, which is the Australian arm of an international study created to understand the genetics of depression, is recruiting Australian adults – aged 18 and above who have been treated for clinical depression.

I recently joined the study and signed up to submit a DNA swab. The data alone could be enough to help change the way mental illness is diagnosed and treated, and by looking at this in conjunction with DNA who knows what scientists might find? 

Find out more and/or join the study here.

When I first started this blog, I thought it would focus on my experiences with injury, chronic pain and rehabilitation from surgery – I guess that’s what I originally meant in using the word “wellbeing” in the name. However, I’ve come to realise that this is only half of the meaning of wellbeing when it comes to my health. You see, after posting about anxiety and depression in my last post, I realised just how much my experiences with mental illness impact on my day-to-day capacity to navigate the challenges of rehab. It’s not that I didn’t know this cognitively before, but I guess I just didn’t give enough credit to how bloody tough just one of either rehab or mental illness can be at the best of times, let alone both at once.

To my surprise, it seems a lot of people around me read my previous post, and have since asked me how the process is going. Although I am happy to report that I am well shot of pain medications and only relying on the odd anti-inflammatory, I’ve found it very difficult to give a straight answer about how I’m going with my rehab generally. Being in my body and the experience of injury rehab day-to-day, hour-to-hour, minute-to-minute, and having that unhelpful tendency to set lofty goals, I guess I haven’t really had the right tools to take a step back and assess whether things are going well.

Usually I would measure my progress by determining whether I’d met any given goal, particularly when it came to work or fitness. However, goal setting has been a massive challenge for me of late. I’ve been finding it tough to set goals that are achievable or realistic, probably because I have unusually high expectations of myself. This pesky little characteristic of mine has become blatantly apparent to me throughout my rehab experience. I set what I think are reasonable goals, but my body will only heal in its own time, so I inevitably discover the far-reaching nature of my goals when my body doesn’t measure up to the task.

My perceived ability to reach (or not reach, as is the case of late) goals has a direct effect on my head space and levels of anxiety. In turn, my levels of anxiety have a direct effect on my approach to rehab. It’s an unfortunate Mexican stand-off that I find challenging day-in and day-out.

I’m rewinding it ‘back’ to talk about that dirty little word “depression”

I used to be someone who took the approach of “sucking it up and getting on with it” when it came to anxiety and depression – it’s one of the down-sides to having an alter ego like Eugine. I sucked it up because it meant that I didn’t have to acknowledge that I was unwell, and even better, that other people didn’t know. Regardless of initiatives like ‘Are You OK’ and others whose focus is to remove the taboo around anxiety and depressive illness, I think I was in denial for up to ten years until it all caught up with me a few years ago.

Depression and anxiety are a constant battle. To effectively manage these conditions takes a huge amount of commitment every single day. For example, making the conscious decision to simply get out of bed was a big one for me. There is nothing more terrifying than waking up in the morning and feeling your whole body burn at the thought of moving.

It hit me at a time in my life that I would’ve considered myself very happy. I had discovered a passion for cycling, I had a lot of friends around me, a great job and lived in a gorgeous house with a wonderful housemate. I had nothing to feel “depressed” about. But suddenly, for seemingly no reason at all, I began to suffer from a case of complete lethargy. I was training hard, eating well and sleeping like a log… but that was just it, all I wanted to do was sleep. I consulted with my doctor and had three separate blood tests to find the virus that I was sure I had, but it turned out that I was a picture of health physically.

“Caitlin” my doctor said one day, “tiredness is a symptom of approximately one thousand seven hundred illnesses. You’re going to have to give me more than this if you want me to help you find what is wrong”. Thinking that this seemed fair enough, I gave myself a week to notice any other symptoms before going back to see him. It was during this time that I realised it wasn’t that I couldn’t get out of bed, it was simply that I didn’t want to. I didn’t want to get up and head out for training rides, I didn’t want to go to work, and when I really thought about it I didn’t want to socialise either. It wasn’t because I didn’t love those things, because I did – I was happy with my life. But for some reason I just didn’t want to get out of bed and be a part of it.

After a few years of treatment, I now know that I had a lot of thoughts, memories and feelings buried underneath that needed to be brought to the surface and attended to. I will never know for sure why it all decided to show itself when it did, but I can’t help but wonder if it was precisely because I was happy, so there was room in my life for me to start dealing with things.

Depression and anxiety are a constant battle. To effectively manage these conditions takes a huge amount of commitment every single day. For example, making the conscious decision to simply get out of bed was a big one for me. There is nothing more terrifying than waking up in the morning and feeling your whole body burn at the thought of moving. Sometimes I would wake to my alarm at 5:30am for a bunch ride and find myself lying in bed staring at the wall until well after 10am, just searching for the will to move. My mind would play tricks on me. I feared the thought of moving, of rolling over, certainly of getting up and walking to the shower. It seemed like there was too much uncertainty in all of that. Too much to deal with. Too much could go wrong. I felt so much fear for no good reason. This, let alone getting dressed and figuring out how I would get to work… I couldn’t even conceive how I would get through a day of work in such a state. Every day was a monotonous process of battling fear. On days when I wasn’t riddled with fear I usually felt completely emotionless.

Andrew Solomon: Depression, the secret we share TED Talk

For those of us lucky enough to have never experienced anxiety and/or depression, let me explain to you this: a given person suffering from depressive symptoms will not necessarily be unhappy. For some, this may be the case, but for many it is like a cloud that settles over everything – including happy thoughts and feelings. They’re there, but they can be difficult to access and doing so takes energy. For me, I believe my condition to be a mix of both post traumatic stress (known as PTSD) and a natural propensity to suffer from anxiousness and depression. But a lot of the time that I am effected nowadays, it is layered on top of strong feelings of gratitude, optimism, and happiness about aspects of my daily life, and a lot of the time the people around me are none the wiser of my dark cloud.

One step forward, two steps ‘Back’

This is another long post – but I have never been known for my ability to tell a long story short, so no apologies there – but more so, it’s also very brutally honest. When I decided to start this blog, my core purpose was to keep a journal of my injury, my rehab and what I learn along the way. Something to assist the healing process.  So beating around the bush would defeat the purpose entirely. You won’t find me sugar coating anything here, it’s simply not who I am. What you will find, however, is a raw account of what this experience has been like for me – the good, the bad and the ugly. On that note, I encourage you to read at will….

Originally, I had planned to base my second blog post on the differences in my experiences between my first microdiscectomy and the most recent. The main difference, I had thought, was the use of opiate pain medications in the lead-up, during and after the first surgery versus a more natural approach to therapy throughout surgery two. My story was going to be a jubilant one – explaining how I managed to change my approach to therapy and proved that management of chronic pain, and rehabilitation post-surgery could be done without a focus on opiate or synthetic medications. However, my experiences over the last five or six weeks has changed the direction I thought this post would go.

Having managed ten months of chronic pain through physio, Pilates and Feldenkrais instead of pain-killers, I found that my body bounced back from the second surgery within the first three weeks. Every effort spent to improve strength and movement as a mechanism for pain relief seemed to be money in the bank for recovery. It was coming along nicely I found myself up and about, running errands and getting out of the house. I was out walking – albeit slow and steady – but this was in stark contrast to my progress after surgery one.

ABOVE: I have found reformer pilates an excellent tool to gently improve strength in the core, gluts and thoracic; as well as increase mobility in the recovering vertebrae. The professional crew at Physio Sport in O’Connor, ACT have been writing and updating reformer programs for me since before my surgery. 

Those who know me will tell you that I’m not one to take it slow and I’m not one to do things by halves, even when I’m telling myself I am – a bit like my ability to write a short blog post. I push myself above the average without even realising. Obviously somewhere, somehow, by week four post-surgery I had over-estimated my body in its recovery, and consequently had to pay for it. By week four the muscles down the left side of my spine had ceased, making it difficult to stabilise or weight-bare. 

RIGHT: @caityleidoscope: “Am still slow and 1/3 of my pre surgery walking distance. But I’m told to take each step with mindfulness and purpose – am working on changing my neural pathways to recruit the correct muscles in each basic movement.”

My GP (whom I trust) put me on a strong muscle relaxant – much like Valium – with the message that it was imperative for my body to be comfortable during this period so that my back could heal. Rest was the number one priority. So here I was at week four, propped up with pillows in my bedroom, with the window open and warm summer breeze rolling over me. The sweet smell of the flowers blooming on the lemon tree outside, incense burning on the tall boy whilst sucking purposefully on a frosty fruit, all before 10am. Without a shadow of a doubt I was high as a kite. This was exactly how my GP told me I would be. I was happy as Larry on these pills, thinking that after a few days I’d be up and about again – back on track. But little did I realise just how much taking these pills would throw my natural approach to rehab off-track. In retrospect, I felt like I should’ve known better.

At the time of the initial injury my GP (who I no longer see) prescribed me with morphine-based pain-killers and anti-inflammatory medications to numb the pain. I was on these medications for about 9 months before the first surgery. Anyone who has ever had a major surgery will understand the effects of painkillers like Endone and Oxycodone – they are generally prescribed to numb pain initially felt after surgery. Endone is fast-release, designed to provide pain relief for acute aches and pains. Oxycodone, is slow release, keeping the patient pain-free throughout the day.

Throughout the extended period that I was on these meds, I had little energy or appetite for food and I was sedentary most days. My body wasn’t getting the essential nutrients it needed to function, or to heal. When it came time to have surgery I had lost a huge amount of weight – including muscle – and my body was in no state to spend the energy required to recover. My body was at a significant disadvantage from the start.

After my first surgery, everything unfolded very slowly. For the first three weeks, I was so weak that I couldn’t shower, go to the bathroom, dress myself or even get out of bed without assistance. And that was even before deep vein thrombosis (DVT) developed in my right leg. The DVT meant that I had to stay sedentary for up to six weeks, putting recovery for my back injury on the back-burner. So I continued on a plateaued trajectory of improvement for several month. I remained on opiate pain-killers for about 6 months after the surgery, and looking back, not only did my body suffer physically from malnutrition, but I suffered more than I realised from withdrawal systems when I eventually stopped taking them.

The secret to bouncing back so quickly after my most recent surgery, I think, was the conscious change in my approach to natural rehab such as physio and Pilates.  Until recently, I had undertaken numerous years of movement therapy by conducting movements repetitively without any awareness of the connection between my brain and the recruiting muscle.  This turned out to have huge ramifications,  for example, every rotation in a pedal stroke when I was cycling was unconscious, habitual, and as it turns out, bad for my body. I suffered numerous injuries whilst training on the bike as a result of unconscious movement. However, a radical change occurred mid-last year when I became a student of Feldenkrais. 

Feldenkrais is a methodology based on building kinaesthetic awareness. Through building awareness of the relationship between mind and body, the idea is that once becomes conscious of the discreet purpose of each movement. For example, conscious awareness of the muscles recruited for every pedal stroke on the bicycle, or each step taken on a walk.  

“Feldenkrais is a methodology based on building kinaesthetic awareness. Through building awareness of the relationship between mind and body, the idea is that one becomes conscious of the discreet purpose of each movement. For example, conscious awareness of the muscles recruited for every pedal stroke, or each step taken.”

While trying to manage the chronic pain from the most recent back injury, the biggest improvements in my strength and movement occurred when I started learning the core teaching of awareness through movement through Feldenkrais. Developing an ability to connect with, talk and listen to, parts of my body, has become key to both managing pain as well as rectifying the poor movement patterns that I developed from the initial injury.

In the book ‘The Brain’s Way of Healing’ by Norman Doidge, he discusses the principals of Feldenkrais, one being that awareness of movement is key to improving movement:

“The sensory system, Feldenkrais pointed out, is intimately related to the movement system, not separate from it. Sensation’s purpose is to orient, guide, help control, coordinate, and assess the success of a movement. The kinaesthetic sense plays a key role in assessing the success of a movement and gives immediate sensory feedback about where the body and limbs are in space. Awareness of movement is the fundamental basis of Feldenkrais’s method…”

Depletion of the sensory systems are accepted as a side effect of muscle relaxants seemingly without proper consideration of the impact this could have on long-term recovery. During the five weeks in which I was taking the muscle relaxant medications (on top of a low dosage of slow release pain killers), I was barely aware of the time, let alone the day, whether I had showered (or how long since I’d last showered), and not to mention the incessant symptoms of depression and anxiety I experienced. There was no way I was capable of conscious movement during this time. In fact, it’s only now at week nine that I am beginning to re-establish a basic awareness of my movement.

LEFT: @caityleidoscope: “This is me in a storm water drain. Also I read something great today:
” Physical fitness is the first requisite of happiness. Our interpretation of physical fitness is the attainment and maintenance of a uniformly developed body with a sound mind – fully capable of naturally, easily, and satisfactorily performing our many and varied daily tasks with spontaneous zest an
d pleasure. To achieve the highest accomplishments within the scope of our capabilities in all walks of life we must constantly strive to acquire strong, healthy bodies and develop our minds to the limit of our ability.” — Joseph Pilates”

It wasn’t just the loss of awareness that caused my set-back. In fact, this was only a minor side effect.

Taking ‘Back’ Wellbeing

This being my first post, it will probably a long one, but the most important as hopefully it explains what inspired me to start it in the first place. Aside from my lame enjoyment of a good pun, I have named this blog ‘Taking ‘Back’ Wellbeing’ as it is about just that – how I choose to take back my  health and wellbeing in every day life, despite the challenges I have faced.

I’ve come to understand that my story is unique for a number of reasons. Not many people have had two spinal surgeries, and even less have had two by the time they’re thirty. I’ve also come to realise recently that my condition is pretty rare to health professionals, as many of the practitioners and specialists I see are used to seeing patients in their 60-80’s with injuries like mine. I was once told by a surgeon that if he didn’t know me, he would’ve thought the MRI of my spine belonged to an overweight removalist in his 40’s. I’ve come to know this man in his 40’s quite well over the years when my body is complaining and I find myself lying on my back in pain. This guy – who I’ve fondly named Eugene – with his mullet and a good sense of humour – has become my alter ego.

Thanks to Eugene’s “she’ll be right, mate” approach, I have managed to pursue a healthy and active lifestyle, despite my injuries. Following my first surgery, in 2013 I took up cycling to increase my aerobic fitness. Within a year Eugene ended up with a cycling coach, training 6 days per week for the development squad of an elite women’s road cycling race team. Prior to my first surgery, I’d never identified myself as someone with any kind of sporting ability. I played sports socially and was usually the class clown in dance class, netball or soccer. When I was 7 my mum signed me up to the school netball team. They assigned me wing defence (perhaps due to my excessively long arms), and I stood on the court counting the number of red cars passing… that is how interested I was in sports. Nobody threw the ball to me and I never really tried to catch it. Until one day when Miss Centre threw the ball with gusto directly at my head – to this day I still believe it was intentional. I wouldn’t play netball for many years after that.

First summit of Mt.Hotham with BOSS Racing Team in 2014. This was a huge achievement for me (and Eugene) after the first surgery.

But here I was, Eugene, a 28-year-old woman who others referred to as an “athlete”. I had overcome all odds to become a ‘Sporty Spice’, and for me this was a big deal. I love cycling for everything that it has shown me. Through cycling I experienced empowerment, self-discipline, self-love and respect, the feeling of setting a tough goal for myself and the rush you get when you achieve it. These were things that I had only loosely experienced in the past.  In recent years the skills I’ve learned through cycling have transferred into my injury rehab and management practices, and are what I consider to be the essential ingredient to managing an injury like mine, so that I can live an active and fulfilled life. I accept that there are some things I should not do if I want my spine to last the test of time, but I refuse to let my injury and my pain dictate my life, my pursuits and my experiences.

I am writing this propped up in a bed at my mother’s house on extended leave from work without much of a social life, recovering from my second spinal surgery in 5 years. This is the second time in my life that I have had to tap out of everything from work, social life, relationship, dreams, plans, travel – you name it. For now, everything is on hold. This is the second time in my life that everything in my day is about pain, sleeping, eating and recovering. Because that is all my body can handle.

At the finish line of the 2014 ACT Hill Climbing Championships after winning a silver medal in the Elite Women’s Classification 

More so than last time around, this surgery has been a really tough pill to swallow. I haven’t ridden my bike for almost a year now due to the chronic pain, let alone compete or train like I was. Cycling was half of my social life, and for the last year this has also been taken away from me. I’ve been forced out of doing the things I love – it bites the big one. They say that writing down your experience is a great way to help you heal, and I really feel like I need that this time around. So  after much encouragement from friends, this blog is my journal of healing. And maybe, someone reading this will take something from my journey that helps them with theirs.

‘Back’ to the beginning…

This all began seven years ago, in 2009 when I was involved in a car accident. I was t-boned on the drivers’ side, right between the front and back door. The impact lifted my seat out of place and my pelvis went with it.  My car was thrown to the opposite side of the road, in a 180-degree spin. I remember having my hair tied in a bun and the force of the impact caused my hair to come untied, throwing my hair-tie out the open window and onto the road. I remember this really surprising me, given how difficult it is to remove a hair-tie without using hands. I always think of this when I am trying to explain the severity of the impact.

I walked away from the accident feeling fine. I was a waitress at the time, working three labour intensive jobs and in my last year of study at uni. At first I noticed a tightness in my left calf and just thought I was overdoing it. But the tightness gradually intensified into stabbing pains behind my knee. After about eight months, the pain was so intense that I had been forced to resign from all three of my jobs.

Because of my young age – I was 23 years old at the time – doctors and specialists seemed to dismiss what could actually be the problem. At this point in my life, I wasn’t Eugene. Like most people, I knew nothing about my body or anatomy, and still passed off my car accident was no big deal, which probably didn’t help with diagnosing the problem.

It took 14 months to discover the injury in my leg was due to significantly bulged discs in my L5/S1 and L4/5 vertebrae. The discs were crushing my sciatic nerve to the left side, so much so, that by this stage I had lost the feeling in my left foot, and the back of my left leg from the calf up to the buttock. I could have held a flaming cigarette lighter on my skin and I would not have felt a thing.

 

Graduation day in November 2010. It hurt like hell to wear high heals with a spine injury, but I was determined to be just like everyone else.

I saw a number of Canberra surgeons and they all found that removing the L5/S1 disc completely and fusing the spine together was the only possible solution. They also advised against having this procedure, telling me that I was better off with the quality of life that I had – in my early 20’s, unable to work, unable to drive a car, unable to socialise, let alone have a relationship, start my career or travel the world.

I knew that this quality of life wasn’t for me. I didn’t want to spend the rest of my life in pain and unable to work, but I didn’t know who to turn to. I felt like I had taken my health for granted and now I would never have the chance to make up for it, and for this I felt ashamed. I was so desperate not to accept that this was my fate, that I made a deal with myself: “If I ever make it out of this mess, I will never take my health for granted again.”

“if I ever make it out of this mess, I will never take my health for granted again.”

As someone who had little experience dealing with the medical world, it took me a really long time to realise that, at the end of the day, a surgeon or doctor or anyone could give me advice, but any decision was ultimately my own. I sought second, third and fourth opinions until I came across a surgeon, Dr Ashish Diwan at St. George Private Hospital, Sydney.  Dr Diwan suggested operating without fusing my spine, with a procedure called a microdiscectomy.

I had a microdiscectomy in February 2011, almost exactly 2 years after the car accident.  The surgeon shaved off the part of the disc that was on the nerve, relieving the compression, and leaving the remainder of the disc intact. The remaining disc is obviously smaller and will struggle over time to take the weight of the vertebrae above it, but the aim of the procedure is leave as much of the natural anatomy as possible.

Releasing the pressure off the nerve meant that after 12 months, the nerve roots that had deteriorated causing the numbness in my left leg begun to grow back again. It started as pins and needles in my toes and calf, and after about a year I had full feeling and was able to press start on my life again.

The delay caused by consultations with surgeons meant that, by the time I found Dr Diwan I had lost complete control of several major muscles in my left leg. I still struggle to recruit these muscles to this day.

As a result of an undiagnosed genetic predisposition, the first surgery also resulted in deep vein thrombosis (DVT) in my right leg. This meant that I had to undergo months of treatment and spend longer immobile in bed. The DVT drew my recovery out from 8 weeks to 6 months.

I went through some of the darkest times of my life pushing through the  rehabilitation to return to normal life again. Injury, pain and rehabilitation is a burden. A constant daily struggle with your body and your mind – how to ignore pain, embrace pain and how to stop it. It’s a constant process of self-care in every minute of the day. None of it was easy. Add the symptoms of pain relief medication to that, and it was a tough three years.

A few hours after Surgery two in October 2016. I’m learning to revel in the silver linings of these difficult situation. There is always a positive if you are willing to look deep enough.

Whenever my body has forced me to ‘press pause’ on my life, like this very moment as I recovery from surgery number two, I find myself reflecting. Thinking about how this all started, what could’ve been if I didn’t have a back injury, reminding myself what I have and how lucky I am, and what’s next. Each time I come to the same conclusion – the car accident challenged me in ways that I could never have imagined. It forced me to grow up before I was ready.

It was one of the worst, but absolutely certainly one of the best things that has ever happened to me. It has molded me into the person I am and I have no regrets about it at all.