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.

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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.