‘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.

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Always in the ‘back’ of my mind

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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.

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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.