The Rehabilitation (pt.1)

Thus far, I have been sharing my story and experiences, with the intention of providing a glimmer of hope for somebody, and some reassurance that they are not alone. For anybody reading this who is in a similar situation to the one I once was, it is so important to trust that things can change. If you refuse to believe this, then me sharing my story is simply not enough to help you. Hearing about somebody else’s experience has potential to be extremely valuable. However, over and above anything else, you need to want to help yourself and believe that things can get better.  

Let's go right back to the start to when I initially injured my back, triggering a domino-like onset of symptoms. The earliest treatment I can recall is of basic NHS-provided physiotherapy. Bearing in mind this is going back around 13 years, there is still one clear, stand-out memory I have. This was of a young, newly-qualified physiotherapist feeling extremely overwhelmed and out of her depth. I think the poor girl believed she just had some basic lower back pain to provide stretches for; not quite appreciating the full extent of my condition until she was elbow-deep in my medical history.

Anybody who has ever been injured and received treatment from a physiotherapist will know how the script goes. Assessment; perhaps massage therapy; homework in the form of daily stretches. As a 16 year old who probably thought she knew better, I rarely stuck with the prescribed exercises. I would start off with great intentions, but I wasn’t ever consistent enough for the habit to form. I’m sure most of us have been there! Maybe I was too impatient and wanted to see instant results. Maybe I just didn’t like doing the stretches because they were too painful. Yes, the stretches provoked some pain and discomfort, but this was nothing in comparison to the chronic effects of the tissue not healing properly, which is what can happen when the exercises are not performed.

After some time, I realised that I needed to find a way to hold myself accountable for my recovery. So, I created an Excel spreadsheet and recorded the number of repetitions I had completed for each exercise. As opposed to simply doing the right thing for my own physical well-being, it was actually the jarring feeling of seeing a blank space on this sheet which motivated me to complete the exercises. Was this borderline neurotic? Perhaps. But did it work? Yes, it did. Each week, the average number of repetitions would be calculated to make it easier to notice any progress, regardless of how little that may be. When you physically record what you are doing, you are far more likely to follow through with it. I highly recommend doing something similar to this for anybody who is struggling with consistency for physiotherapy-led exercises.

At 19 years of age, I was referred by my GP to a pain management clinic. I can remember having this dreaded image of a group of 85 year olds, with the sole mission of being able to stand up from a chair unassisted. However, it wasn’t like this at all. I visited my local community hospital and had weekly one-to-one sessions with a very pleasant consultant called Jenny. She provided me with some educational booklets on my suspected diagnoses at the time: joint hypermobility syndrome and fibromyalgia. These were really informative and provided a bit of clarity on what I was dealing with, instead of me attempting to read through the bin fire that is the internet.  

While attending this pain management clinic, I was also given a book to read called ‘Explain Pain' by David Butler and Lorimer Moseley. This was the book which sparked my initial interest in the human body and what happens when things go wrong. It is an extremely interesting and educational book which clarifies how the pain system works, and I thoroughly recommend anyone with an interest in the pain system to give it a read. The book cleverly explains how pain is produced in the brain, reiterating that it is very real, however it can be changed. There is a network of neurons which cause the brain to send pain as an output in response to perceived danger. I used to wish I couldn’t feel pain altogether, but it is there to help you and protect the body from harm. With chronic pain however, the processing and signals just become a bit messed up (strictly medical terminology used in this blog, you see).

It was through this pain management clinic that I was provided with walking sticks to assist with my mobility. I definitely could have handled this situation better, as I can recall having a minor meltdown about it. I felt like the walking sticks reaffirmed how much my condition had deteriorated, and they were a constant visual reminder of this. I remember catching a glimpse of my reflection in a window and thinking that I looked like I should be either climbing a munro or collecting my pension. I wasn’t entirely sure which one of these scenarios I would be happier with. As true as that may have been, this was when I was viewing the sticks purely as how much they were going to restrict me. I had to alter my way of thinking, and appreciate how many more things the walking sticks would allow me to do.

Another big takeaway from this pain management clinic was learning methods to help with sleeping. Managing to fall asleep and actually remain asleep was always a huge challenge for me. It was extremely difficult to relax enough for my body to drift off to dreamland when it was in constant fight or flight mode. The only exception to this was when I was taking a ludicrous cocktail of pain medications which knocked me for six. Usually, the painful sensations would make me restless, desperate to find a position that would provide the most relief. When I did eventually fall asleep, I was frequently awoken with burning nerve pain and muscle spasms.  

The health consequences of chronic sleep deprivation can be pretty terrifying. Your circadian rhythm has strong influences on your level of immunity, digestive system, hormones and stress response. Therefore, dysregulated sleep can wreak havoc on all of these functions. Additionally, many restorative processes occur when sleeping which improve brain health, consolidate memories and process emotions. Cue me massively regretting fighting with my parents over my bed time as a child.

The technique I found the most useful was one called ‘The Military Sleep Method’. Lying back in a (somewhat) comfortable position, you start at your head and focus on each body part, consciously relaxing each muscle. This involves muscles you likely wouldn’t have considered before, such as around your eyelids, ears and jaw. Sometimes it helps to tense these muscles first and then relax them as you exhale. With regular, steady breaths, you work your way down from head to toe. If you are not yet giving it big Zs by the time you reach your feet, you then simply focus on your breath. This worked almost every single time for me.

At this pain management clinic, they took more of a holistic approach to managing my condition, as opposed to doctors who would simply throw medication at me in attempt to mask the pain. The two main techniques they used were cognitive behavioural therapy (CBT) and mindfulness. CBT is a form of talking therapy which allows you to take a step back from your thoughts and feelings. In CBT, you can review the way you think and shift these thoughts in a constructive way. It is intended that these changes will then improve behaviours to allow you to manage potentially stressful situations and avoid any spiralling. Mindfulness is a technique where you focus your attention on the present moment. It involves recognising your thoughts, feelings and sensations in the body and acknowledging these in a non-judgemental manner. I think it would be worthwhile providing more details about these techniques and how effective they can be, so I will elaborate on these therapies in a separate post.

Following a car accident in 2016 which caused a severe flare up of my condition, I tried something called hyperbaric oxygen therapy (HBOT). With HBOT, you are placed inside a chamber and the atmospheric pressure is increased. You are provided with a mask which is hooked up to a machine (I know I’m not selling it right now, but stay with me), allowing you to inhale almost 100% oxygen, and exhale to remove carbon dioxide. The percentage of oxygen in the surrounding air that we breathe is around 21%, but increasing the atmospheric pressure also increases oxygen saturation, allowing this percentage to be higher. The purpose of this treatment is to promote new cell growth and tissue repair through the provision of more purified oxygen. Although the evidence behind the benefits of HBOT is very strong, that does not mean it is for everyone – as I soon found out.

Normally, the autonomic process of breathing is controlled by metabolic changes in the blood. More specifically, due to a drop in oxygen and increase in carbon dioxide levels. This change in gases is detected by chemoreceptors in the blood and acts as a stimulus. A message is then sent to the brain, which instructs the respiratory muscles to contract/relax in order to breathe in and out. When partaking in HBOT, this stimulus is lost, meaning you need to consciously think about breathing. Nobody warned me about this. I also never learned about how this worked until months later while studying acid-base balance in one of my university modules. It turns out, conscious breathing is pretty bloody exhausting.  

If somebody had asked me prior to this experience whether or not I was claustrophobic, I wouldn’t have even considered that as a possibility. Well, I was wrong. After noticing how enclosed the space was, I quickly started feeling like I wasn’t breathing enough. No hyperbole involved, I fully believed that I was suffocating. I began hyperventilating, my throat tightened, my face started tingling, and I was sweating profusely. Before I could process what was happening, tears were spilling over onto my cheeks. Ahh, hello darkness, my old friend. A panic attack; how delightful. I had to continuously remind myself to count for four seconds in and four seconds out for reassurance that I was breathing adequately.

The few other people I shared the chamber with checked up on me as it was clear how much distress I was in. However, due to the atmospheric conditions of the chamber, it wouldn't be easy for me to leave. Staff would be required to drop the pressure, open the chamber and let me out, then close it and increase the pressure again for the others so that they could proceed. This would have removed around twenty minutes from the treatment time of the others, and so they asked if I would be able to persevere. Feeling uncomfortable and a little pressured (ha, pardon the pun), I sucked it up and attempted to distract myself with some celebrity gossip magazine. To my own shock, it managed to see me through until the session was finished, although I reckon I must have read the same paragraph about Jennifer Aniston's love life around forty-seven times.

A recurring theme throughout my rehabilitation journey was that I would often get my hopes up over the potential outcome of a new treatment. It’s completely understandable to feel excited at the thought of your pain being alleviated, but this led to a lot of disappointment and repeatedly being left feeling disheartened. On the plus side, this allowed me to develop a lot of emotional resilience: a very necessary tool when navigating the dating world in your late twenties.

The advice to my younger self would be to take it as it comes. Of course, become intrigued; do your research. However, the road to recovery is far from linear, and there are lessons to be learned in every situation (if you are willing to look for them). The next time something challenges you, do some reflection on it. Ask yourself which skills you need to develop to allow you to better navigate a similar situation if encountered again. Your future self will thank you!

In my next post, I will be covering the details of the residential pain management programme I attended in Bath, England for three weeks. I will also be discussing the 12-week online pain management course I completed during my final year at university. Both were extremely valuable, and so I look forward to sharing my experiences with you soon.    

As always, thank you for reading :)

Much love, Kirsten xox