The Rehabilitation (pt.2)

OK, now we get back on track following the brief interruption detailing the aftermath of my skiing accident. Recent events have confirmed that I am by no means cured. Although of course I experience only a fraction of the pain I used to, when it does flare up from overexerting myself (or sleeping on an uncomfortable bed), this really hits me mentally and emotionally. It is a persistent reminder that Ehler's Danlos Syndrome is something that I will likely need to live with and manage for the rest of my life.

Having a lifelong medical condition is something I always refused to fully accept, but I now realise that many things in life can coexist. I can accept this may be the case, and simultaneously remain optimistic about the future. It does not mean that I am giving up, nor does it mean I will ever stop continually trying to improve. I believe that acceptance in this respect will allow me to fully experience peace. It should also prevent the emotional and mental strain I feel during a pain flare up in future, so I am hopeful that this makes a positive difference.

If you haven’t already read “The Rehabilitation Part 1”, this is your cue to do so, as we will now dive into the next part of my pain management journey. I previously covered the details of the pain clinic I attended at a local hospital. From here, my consultant referred me to a residential programme which was targeted at young adults aged 18-30. As my 21st birthday was approaching at the time of my referral, this was definitely not the kind of 18-30 trip I had envisioned.

This was a 3-week-long pain management programme with some of the best specialists in the country. During this time, I stayed in hospital accommodation at The Royal National Hospital for Rheumatic Diseases in Bath, England. The programme was typically aimed at individuals who were in a slightly worse position than I was. However, my consultant, Jenny, recognised that I had done a lot of work already to improve myself, and so I would be in a really good position to gain a lot of value and benefit from the programme. My mindset was almost there, I just needed that extra push. And an extra push is exactly what I was given.  

It was strongly advised that a family member accompanies you for the first week of the programme for support, and so my lovely mother joined me and helped me through my initial meltdowns. Let me tell you, there were plenty of meltdowns. At times I questioned whether or not I was even capable of completing the course, but I now recognise that these were simply intrusive thoughts.

Having thoughts like the one I just mentioned is completely normal. This is because the main aim of the human body is to survive. In order to do that, it will find ways to avoid placing you in scenarios where the brain feels unsafe. Your brain will scan a situation and assess the risk of danger, sending out signals if there is a perceived threat. It will also take into account your emotions at the time, any expectations of pain and beliefs surrounding pain while processing this information. If you have been living in pain for a long time without moving your body, this is what feels familiar. Whenever you try to do something different from the norm and push yourself, this is new territory. What does your body do as a result? It tells you to stop. This is why it can be so difficult for people to push themselves out of their comfort zone. But familiarity and comfort does not equal benefit, and our bodies are capable of so much more than we often give them credit for.

The limits of my comfort zone were most definitely stretched throughout this pain management programme. I started the journey along with three others, each of us in varying circumstances and with pretty different mindsets. However, there was at least one thing we did all have in common: we were sick and tired of being sick and tired.

We were introduced to everyone on arrival at the hospital, and they reiterated the reason we were there: we had been living with severe chronic pain for a long time and had tried countless things to help, with little to no success. A pretty spot-on summary, I thought to myself. Their objective was not to cure us of all pain, but to teach us ways of living a life as best as we can while the pain may still exist.  

The course involved working with physiotherapists, psychologists and pain specialists, who focused on elements of education, mindfulness and a whole lot of strength and conditioning. For me, the main takeaways were how to make values-led decisions and the importance of moving your body. Previously, I let pain dictate every single decision I made. Whether I felt I was in too much pain to do something important, or I was too worried that doing a certain thing would I missed out on a lot throughout my late teens/early twenties.  

I tried my best to adapt where I could. For example, if I were to attend an all-day wedding, I acknowledged that I would need to lie down and sleep while the evening reception kicked off. Often, I would cancel plans altogether, or refrain from agreeing to any in the first place, as the pain would be intolerable or the task would feel unachievable. However, this programme taught me the difference between making decisions which were led by pain, and those which were led by my values.

In order to make values-led decisions, we first had to identify what our values were. We also had to establish what living in line with them would look like. Sometimes, the outcome would involve doing a similar thing, but a values-led decision would be driven by a shift in mindset. For example, a pain-led decision could be: “I'm in agony and exhausted, I am going to take a nap”. On the other hand, the values-led decision could be: “I want to spend the afternoon with family because this is important to me. To allow myself to have enough energy for this, I will sleep and rest beforehand”. Do you notice the difference?

On one of the days, a doctor was brought in to speak to us about pain medication, both as a group and individually. The main point worth noting was the importance of weighing up the benefits of a drug against any potential side effects. The medications I was prescribed by a physician were extremely strong and were all accompanied by an endless list of possible side effects. Quite often, the side effects were so severe that it negated any good the medication may have been doing. It is therefore of course not worth it, and you should speak to your doctor about altering the dosage or the medication altogether. If you are interested in any further information regarding this, you should read my post called ‘The Drugs’, where I go into much more detail.

Another stand-out moment for me was something I mentioned briefly in a previous blog post with regards to positive thinking. During one of my sessions, I was asked, “what happens when positive thinking isn’t enough?” And it hit me hard. I can remember my chest feeling tight and my temperature rising while I argued my defence. For years, thinking positively about my situation managed to keep me from spiralling into a dark hole of self pity on many occasions. So how could it not work?

This topic brought up a lot of defensiveness and conflicting feelings, however, ultimately they were right. The specialists were very skilled at challenging any limiting beliefs, but in a soft, compassionate manner. While optimism isn’t inherently a bad thing, what we don’t want is toxic positivity. Thinking in this way had only allowed me to come so far. My progress had plateaued because I wasn’t letting myself fully feel and process my thoughts and emotions.  

If you tend to brush things off and suppress how you really feel, you may think this is a good way of dealing with matters. In certain circumstances of immediate danger, this can be a good thing. However, it can only ever be a temporary solution. This may become problematic when we are not fully acknowledging any negative thoughts and feelings, and therefore not processing them. Suppressing isn’t processing! As I’ve mentioned in previous posts, these feelings will find a way to rear their ugly heads at some point later in life.

Another highlight from this programme was one of the last days where I went out a run with one of the physiotherapists. Yes, you read that correctly, a RUN! At the beginning, I had expressed how much I missed being able to run and play football. Although contact sports were not in my realistic future plans, we did a lot of work on strength and conditioning to allow me to run on a grass park by the end of the programme. If you spend any amount of time with me, you won’t be surprised to hear that I cried afterwards, obviously. It felt utterly unachievable even weeks before, and so this liberating feeling of being physically well enough to run came as a surprise and completely overwhelmed me with emotion.

To provide some more context, on the first day of the programme, I was filmed walking up and down a corridor so that my progress could be compared more easily. On the final day of the programme, my walking was filmed once more. We then got to view the two videos simultaneously and the difference was honestly remarkable. My mother and I sat there sobbing and sniffling as we watched what looked like two completely different people. The first video resembled an old, frail woman with zero confidence. In contrast, the second video more closely resembled someone strutting down a cat walk. I'm now wondering if they would still have these videos saved in their records so that I could watch them again!

As helpful as this programme was, specialists like these can only teach you the skills to gain more value from your life. It is ultimately up to you to put the work in, consistently utilising these tools, to make the real difference to your life. Sadly, my recovery was not quite plain-sailing from here. However, I gained a lot of value from it, and I hope you did from reading this also. Stay tuned for my next post where I cover the online programme I completed with ‘The Fibro Guy’, which allowed me to wean myself off of tramadol after 6 and a half years.

Thanks for reading :)

Much love,

Kirsten xox