Five Years Of Pain Comes With Plenty Of Gain

Dear Audy,

It’s that time of year again…my painiversary. It’s been five years since CRPS completely changed the course that I had planned for my life.

I am not sad. Usually, painiversaries have been days of regret and misery. Not this year.

This year, I am excited. I have come so far since the early days of my illness. I have learnt more about myself than I ever thought I would; I have learnt that the things that I thought psychologically limited me can be broken down and rebuilt in such a way that the whole experience of living seems more enjoyable and less harrowing.

My CRPS began after I attended Derby Day (part of the Melbourne Cup carnival) in 2006. It was the first time that I had ever been to the horse races. I actually won some money, that was nice. I also won a malfunctioning nervous system, that was less nice. The pain began with a sprained ankle that came about from spending a day drinking in impractical high heels…I was rather naive.

Blissfully unaware of the changes that day would bring…

How chronic pain distorted the life of an otherwise happy young woman.

  • Confusion. This began after the ankle seemed to heal normally and then suddenly started shooting me with pain that quickly became constant and agonising. Doctors couldn’t find anything wrong with it and the confusion cloud only became thicker as I searched for an explanation for my chronic pain. Unfortunately, being diagnosed with CRPS (called RSD at the time) is not much of an explanation for anything, it’s more like a guarantee of more confusion to come.
  • A slow reduction of capabilities. Life didn’t stop happening all at once. For a long time, the pain was restricted to the area from just below my right knee to my toes. I kept working, socialising and expecting to get better. My activities at work were adjusted around what I could do and I mostly got around using a pair of crutches.
  • My left hip went bang. It took about a year of crutching around in confusion before my left hip gave out. The pain was mind-blowing. I spent the next few months completely incapacitated whilst I waited for an arthroscopy. This was the end of my days of still being able to go to work. Following the operation, my hip healed, however the pain never stopped flowing. I was in pain from hip to toes on the left side and knee to toes on the right side. I needed a wheelchair to get further than a few metres.
  • With such a restriction on my mobility, I started exploring new ways to occupy my mind. In the beginning, there was no pain in my hands. I played around with some forms of art that I hadn’t visited since school and discovered that when I put my mind to it, I actually have something of a knack for drawing. I also spent a lot of time getting back in touch with my sewing machine, which I hadn’t shown any love since high school.
  • I started blogging and engaging with people using social media. This was a wonderful way to feel connected to the world even though I was stuck at home. During this time, I was living in a tiny, one-bedroom flat near the city. It was on the first floor with no lift, so even getting to the mailbox was a huge challenge. To get anywhere else, somebody needed to help me. Without assistance, I was housebound and spent so many days in a stiff position on the couch that I am surprised I did not turn to stone.
  • Whilst I was waiting to have paid enough health insurance for a ketamine infusion (being touted by my pain specialist as the best chance of recovery), the pain spread further. My hands started to tingle one day. Then, they started to burn. Things were never the same. Along with the loss of hand function, I also suffered a couple of jaw subluxations and extreme pain resulted from these.
  • All of the methods of occupying my mind with creative activities came to a halt with the rising fire in my hands. I could do very little. I was heavily medicated and spent my time waiting for the days to be over. I spent a lot of time grieving, crying, longing and feeling as though the pain would just lead to more pain and then to death. Life was very bleak back then. I felt like I had been put away from the world and would never be able to re-enter it.
  • The ketamine infusion came and went. It was not the solution that my doctor had led me to believe it would be. Things seemed to work and I experience a great amount of relief, however this quickly turned to an increase in pain all over my body after I left the hospital, ten days after I arrived. The specialist ended up dismissing me as a patient when I was still in agony at the follow up appointment, a month later. “CRPS doesn’t spread, I don’t know what’s wrong with you”, is what he told me.
  • Life got very dark for a while. My biggest hope for recovery had only made me worse. Following the extreme pain of coming off the ketamine (and an assorted drugs cocktail), I began to experience the widespread pain associated with central neural sensitisation. Not that I knew that’s what was happening. Back then, I could hardly concentrate thanks to the medication and overwhelming pain itself. I couldn’t retain information that I read, which made it very difficult to educate myself.
  • I started seeing another doctor who seemed to have a modern understanding of pain and sensitisation. I attended inpatient pain rehabilitation and made a lot of progress. Despite my progress, I still had a lot of setbacks and eventually the doctor that had seemed so openminded, closed his mind to the possibility that my pain was as bad as my experience of it. His turnaround in attitude was heartbreaking. He had seemed like my saviour and he turned out to be even nastier than the first doctor that had disregarded me for not fitting into his box of expectations.
  • I spent so many nights unable to sleep due to pain and anxiety. I spent months in a mental fog in which I would cry at least once daily. I couldn’t see a way out of my suffering. The pain seemed to get worse as the weeks went by and there was no light at the end of the tunnel, there was no hope of recovery from the perspective of modern medicine.

  • How a hurt and broken girl finally began to heal.

  • Eventually, I realised that I had two choices; I could give up and suffer forever, or I could keep searching for a way to make life easier. I kept searching. I got off the heavy medications that were making it impossible to take in information, then, I began to read. I read as much as I could about pain, about the brain, about the body and about people in this world that have overcome crises on par with or bigger than my own. The more that I read, the more methods for pain relief and coping that I have at my disposal.
  • I found people online who seemed to be living much more fruitfully than me, even though we had the same diagnosis. I read blogs, found Twitter accounts and made Facebook friends. This online community has been invaluable for me in terms of providing support in dark times and inspiration in hopeful ones.
  • I started seeing a Feldenkrais practitioner. She became an amazing role model for me, having found her way out of her own chronic pain. It was such a different situation to seeing a doctor that has merely read a few books on the topic. My Feldenkrais practitioner understood what I was going through and was able to treat and counsel me effectively. There was no acceptance of the pain being permanent during these sessions, there was simply dealing with what was and discovering what could be.
  • I studied meditation and Buddhism. These have been invaluable tools for me to use on a daily basis. I have made huge progress in understanding my mind and limiting my suffering by doing so. I no longer accept that any level of physical pain needs to result in suffering. I have become proactive about observing my thought processes and learning to stop anxiety cycles before they take hold of me.
  • I saw a couple of doctors and found one that suits me. He’s not overly promising, or judgmental and his support has helped me to find the strength to be in charge of my own recovery. This support has allowed me the freedom to explore methods of coping and healing without the underlying assumption that nothing I do can really make an impact on CRPS. That assumption is nothing but a hindrance.
  • I let go of the idea that CRPS is a permanent condition. Sure, modern medicine might not be able to explain exactly why my nervous system is malfunctioning, but that doesn’t mean that I am simply at the mercy of the glitch. I started to focus on the small achievements as steps toward larger achievements. I learnt to take things day by day, listen to my body and give it what it needs in terms of exercise and nourishment.

  • What life is like, five years on…

    I am improving all the time. I don’t use walking aids anymore. I have drastically reduced the amount of medication that I take, with a progressive plan to cut out the rest. I can read and learn again and I enjoy the benefits of the knowledge that I absorb through this age old practice of writing and reading. I can drive. My capability fluctuates, but this is a huge step up on being stranded without the assistance of others.

    In the next few weeks, I will move into a new home where I can settle down and build a productive existence once more. The prospect of returning to work and study seems possible again, not immediate, but like something I could achieve in the next few years. This new home is the product of good fortune and a caring family, I can take no credit for its existence.

    I have a new perspective on suffering and pain. So much pain is able to be lessened through learning to change our perception of it. I have also greatly reduced my anxiety and stress response to the point that I am less stressed than I was before the whole chronic pain debacle began. I am no longer unhappy on a daily basis, nor do I accept that being unhappy needs to be a permanently inherent part of being in chronic pain.

    I am looking forward to the future. I am looking forward to continue regaining control of my body and to strengthening it. I am looking forward to discovering how much I can accomplish if I simply continue down this path of curiosity and learning. I am excited about the parts of life that seem possible again, such as finally taking that overseas trip that I was planning back then in 2006.

    This isn’t the life that I expected, but really, who has one of those? And who really wants one? That actually sounds pretty boring. I am enjoying all of the wonderful things I am learning because of a seemingly unfortunate situation.

    Chronic pain is a nasty, nasty bitch, but it doesn’t have to be all bad forever. It can actually be a rather useful tool for figuring out what actually matters in this strange existence of ours.

    Love & Reflection,

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  • 4 thoughts on “Five Years Of Pain Comes With Plenty Of Gain

    1. Lisa Tait

      I really appreciated reading your bulleted account of your CRPS journey, especially the first few years. I see many similarities and in fact, I am preparing to write a similar account of my own experiences, as well as a medically-detailed version (insurance stuff) so seeing this in print, so to speak, helps me visualise how helpful my own information will be in such a format.

      It’s interesting that our injuries – both in 2006, too – followed many of the same markers in terms of treatment/lack of, doctor issues, medication issues and learning to work with our own perceptions of suffering as best we are able to.

      It’s also helpful for me to see another who has lessened her burden of stupefying drugs (which often don’t cut the pain much anyway, so what’s their use?!) and found herself able to begin to learn once again. This is a particularly painful note for me as learning has always come blessedly easily for me… now, I struggle with my once impressive memory, find myself unable to really digest a book no matter how light the subject matter at times (once a voracious reader, lover of non-fiction, too) and fearing further education might be a… a failure for me. :S

      But I have been feeling more strongly that my instinct suggesting tapering off certain medications might actually free my mind from the box of forgetfulness and lack of room to learn additional information and recall it at will. It lifts my heart and gives me more hope that these frightening symptoms involving my mind are really limited to the barely-helpful medications and not the CRPS itself!

      And finally, for I’m losing my train of thought, haha – I think the key for most of us seems to lie in finding the right combination of complementary practices – yoga, medidtation, holistic diet, and in your case, Feldenkrais or another similar approach can give more relief and return of function than the usual physio and meds approach.

      I really appreciate this post.

      Thank you for sharing this!

      1. Hayley Cafarella Post author

        Thanks so much for such a thoughtful comment, Lisa. I have met so many people that were either injured or diagnosed in 2006, it really is uncanny! I remember back then that the only people I met who were still living life and able to do things had usually been suffering for about 4+ years. It feels good that at 5 I am starting to head in that direction. Hoping I can even work again one of these days! I hated not being able to read and retain information. In my efforts to get back into reading, I read a lot of simple texts and YA fiction that is easy to digest (with medication, I actually read all of the Twilight books, haha). I just had to accept that if I got to the bottom of the page and couldn’t remember what was on it, then I had to reread it. It was slow going but my brain started to remember how to digest things again. I am about to start cutting back the last of my meds now that I’m settled here, I’m hoping it’s not such a rocky road as with the Lyrica, but don’t want to count my chickens 😛 I definitely agree that the key to coping is in finding a combination of things that suits us, there are so many elements of life effected by the pain that I guess it’s not that surprising that we need a few different areas of focus to get healing happening. I hope that you are doing well! xx

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