To Pain, and Back Again.
This is Chris’ story of developing chronic pain, and helping herself get her life back. She has shared it with us, so that we can share her strength, resilience and determination to live her life again. Thank you, Chris.
My pain story started on 5th July, 2004. Two days prior I had been cleaning the house; vacuuming around, and as I then went to make up a bed felt an odd sensation in my lower back. Not painful, just “not right.” The next day it still felt a bit weird but I went for a long bicycle ride and thought little more of it. When I woke up the next day I was in excruciating pain. It was REALLY hard to manoeuvre myself out of bed and on that first morning I could only make 90 degree turns to get to around; twisting of any sort brought on intense spasms. It HURT! In fact, I’d never known pain like that before. I was 38.
Before then, I had been a reasonably active person. As a child and adolescent I had performed classical ballet for years, played volleyball and hockey, rowed in the school river regattas, and I loved to go for long walks with my dog. I had worked in office administration for much of my adult life, and then in my early 30s had commenced full-time study in psychology. All in all, it seemed that I had led a pretty “normal” active life.
On that fateful morning, my husband helped me into the car to get me to a GP who I had never seen before (I rarely visited doctors; remember, I’m really healthy, right?!) This guy then starts to examine my spine by prodding all around the painful area. When he hit “the spot” I swore and writhed in agony. The pain was incredible. After prescribing some paracetomol /codeine drugs he told me to go home and rest. I did NOT want to take the painkillers but I did buy some over-the-counter ibuprofen anti-inflammatory drugs. (In my humble opinion, these were useless for treating my pain.)
That first week of pain was a foretaste of how complex and confusing my pain was to become. I took the week off, rested up, and hobbled around when needed. Generally speaking, the pain had reduced slightly but was still very problematic. If I lay down the pain eased considerably but being upright brought on immediate discomfort. So I spent a long time lying down. I was warned to “keep moving;” however, when I did I began to realise that my pain had a “mind of its own.” When I would go for a short walk (a few house lengths and back) I felt great at the time. I’m upright! Moving! Yay! However, a few hours later pain would roar back in like a flood. Not the kind of pain when you overexert yourself and the next day you feel a bit stiff and sore — this was the yucky, angry, soul-sapping pain with which I was to become intimately familiar. I was later told that this type of pain is called “latent” or “hidden” pain. Oh, yay (not). This latency confused me a lot, and heightened my fears. How come it feels so good when I move, but hurts so bad later on — hours or even days later? It just didn’t make sense. I began to condition myself to believing “moving is painful.” But really, it became, “moving is damaging me.” My usual position became LYING DOWN.
Getting on the Medical Merry Go Round
As the pain continued with no sign of abating I then started to worry. “After a few weeks I should be getting better by now,” I thought to myself, and as many others told me. I reasoned then, that something must be Very Wrong. Fear set in big time. Unfortunately, I was already an anxious type of person so I was well and truly primed to know how to ramp up my fears, run terrible futuristic “movie trailers” in my head, and generally make myself a gibbering mess. As a nearly-qualified psychologist you’d have thought I’d have learned how to stop this thinking but I was pathetically poor at doing so. The pain spoke so much louder than reason. And I could not accept that I was now 39, and basically an invalid. Not what I’d signed up for!
Then began what I now call the “medical merry-go-round.” I saw about seven “specialists” to help work out what was going on. MRI results revealed a herniated disk at L5/S1 and a bulging disk at L3/L4 and was told that this was just normal wear-and-tear for someone my age and lifestyle. This information brought me no comfort as I then began to see myself as pathetic. The MRI results did not explain the degree of pain I felt, and I concluded that I was a coward. I now felt sh*t about myself as prior to this time I’d thought that I had good courage. That was all out the window now. My stoic mother (she very rarely has a local anaesthetic when she has fillings at the dentist!) had little patience for me and kept lecturing that I needed to “get moving.” At one stage, she called me a “bloody hypochondriac!” I felt very hurt and invalidated. Amongst other family members, I later found out, I was discussed as being “too sensitive” and “not tough enough.” The invalidation and criticism from them was one of the worst parts of my journey as it reinforced the idea that I was a bit of a princess. Thankfully, I had friends who were much more supportive.
Finally, in November that year, I was referred to a physiotherapist who was to become my saving grace. Luke started me on a gentle exercise rehab program which I was later to learn was based on graded exposure principles. I was up to walking around shops, driving the car, and making meals though still very disabled and spent most of my waking hours reclining on the couch. Everything was going well until he went away for Christmas holidays and my treatment was “managed” by another physio. I had also got too enthusiastic and done too much activity. I was in flare-up — again, a term with which I was to become most familiar. By the time Luke returned from holidays I was back to square one — lying down for nearly all day, every day.
Two Steps Forward, Big Leaps Back
At this point, Luke gave me a brief introduction to the work of David Butler & Lorimer Moseley (“Explain Pain”) and some of the science behind the concept of graded exposure. However, looking back, I had become too frightened to return to any movement beyond what was necessary. And I returned to the medical merry-go-round, getting more and more confused and anxious and thoroughly depressed. I was trialling all sorts of drugs — codeine-based pain meds, anti-epileptic drugs, nerve-dampening pills, and anti-depressants. By this stage, I would allow myself to crawl on my hands and knees to the toilet four times a day (only) and shower every third day, as ANY movement exacerbated the pain. Even breathing hurt. The pain was constant every waking moment. I lived in bed for almost 24 hours of the day. By now, it had been almost 11 months since the injury. I must admit, that for about four months in 2005, I had strong suicidal ideation. My anxiety and the pain were to me, at the time, intolerable. I could not continue to live like this! So, unbeknown to my husband, I procured the means to end my life and was summoning my courage to complete the deed.
Turning Points on the Way Back Up
Around this time a few things happened that resulted in my recovery. The first was the realisation that my pain was “in my head.” (This term I can use easily now but it does annoy me still when uninformed and unthinking people assume that I’m “making up” my pain and, thus, it isn’t real!) One morning I had just woken up and was still in that half-conscious place where things are very fuzzy. I did my usual scan of my back (“how bad will the pain be today?”) and realised at that brief point in time that there was NO pain. And then, within, a second or two of being more fully conscious, the pain kicked in again. Ah hah! I now had some evidence that my brain was making my pain and it was NOT “in” my spine!
The second but most significant thing was of a spiritual nature. Now I’m a reasonably spiritual person, and in June 2005 I decided to spend ten days trying to sort myself out emotionally and spiritually. I spent those days reading devotional books and trying to find “God” in all of this. By the tenth and final day, I had whittled away a lot of my ego and my insistence that I get well. This particular day held a blue sky, wonderfully warming the winter day. It was beautiful. And I remember lying there in bed and clearly saying to God, “Ok, I give up. I give up the right to kill myself. I give up the right that I have to get better. I have no idea why you’re still keeping me alive if I’m just going to lie here for the rest of my life, but there must be a reason. If that’s the way it’s going to be — so be it.” And after that prayer, for the first time in 11 months, I felt tremendous peace. I had let go of any particular outcome.
The Slow but Steady March of Rehab
The next day I re-started my rehab at home. And it worked. It seems so pathetic now but my sole activity was to get out of bed, do one “step-up” exercise on both feet and then go back to bed. The step-up was done on an old Yellow Pages telephone book. The next day I did two step-ups — one set in the morning and one in the afternoon. And that, my friends, is how I crawled myself back to having a reasonably active life. Every day or so I would gradually increase the frequency of an activity; the number of minutes I sat, or the number of seconds I walked. Looking back, the improvement was incredibly slow at the start. Tiny! But I didn’t care. I was thoroughly happy as I was strictly controlling my activity (which decreased the anxiety) and I was getting more active. As the confidence grew in my brain, the graded steps became steeper and so my improvement was faster. A significant part of the recovery journey was the daily rehab exercises Luke had set me; these also increased slowly but steadily over time. After many months being house-bound, I well remember the first trip I took outside. I walked down a bike path and there were people ambling with their dogs, kids running around mums pushing prams, the trees and leaves and grass were green, and it was the best 20 minutes of my life: 10 minutes’ walk from home and 10 minutes to get back home. And so my improvement continued.
Since then I have had two further episodes of being bed-ridden — those were each only four months long. And, while at some level I knew what was going on and how to get better, the pain of these flare-ups was so strong that I panicked and lost sight of the process. These episodes were brought on by significant EMOTIONAL pain rather than physical over-exertions: my brother contracting cancer and subsequently dying, and the betrayal by, and subsequent loss of relationship from, another significant family member. Note to self: Keeping my emotional health is just as important as keeping my physical health.
Loving My Normality
I have recovered to the extent that I am pretty pleased with my abilities. It is nowhere near where it was pre-injury but I’m ok with a somewhat “smaller” life (though in some ways it’s so much richer than if I had not had this happen.) I am “upright” about 12 hours a day; still needing to take breaks to lie down regularly throughout the day. I am now a registered clinical psychologist with a small private practice. I shop, eat out, drive my car, work out at the gym, and generally live life. Still not up to sitting for a feature-length movie at a regular cinema (thank you, Gold Class!) but that’s OK. To date, the highlight of my post-injury life was to work up to travelling (by train) with an understanding friend through northern Italy last year. It was my treat to me for my 50th birthday. (And I sent Luke a photo of me sitting on the steps of a building in Florence with a sign which read, “Thank you, Luke!” Apparently, it made his day.) Back in 2005 I would never have imagined that I could have achieved such a thing. But I did. Patience and perseverance and knowledge and hope got me there.
A huge thanks to Chris for the time and emotional work of writing her story down for us at Pain Talks. Her story, and those of other people who have lived through a pain experience help us to find the ways that we can help people get themselves out of suffering.
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