As this started as a blog on wending my way through pain, I should update on what has happened and where I am now. It is encouraging that although I have daily pain, I am way ahead of where I was even six months ago. Which is why my blog has moved towards personal development and general interest rather than the nuts and bolts of pain.
Put plainly, I am stuck with chronic pain – my new pain specialist underlined this last week. Largely because my GP would not refer me for an MRI until, as she put it, “you are dragging your foot on the ground.” There was some wisdom in this because in older patients most MRIs will show abnormalities whether they have back pain or not. Because surgery often doesn't solve pain and can lead to more problems, it is reasonable to avoid it if possible. Unfortunately, in my case, the eventual MRI did show a specific cause: a vertebra had slid badly out of position and was pressing on my spinal chord. This led to my leg collapsing under me so I fell head first into a bathtub in the middle of the night, causing a head injury.
I was in South Africa at the time, saw a neurosurgeon the next day and had surgery within a week, fusing L4-5 vertebrae. This got me out of a wheelchair and walking strongly again. However, the years of increasing pain had rewired my brain to be hypersensitive to pain signals. Unlike many people, I don't have constant pain. Mine is mechanical – I sleep and wake pain-free which is huge. The pain starts as I move or if I have to sit long.
I also have a lot of scar tissue from 2 major abdominal surgeries. In fact, in one three year period I had two major ops which cut me from hip to hip and also two pregnancies, both large babies, one almost 10 lbs. Because of my scar tissue, my abdominal muscles don't work correctly. I had no idea as I heaved children over the front seat of the car, like sacks of potatoes. My back was always exhausted, even in my thirties.
So I ended up with my out-of-line vertebra and poor muscles. Chronic inflammation from undiagnosed celiac disease (the average diagnois time is 10 years!) weakened my ligaments. All of which meant I couldn't exercise my way back to health. All the books say that you should exercise your way through pain to rebuild the back. Seven physios in turn have tried this, assuring me that I will be fine. When I return with my back flared, they say they have never seen anything like this before. Any strong physical treatment has the same effect. I have been signed off by physios, chiros and osteopaths as palliative – that is, keep me comfortable but don't hope for much.
I didn't help myself by refusing narcotics because I was afraid of addiction. No one explained that it is vital to stop the cycle of pain, to prevent the brain rewiring. Where my GP did fail me was not explaining the mechanics of pain and not referring me to a pain clinic even though I repeatedly asked her. When I finally got to my second pain clinic, the specialist immediately suggested an epidural procedure, which will be done very soon. I had been requesting something on those lines for 4 years.
The first pain clinic had never suggested this option, though they had got me maintained on a low dose of tramadol which has helped a lot. I am on 150 mg of extended release tramadol, which is a starter dose for most people. I take it once a day. It doesn't cure the pain, but it raises my pain threshold so I get less and recover faster. Tramadol is an opioid-like drug, with a low addiction rate. It also affects two neurotransmitters, serotonin and noradrenaline, which are involved in pain. I do not find I need to keep increasing my dose, but do find the extended release much better than the 4-6 hour caplets which have a roller coaster effect. The extended release is very even and I feel good on it.
What I can do: walk briskly, cook, move about easily and run up stairs like a goat. I can't sit long, stand in line, go to a movie, volunteer, go to supper at a friend's, walk slowly or play games with my grandchildren. I can only sit at a computer for short periods. Even the iPad is uncomfortable after long. Driving long distances, especially in Britain with all its roundabouts (traffic circles) is very hard and air travel knocks me back for days. All our children live long flights away.
What has worked: tramadol, walking, heat, meditation. On the bad days, my Quick Steps to Cope have been a life saver. Most of all, self-talk. I have realized, and meditation helped, that I have a choice: how I react. It hasn't been easy, and I fall off the wagon periodically, but meditation has taught me that I am not my thoughts. They do not have to run me. So the first thing is not to mind. I don't mean having a Pollyanna smile all the time or fighting myself, which just gives the situation energy. I mean just not minding what my life has become, not comparing myself with others. And never letting myself think that my pain needn't have happened.
I found Mindfulness: an Eight Week Plan for Finding Peace in a Frantic World by Mark Williams and Danny Penman really good, especially as I could download their meditation exercises free. One writer, I can't remember who, said that a thought is an instant with a tail. So right. Meditation taught me to observe my thoughts without judgement, and eventually catch the moment a thought starts in my head, which is harder in real life. And the thought has a tail – all the feelings, judgements, regrets and baggage that turn a flash of an idea into a spiral of worry, remorse, anxiety, you name it. I learned that I don't have to construct the tail.
So I can think: I can't go out for lunch with friends (because I can't sit), without remembering all the wonderful meals I have had, imagining all those I will miss in the future – and the fun they will have without me. Let it go, even better, take a moment to be happy for them. Yesterday, I watched a boat sailing in our harbour. I know just what it feels like, wind, salt spray, motion cutting through the water. Exhilaration. I savoured the memory with the thought that if someone is sailing, then somehow it is being experienced – and that is enough. The quantum link – we are all part of a sea of energy, the sailors on their crest and me in my calm.