My pain, ever present, has become like an entity in its own right, rather like one of Philip Pullman’s dæmons from the His Dark Materials trilogy. A physical manifestation of aspects of the individual’s being that is connected by an invisible virtual umbilicus. It has personality and assumes the role of a(n unwelcome) companion. One assumes that pain is something one has a right to be free of, that the doctors can and will take it away. This is incorrect.
It is part of me now, this pain, so much so that I cannot imagine a day without it. Sometimes I fantasize about an equine sized syringe brimming with soothing anaesthetic sinking deep into my spine, my thigh, my calf, my foot, bringing welcome relief. But my pain now defines me, shapes me and goads me like the proverbial demon on my shoulder, whispering to me, stabbing and burning me. In blacker moods I wonder how much more I can take.
My pain dæmon needs to be cared for. Never be too hard on it, let it rest, entertain and distract it. Sometimes my anger and frustration gets the better of my judgment and I can’t resist the urge to poke the monster with a stick. I shall name my pain Vyvyan, in honour of the Young Ones.
You may have picked up on the fact that I’ve not been having a particularly good time since my last blog, and indeed my cycling has had a severe set-back from my worsening symptoms. The racing and training have been put on hold for a while and my “easier” riding has also been affected. Normally, as I’ve previously described, cycling helps my symptoms, but over the last few months there have been episodes when even just gently pushing down a pedal has been agony from the sole of my foot to the base of my spine to the point of distracting. “Dead leg” has also been an issue.
I’ve speculated that this severe series of flare ups was stimulated by generally trying too hard to be “normal”. The desire to be independent, to try and do more stuff around the house and garden, the determination to attend as many coaching sessions as possible, the hanging around at the beginning of races and, worse still, when races are paused to clear up crash debris, may all have ganged up on me. Or it could be just coincidence. Who knows?
I visited my G.P. yesterday to find out the results of my latest M.R.I. scan. The outcome left me feeling half relieved and half disappointed. I felt relieved because my spine is apparently not unstable to the point of necessitating spinal fusion but disappointed because I would have loved to hear “we’ve pinpointed the problem and now we can fix you”. Instead I learned that my spine was relatively stable with little change from two years ago. Suggesting, once again, that my worsening symptoms are due to a neurological condition that was originally triggered by changes in my spine, but is now deteriorating independently of my spinal degeneration. The only new thing to turn up on the radiologist’s report was “florid fibrovascular endplate changes”. My G.P. couldn’t tell me much about this and my Google searches have so far only turned up references to bone marrow and degeneration, so if any medical professionals out there can explain more to me, I’d like to hear from you.
So what are my options now?:
- Increase my Oramorph. This is helping a bit but I still refuse to take it every day because of the side effects.
- Try Amitryptiline in a low, nerve pain relieving, dose of 10 – 60mg a day. Higher dosages were used to treat depression before SSRIs. Well I’ve tried it and it doesn’t work for me.
- Find a research programme testing new pain relief methods. I’ve been searching but location has been a problem so far.
- Opt for spinal fusion in the hope that it might help, but there’s no guarantees, the outcome is too uncertain, the risks are too high, the recovery too long and the restriction on movement is too great a sacrifice.
- Enter a residential pain management programme. Erm… the jury is still out on that one.
- Continue to get on with life…..
Unless there is a dramatic change in my circumstances (e.g. massive improvement or deterioration, further surgery or participation in a research project or residential pain management course) I will not post another blog about chronic pain and spinal degeneration. I believe I’ve covered the topic of living with this condition quite thoroughly so far and more medically detailed information should be sought from a medical professional. I’m not qualified to discuss the science of pain in detail, I just describe it from the pointy end. Basically, I’ve already moaned and whined far too much.
On the bright side, I’ve been able to get out on my bike more in the last week or so. More about that soon.