We have pain and that pain is usually a sign that
something’s wrong so we act on it. If we have an injury we go to the Emergency
Department, if not we take painkillers and go to the GP. We do what we can to
make the pain go away and usually it does. An injury heals, and a migraine goes
away and surgeons take your appendix out and it’s all fixed. Yet, sometimes it
isn’t.
I started experiencing pain when I was 11 years old after a
back injury took me out of my last weeks of primary school. I somersaulted over
a high jump bar onto a crash mat and landed awkwardly. I heard something crack
and felt a burning sensation in my back, between my shoulder blades. My
instincts told me not to move, but when I didn’t, a school mate grabbed my
right arm and tried to pull me up. The pain became a hot searing sensation.
After x-rays it was discovered that I had broken a vertebrae and cracked the
one underneath squashing the disc in between. I didn’t really understand the
injury to be honest and just wanted to be up and out of bed as quickly as
possible. I had to lie still in hospital and then I returned home to
recuperate, by the autumn I was at secondary school and could mainly forget
about it. Then it started to ‘niggle’ with little aches and pains in my upper
back and a tightening of the muscles around my injury, particularly the
trapezius muscles. I started to find front crawl difficult when swimming, then
I couldn’t serve at tennis, or ride a horse for any length of time, without
moderate pain in the back which radiated out from the shoulder blades into the
neck and even the lower back. I sometimes spent time off school and despite
trying several treatments including osteopaths, chiropractors, and
physiotherapy but nothing really solved the problem for long.
Years later I was diagnosed with MS and pain seemed to be
part of the pattern of my disease, with neck spasm and back pain signalling a
relapse every time. A few years later when caring for my husband who had MS, I
injured my lower back when moving and handling. This time the pain was instant
and overwhelming. The pain was so bad I dropped to the floor and a doctor had
to come out to give me an injection in my lower back. This caused some bulging
in the discs of my lower back, but no permanent compression to the nerves of
the spinal cord once the swelling had subsided.
More recently, my pain became unbearable. I have been seeing
a pain clinic for around 3 years now and have seen my pain meds escalate to
become a cocktail of nerve blocking medications such as pre-gablin,
amitriptyline, and phenytoin plus ordinary paracetamol , controlled release
morphine and oramorph where necessary. I also take drugs that reduce muscle
spasm such as baclofen and diazepam. Most recently, after a long consultation,
the pain consultant prescribed a course of injections in my spine around the
neck and lower back for my disc degeneration and neuropathy, and a couple in
the middle for the pain associated with my original breaks in the vertebrae and
the haemangioma that has formed in the space. I was also invited onto a trial
for nabilone which is an artificial cabinnoid drug; the trial involves taking
the drug for one month and then withdrawing for a month to see if it is
effective. I have now been taking the drug for just over three weeks.
Nabilone has reduced the effects of my pain; I can’t say it
has been reducing the pain exactly, but it has been reducing my reaction to it.
It has had the strange effect of divorcing mind and body so that I was aware
pain was there, but I didn’t give a damn about it. I have been smiling, more
chatty and relaxed about things like prepping for work, cleaning the house and
my appearance. I haven’t been worrying about the illnesses at all and have
probably been a much nicer person to be around. I felt more relaxed and all
those normal things people worry about went away. The best time had been taking
the drug for the first week while on a very relaxed holiday in Wales where I
did simple things like walk the dog, have brunch at a café on the beach and
read all day if I felt like it. With that sort of agenda for each day I never
noticed that the drug was also making me forgetful, sleepy and unable to finish
stories or sometimes even sentences. I didn’t care when I stopped conversation
for the umpteenth time because I’d forgotten the point I’d been trying to make.
It was only on my return that things became difficult. I currently have a heavy
workload; I didn’t notice I was always working but my brother is living with me
and he pointed out that I was working much harder than he thought I did.
Without proper working hours there is nothing to stop me working at night when
I can’t sleep, or sneaking the odd bit of publicising what I do on social media
while I’m meant to be relaxing in front of the TV.
In the last couple of weeks I’ve been struggling to keep up
with my schedule. I volunteer as a counsellor on Mondays, I support a mental
health group on Wednesdays and deliver a well-being programme using creative
writing, and then some Thursdays I do the same. In between there’s my writing,
keeping up with client notes and college work, plus I’m starting my own
business so there’s web design work, publicity to organise and book clubs to
‘plant’. It’s a busy schedule and as I write it down I can clearly see that
it’s a lot for someone without my impairments and disease, but I don’t seem to
recognise it when I’m doing it. With this tight schedule, having a cognitive
impairment due to drugs is the last thing I need. I found myself forgetting
whether I’d replied to emails, or neglecting important tasks because I couldn’t
do anything but sleep once I’d arrived home from my commitments outside. It is unsustainable.
A counsellor can’t be in sessions forgetting the ends of sentences, or
struggling to keep their eyes open. The crux came when I did a little bit of
helping at the Japanese Garden next door and struggled to cope with the orders,
pulling everything together at the same time and also taking new orders or
greeting people in between. Once I’d been distracted from my original task I
was unable to remember anything and had to keep checking and covering my tracks
twice even three times to make sure. It scared me.
So, three days ago, I made the decision to come off the
drug. I hated the mind body split it had caused and the appearance of being a
complete flake. I want to be competent and professional, not slapdash and
causing concern for my clients. Something had to give and until I can get my
head round the mess I’ve made I made the hard decision to come off the drug. I
did this even though I knew the pain would come back and I still haven’t
created a way of dealing with it. Yesterday, the pain returned with a
vengeance, I felt like I had one foot in a bucket of ice cold water and it
ached uncontrollably. I came home from work and laid on the couch feeling
overwhelmed with pain and fatigue. I fell asleep at 3pm and was woken up by my
brother coming in at 5.30pm, then before he’d had chance to talk to me I’d
fallen back to sleep and woke at 7.30pm. I then couldn’t sleep all night, but
hopefully this will improve. What won’t improve is the pain and I can hardly
believe I’ve made a decision to embrace it. I read a book on mindfulness and
pain some time ago and its ideas about dealing with the problem seemed to fit.
I learned to listen to my pain, evaluate it and live alongside it a little. This
was a turning point for me, because I remember the relief of first going to
pain clinic and being told there were lots of options. I remember being happy
that there were all these drugs out there and I could relinquish some
responsibility for a while. Now maybe I was going to have to take some
responsibility back and see what happens.
