Having started this blog to journal a path, hopefully, to freedom from pain, I should really fill you in on physical progress – especially now I have solutions.
Coping with pain has been swings and roundabouts: swinging up with hope before crashing down again or going found in circles, getting nowhere. Much of my blog has been the psychological and spiritual journey because how bearable my life is depends so much on how I handle my pain.
When I started the blog, it was on my iPad because I couldn’t sit at a computer and could only manage the iPad for ten minutes at a time. I couldn’t even dust the furniture because the forward movement flared my back. I never thought I would WANT to clean house. I longed to cook, even turn out a cupboard, activities that previously I used to raise my mood. Which is why so much of my blog has been about the psychological side. I had to keep cheerful without any of the normal distractions. Rather like having to get going each day without coffee!
The physical side has been slow. I have tried chiropractic, osteopathy, massage, manual therapy, physiotherapy, and cranial sacral therapy with little result. In fact, just trying each therapy physically set me back, often taking weeks to recover from an assessment. But I always hoped one would work.
I tried to do mwithout narcotics, but now think that was a mistake, as the pain path is deeply drawn and my brain is permanently changed. Perhaps if I had taken meds earlier, the path wouldn’t have been so deeply etched.
Meds were the next step: I can’t take anti-inflammatories because my digestive system is damaged, so my pain specialist (it took 6 years to get referred) tried me on morphine which made me woozy, even when reduced to a child’s dose, and did little for the pain. Next came short-acting Tramadol, an opiod type drug that works on the central nervous system. It was very uneven. a trampoline effect, while all the time I was in a stupefied haze.
I had to plan several hours ahead, guessing when I would need to take it. If I took tramadol at 10.00, the relief would kick in around 12.30 and the high arc of the parabola would give me two hours reliefbefore descending. I would then have to wait till 4.00 before taking another dose. And all the time I felt confused, dulled, afraid to cross a road alone. I was not me, but a dull shadow, missing the spark, humour and joy that makes life worth while. I stumbled, blindfold, unaware.
My GP, bless her, suggested I took a slow release version to iron out the bumps. I had been reluctant because I don’t have pain at night and it seems overkill to medicate 24/7. And I am highly sensitive to drugs, even the lowest doses. I managed to find a compounding pharmacy that would make me up a low dose tramadol in a slow release powder. I tolerated it, but it didn’t do much for the pain. Gradually, we increased the dose till I was on regular zytram SL, a slow release tramadol, which, unlike the compounded version, was very even. Better, but I had almost daily breakthrough pain and couldn’t sit long or write my blog easily.
Meanwhile, the clinic was giving me anaesthetic injections in my back, four each side. Initially, the relief lasted a week, but with subsequent shots quickly tailed off to a few hours. Next came a steroid epidural, a way to get at the inflammation without NSAIDs. It was supposed to kick in after 5 days and last anything from a few weeks to a year. Unlike the other patients, my legs went completely numb and I had to be sent to a ward until I could stand up alone. The initial pain was intense for two weeks before the relief kicked in. That lasted about two months. The second epidural was much more painful. , leaving me lying tear -stained in bed for over two weeks and providing no lasting relief. The pressure built up in my spine, my eyes felt swollen and my sight deteriorated. It has never recovered and I can’t read a newspaper now.
The end of the road for interventions. That left stronger drugs. My zytram was upped and I was told to take the short-acting version as well throughout the day, I was also prescribed nabilone, synthetic marijuane. It was overkill. I felt frighteningly unreal, unsafe on my feet, confused and blurred – and that was before I even tried the marijuana.
“I can’t do this,” I sobbed. I tried hard, because it was not just my life at stake. My limitations impacted us both. Life was not worth living in this state. What gives my life its savour is my keen interest in books, ideas, word play and humour. I would rather have my pain limitations than lose myself.
I pulled back the Zytram and tentatively tried the nabilone. For two weeks it worked, though it was still slightly unreal. Our son and family were due for a visit – perhaps this would give me a chance of coping. Then as it built in my body, the side effects kicked in. My digestion went first: I could eat very little and my stomach felt like large knotted ropes; my sleep was thin and disturbed; and I was miserable as if seeing life through dark glasses. I checked with my pharmacist – they were all listed.
The family visit was approaching like a runaway train – 5 days to go. HOW? I did find answers and am today two months later, doing more and virtually pain-free. How I got the answers is in my next blog entry.