Hi Gilly,
I’m so glad I was able to help - if not literally with the pain, then at least to reassure you you’re not doing anything reckless or “immoral” by accepting properly prescribed treatment.
Actually, I wasn’t diagnosed that much before you - only 2010 - but with hindsight, I’ve realised I’ve had MS a lot longer, and based on my account, my neuro agrees, although we can’t prove it clinically, because although MRI can distinguish between active and historic lesions, it can’t tell how long the historic ones have been there, so we don’t know if it was two years or 20.
I’ve had pain for years - especially in my feet. I do remember thinking rather sadly that I wasn’t ageing well, and even got as far as being investigated by Rheumatology several years before diagnosis, but as they discharged me with a diagnosis of “wear and tear” and advised me to rest and take ibuprofen, I was lulled into a false sense of security. I managed to convince myself that if it was anything sinister, they certainly would have found it, and if I continued to have problems, it was just me being a wuss.
That all changed about this time of year 2010 (which always makes me a bit nervous about now), when I woke up with completely numb feet. I knew numb feet couldn’t come from “being a wuss”, but when I found I wasn’t slurring or anything, and everything still worked OK - apart from being numb - I still didn’t treat it as particularly urgent. I dismissed that I might have had a stroke, as I seemed “too OK”, so assumed I’d hurt myself somehow, and waited a few days for it to get better by itself (which it didn’t) before booking to see the doctor.
Doctor too thought I’d injured myself (slipped disc), and told me it was very unlikely to be anything sinister - by which I suppose she meant cancerous - although I think MS is quite sinister. But when no slipped disc was found, that was the start of my path to diagnosis. Another eight months did it!
I don’t want to exaggerate my pain, as it isn’t excruciating, and never has been - except when I put my back out as a result of weak muscles, or get the occasional attack (about 15 minutes) of very severe cramp, toe to groin. But with the exception of those, the normal everyday pain is just sufficient to be depressing without being agonising. I think the depressing thing is not the severity, but that it’s always there - never a holiday. I always feel as if I’ve spent all day on my feet in uncomfortable shoes, even when I’ve done nothing but put my feet up! It’s that - and the resistance to treatment - that get me down sometimes.
But my other experience of pain is not mine, but my father’s. He had a rare and terminal form of cancer, which was excruciatingly painful. He was on enough morphine to kill a beginner, by the end - as well as methadone and oxycontin, and amitriptyline, and cocodamol, and goodness knows what else. It would never have occurred to me to describe him as “addicted”, or “dependant”, as it simply wasn’t appropriate to the circumstances. He didn’t take all that stuff for recreation, but because he had to. And he was certainly no coward, so always tried to get by on the least he possibly could, even if it would have killed me outright if I’d taken the same. My dad was a brave man. He wasn’t some junkie for having bottles of liquid morphine all over the house. Horses for courses.
Even such tragedy can have its funny side. It was amusing walking through airport customs and security with bottles and bottles of morphine, which he was too frail to carry himself. I expected to be challenged, but we never were. I don’t know if they could tell he was dying, just by looking at him, or if they have some infallible way of distinguishing prescription medication from bomb-making equipment, but nobody ever asked me what the heck I thought I was doing. It felt quite funny walking through with lethal amounts of morphine - which I made no attempt to conceal - and just waiting for someone to stop me - which they never did. It’s great that a dying man with his family carrying all his paraphernalia aren’t challenged, but I always wondered how they could be so confident we were decent and law-abiding.
Tina
xx