Finally the letter from my Consultant arrived and my GP would finally prescribe the new meds I needed to start phase 1 of our plan to try and beef up my pain relief. That was nearly a week ago so thought I'd take stock of where I am so I have a reference point further down the line.
It went very smoothly, the two co-dydramol three times a day and two co-codamol at night were replaced with two paracetamol, effectively removing all codeine from the arsenal. My morphine MST has increased from 40mg to 45mg. I had been expecting horrible codeine withdrawal but nothing. Indeed I felt better in myself, some of the 'fog' seemed to have lifted. This was going to be easier than I could have hoped!
Unfortunately it became apparent very quickly that the pain relief wasn't as good. My baseline pain is worse, the stabbing pains more potent, the burning pain hotter. They are more naggy generally, stiffer and it is even harder to move than ever. As I type this I had my first bath in a week a few hours ago. I didn't want to but there is only so long you can put up with that yucky feeling when you haven't washed properly for days. I felt 104 trying to get up the stairs, getting on and off the bath lift was exhausting and even Eric's most gentle drying could have easily have been red hot pokers running up and down the legs. Before I go further it is important to explain that what I describe is based on what I have been like on the old meds. We are going from a very poor base to something even worse.
Everything came to a head yesterday. I felt unbelievably awful, don't think I have ever felt that bad. Death would have been a very happy release and that isn't meant flippantly. I was uncontrollably hot, my legs had fallen off the scale and disappeared into a dark abyss of hell. I was exhausted, felt physically sick, couldn't move at all, head was about to explode. It was utter hell. Was this withdrawal? Was it the resultant state I would be in as a result of changing the meds? Had the morphine not built up but the codeine gone? Of course it was utterly impossible to know just why I felt that bad. I resisted the Oramorph - after all if I didn't know whether the morphine was causing the problems, adding more would just make it worse. So as always I sat it out and thankfully I started to feel a bit better once all the meds were on board. It was scary and I know I panicked when I felt at my worst. There was nothing I could do, we had to continue with the new regime, regardless of what it was doing and may do that may be worse.
Well I am writing this so things must have got better? Yes and no. I feel nowhere near as bad as yesterday so whatever it was it isn't getting worse. Hooray! However as I have already said the pain relief is worse so life is tougher. But hey, life is always tough, so what's a bit more? One thing is for sure, there is no turning back, so in another week phase 2 begins with more changes. Who knows what the outcome will be, what side effects, withdrawal etc I'll suffer. I just hope that in the end the overall effect is an improved handle on the pain with Oramorph there for when I really need it, not just another thing I take each day.
So, forward we go into the unknown that is a major shift in medications. Fingers crossed it will all be worth it....