This has been a tough few days. I’m really starting to feel the lack of energy that I knew was coming, but even though I’ve known for months this is what would happen… when it comes it’s never going to be good news, and I don’t know how steep the curve downwards is becoming.
I had a good day a couple of days ago with a nice lunch out in the camper van with some friends, but a couple of hours of that left me pretty much drained for the rest of the day, and sleeping has become more difficult.
The steroids I’ve been taking have been having some effect in terms of reducing the pain that I get, but they have side effects – I’m prone to hiccups (as already described), and an addition feeling really weak physically as well as mentally.
Yesterday the camper needed a couple of things doing to it before it would be good to go, so we changed the oil (between T and me) and torque-tightened a last bolt that needed to be completed for it to be all ready to go, plus checked everything over. All good. And then an hour was needed lying down to recover from that exersion.
I feel beaten. I’ve already laid down on the sofa this morning in an “I can’t talk to anyone or think about anything” way for an hour. But I’m not giving up. And we are going to go on the trip to Scotland, but it won’t look like the other trips we’ve taken – much easier with much less happening – and I will be taking it very easy as a result. Once more, T will be taking on the majority of the work, looking after me and being the stalwart that she is. I’ve always known she’s amazing, but she’s showing me more of that every day with her care, kindness and compassion for me with every interaction we have.
There are hopefully some medication changes which may help a little, but I know I’m getting down towards the end of the list of options. And I know what lies at the end of the list. It’s been nearly 5 months, so I guess I’ve beaten the curve, but you always want more, don’t you? It’s human nature. Especially when you’re in an otherwise wonderful place, with someone you want to spend another 20 years with.
