I’ve got a big weekend planned. Well, it’s probably not that big a deal for most people, but for me it’s way more than I should be doing. Starting tonight I am heading to Brighton where I will meet lots of people that I have been talking to on twitter and then we are planning to spend a day discussing politics, political engagement and other quite interesting things.
It doesn’t seem like much effort, does it. But Ihave to carefully plan how this will work. To start with, I have all my preparations. I will spend this afternoon collecting medicine from the pharmacy to make sure I don’t run out, packing all the equipment that I need to fit on my bike, re-wiring the satnav power connector on my bike, finding time to squeeze in a shower, draining in itself, and fitting in a visit to the doctor which has been planned for weeks. After all that, I am going to spend three hours riding my motorbike to Brighton. I will be fine on the motorbike as it isn’t that tiring at the time. That pain will come later, which is why I am travelling today – so that I can spend Friday recovering from the preperations and travelling. Fortunately I have somewhere to stay and rest. (Thanks @QOFE!)
Then I’m hoping to meet some twitter friends on Friday afternoon / evening, and get an early night (Hah!) before spending Saturday and Sunday with interesting people and discussions. I suspect that I will end up travelling home on Monday because I will have run out of energy by the end of the weekend.
After all of that, I am fairly sure that I will not be moving much from my bed for a few days afterwards. I know this because after ten years of illness I can judge how much energy I can expend without going too far. As I explained in my page about M.E, there is a vastly disproportionate payback for any energy that I do use, and I am certain that I am going to use way more energy than is sensible this weekend. This is my choice – for the sake of joining in with others and having just a little bit of a normal life, I am making a deliberate choice to overdo it and to crash next week. This is what people don’t see when they say stupid things like “but you don’t look sick!” or “You’re looking well.” This is what the DWP, ATOS and the work capability assesments don’t take into account. Yes, I can look normal, for a little while. I can do some normal things, to some extent. But afterwards I will pay. I will pay a lot more than any healthy person might expect. Imagine if every time you went away for a weekend, you have a week off work with the flu, so severe that you are rendered helpless, and you might start to understand just a little bit. I don’t have to do this, of course. I could stay here, split my time between resting in bed and sitting in a chair, maybe a small trip to the shops. I could choose not to see any friends, and preserve the tiny bit of energy that I have.
This is my choice – I will push myself for the next four days. I will damage myself and I will be helpless and in pain afterwards. But I happen to think that it will be worth it.