strange

Something strange has happened. Three weeks ago I was washed out. I mean like totally no energy. It was the lowest my health has been in probably three years. Two and a half weeks ago we were due to go on a children’s camp. As leaders I may add, not wannabe children. The two don’t go together, do they. My poor husband three weeks was hearing a lot of ‘I can’t go, there’s no point me going, I’ll be useless, I’m so not well I’ll just end up spending all my time in our room’. He dealt with it admirably.

We came to the decision that I would go, but only until Wednesday. That would mean Sunday lunchtime arrival, leaving Wednesday morning. OK. I could do that. I mean obviously I would be useless on camp. I didn’t have the energy to do anything. But not going would be being defeatist, so I’d go, prove I couldn’t do it and then go home.

The Sunday I was not good. A couple of times I had to take myself off because the tears in my eyes were threatening to spill out. I made it through to bedtime. Reassured myself I had two days of camp to get through, and then I could go home.

On Monday I woke up. Early. This appeared to be the pattern for camp, half past five was the latest I woke up. Waking up that early would normally mean a day worse than normal* day. So I woke up early. I rolled my eyes (without having opened them, a skill in itself) at the thought of Just. How. Hard. the day was going to be. I waited for the husband to wake up. Moaned at him a bit. Then decided if I was going to be awake I might as well shower and dress and pretend I wanted to be there. I don’t know if the strange thing happened during the (short) night, or during my shower, but as I dressed I realized I felt ok. That is ok** for me. And there was a little something deep down in me that wanted to be there. I managed to do way more that day than I ever thought possible. Maybe slightly too much, but when you feel you can and you realize you want to, that kinda happens.

By the end of the day I was remembering who doofas really is. Not the ill one, who has a tendency to mope a bit, feeling sorry for herself and all her perceived inabilities. No, the one who loves working with children, who is excited to know that God loves her and who wants others to know this too. It felt good. I felt good. And I still had the energy to carry, on through Tuesday, Wednesday (with a slight wobble), sit back Thursday (I stayed at camp while everyone else trudged off to Alton Towers), Friday and then home on Saturday. And I loved it.

But then comes the being back at home bit. The ‘I’ve used two months of energy in one week so now I’ll suffer for it’ bit. The ‘wasn’t I silly to do all that’ bit. The ‘mope around coz why am I still ill’ bit. I accepted that that was what would happen. It was inevitable.

Do you know what? That bit, it hasn’t come yet. I feel like I should whisper that last sentence in case that bit hears me and remembers it should be here. I am still better than I have been in a long time. I still have more energy than I often do. Not a fully well, healed, restored to normal lever. Still, more than I often do means being on the up. Especially after such a busy week. I’ve still been having naughty afternoon naps, and sometimes a little rest in the mornings. However I have been managing to do more than my norm. At eight o’clock last night I was still going. I made myself sit down, and told the husband he wasn’t to let me do anything else. I think I’ve forgotten how to stop when there’s still energy in the tank. Forgotten how to relax for the fun of it, not because I can’t do anything but.

I’m aware that this bit of up might also have a down. That’s par for the course with CFS/ME, but boy am I enjoying this up.

*normal: that is to say a normal day for me. This is a million miles away from a normal day for someone who is well.

**ok for me: this is probably being at about 50% energy levels etc of someone who is well.