M.E. diary

Bank Holiday Weekend

I’m sitting in bed writing this. Its 11am and I’ve managed to keep up with all the days/nights out all weekend by mainly doing just this.

Jon and Bruce arrived at around 6.30pm on Thursday and by resting all day, on and off, i managed to get all the beds made up, hoover and dust, and make an amazing curry. As I’m writing this I’m thinking ‘who’s going to be interested in whether you hoovered and dusted’ but for me, because of my ME, its MASSIVE! I wasn’t sure id be able to to get it all done but i managed by sorting jobs into order of importance (and leaving any that werent absolutely necessary out) then work through the list doing one job, resting for an hour or so then tackle another one and, because id rested for the whole day before (forced on me because id been an idiot the day before), i got through them all.

Ginny came round for dinner, Jakey joined us and we all sat outside eating and drinking (quite a lot) in front of the Chimnea til about 11pm then bed. I slept well – lovely to have Jon home for a while. In fact I slept really well, sharing my bed with Jon, which i have a reason for noting here  …… because of my ME I find it hard to sleep in the same bed as someone else –  i need a really good nights, undisturbed, sleep because if I’m not sleeping well i feel that i don’t get my energy levels renewed and it takes very little to exhaust me the next day. Im still using Dosulepin, however i am starting to feel sleepy without it which has been unheard of for months. Exhaustion does not equal sleepiness!

Friday i stayed in bed and worked gently for a while and there’s nothing much to say about Friday except that i took it easy all day.

The guys went out that evening because (for one thing) i didn’t want to overdo things before the weekend had really started but im sure they wanted a boys night out anyway. I dropped them off in town, came home and went to bed to relax until they’d had enough and rang to get picked up. The call came at 11pm (shocked!)  and we all had an early night.

We woke up earlyish and had a lazy morning in bed then Jon and i went to Oasis and we walked along the wall to Weymouth, sat on The Groin by Lodmoor Country Park and looked out to sea. It was lovely, really chilled and relaxing. It was amazing to realise that id walked all that way without any pain in my hips. Leahs sports massage techniques have really worked wonders. The best, and most encouraging, part though was that I also remembered the last time we did that walk – it must have been about 6 or 7 months ago. We did it the other way, parked in Weymouth by the Pier Bandstand and walked to Oasis. I don’t know how i got there. I felt so ill and tired about half way along. We had a coffee and had to sit there in the sun for an hour or two before i felt well enough to walk back. Jon was going to go and fetch the car but ( i don’t think i told him this) i felt so ill i didn’t want to be left on my own so somehow, very slowly, step by slow painful step, i made it back to the car. I just cant get over the difference in my health – it really is wonderful and totally amazing!!

We popped into Morrisons on the way back to the house and then Jon and Bruce went to pick up Pete (who has broken his leg) and take him to the music shop in Dorchester so that Jon could try out amps for the new love of his life (LesPaul guitar). They all came back for very late lunch/tea on the bridge (Bruce and Pete, who both have a fear of green things, came with fish and chips). Ginny came and Jake joined us again.  It was odd to have 2 sets of crutches at the same table and quite funny how longingly Bruce was looking at the (what he thought was going to just consist of green things but he knows better now) ‘salad’.

Saturday night killed us all (3pm a lot of bands and quite a lot of dancing) so i didn’t feel that i was the odd one out on Sunday because we were all exhausted. Jon went to see his daughter and I put the pork joint in the oven, on a low heat, and went back to bed. Once id got rid of my headache i managed to have a couple more hours sleep, got up at 2.45 and finished off lunch which we ate out on the bridge again. When i say ate – Jon finished his but i only managed about a third of mine and Bruce only half. Jake arrived home with his friend Lara to eat a late Sunday lunch, have a few drinks and get ready to go out. Bruce went to bed at about 7pm and i went to bed for an hour as the plan was when Jon got back from watching his daughter dancing in the Lady Gaga act on the beach, we would do to the Compasses for a drink. By the time he came home i was comfy and settled and we decided that we were both too tired to go out so spent a cosy evening watching TV in bed. I moved down to Jadeys room at about 11.  I slept so well that Jake and Lara didn’t even wake me up (apart from a few seconds when they first got back and i went straight back to sleep) when they came in at 2.30am.

So here i am, just a tiny bit tired, listening to the thunder and hoping that its just clearing the air and bringing the sun back out for our late lunch at Oasis.

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