Thursday, May 11, 2006


So it took me until lunchtime to actually get all limbs functional, but functional I got, and then dressed, and then on the right side of a cup of tea, and started shuffling about. It's not been an action-packed day, but I did meander down to the bus stop and get a bus into town, where I got a train timetable and picked up a memory card for a friend and had an ice-cream from Thorntons.

Time was I'd have done those things on my walk into work, now I need a sit-down between each bit and to go home for a sleep afterwards, even on what's been a reasonably good day.

About 3pm I got really knackered. That's another peculiar thing about ME - you feel exhausted straight after doing something, sure, and then you have a rest and feel, not all better, but a little bit better, and then about 24-48 hours later it totally knocks you for six - not just your energy levels but your pain and your movement and your speech and your cognitive abilities and your mood. I think this was me paying for the wheelchair experiments yesterday, trying to mess about propelling it myself and all that. The pattern is commonly referred to as "boom and bust" and people with ME do it a lot, overdo it one day knowing they will pay for it with interest later. It's something I really should avoid doing though. It's okay doing it occasionally, but it's not recommended as a way of life.

There's no way I could have cooked myself dinner in the state I'm in this evening, not even a microwave meal. I drop things and I forget what I'm doing and all sorts, plus the aforementioned cognitive/mood problems mean I probably wouldn't have managed to choose something and eat it. Luckily my mum and stepdad live just a very little way along the road, so I took a slow shuffle to their house and had dinner with my parents. They're great like that - if I'm a wreck they still make sure I get at least one hot meal a day somehow, whether it's eating at theirs, or them coming to mine and heating something up for me, or even as simple as talking me through ordering takeaway food to be delivered to my flat (yes, sometimes I am that out of it). I'm very lucky to have family.

Tucked up in my bed again now, all nice and cosy. It's about 9pm and I've had a little nap, I'll probably stay put in bed with the laptop for the rest of the evening though. There seems little point in getting up and about just to potter around the flat by myself for a couple of hours.

I want to go rollerskating on the promenade along the seafront.

In other news: About a month back one of the tenants in the flat block here earned himself the nickname "Mr Shitty" by crapping himself, getting his crap all over his clothes and hands, smearing it all over the downstairs hallway, creating havoc and shouting a bit, and then tottering off to buy more Special Brew (that last bit he does every morning anyway). Seriously - I was taking photos of the shit-smeared hallway to show my landlord and ended up also taking a photo of this shit-smeared bloke with his carrier bag of cans of cheap booze, I can't imagine who served him in that state. Turned out this guy had faked references to get the flat and all sorts. His family came and cleaned off the mess from the hallway, and there's been repeated dettol, but the smell still emanating from his flat is just something else entirely. However today I learned that he's been served an eviction notice. Maybe now he'll get the help he needs.

- The woman at the bus stop who I ended up having a chat with.
- The assistant in Thorntons who gave me a smidgen more icecream because I said I didn't want a chocolate fudge stick.
- The recently retired chap who lives in one of the flats downstairs and is using his own time and money to try and make the back yard here a bit nicer, buying little plants for the earthy bits and so on.
- The driver who stopped and waved me across the road on my way back to the flat.

And obviously my parents... but my parents are nice to me every day. So is Steve. Often my sister is nice. And my friends. That's not really what the Nice List is about. I know I'm loved. This is more about people who aren't actually part of my life doing things they don't have to do.



MaLiChumpas said...

Hello Mary,

You are such a nice person. It is really pleasant living to feel loved. May you be blessed always.


Mary said...

I'm a lucky person, mostly. Apart from the obvious "having got ME" bit.