Penguins, Penguins and Penguins

I like penguins. Tonight was Frozen Planet on BBC1, so I got to watch lots of penguins, both King and Adelie (there were no Emperor ones tonight, I noticed). Today I also bought some penguin stuff- a book called 365 Penguins, some penguin wall stickers, and some purple penguin pyjamas (in a size 14, since I’m losing weight without trying now).

Tomorrow I have the doctors. I am worried about going out, and having to sit up so long. I should probably be considering home visits but I don’t want to yet as I’m not that ill, surely? I’m going to be asking about ambulance transport to the hospital, as going by taxi didn’t work that well last time.

Had a bath this evening, and lovely Icelandic carer told me my hair now goes down to my bum :p She also had to support me a lot more than I normally need.

I need to sort out the living room, as it’s frustrating me that it’s so close to tidy but not quite there. It would take Johan a few minutes, but he won’t do it (or he would have done by now) so I’m going to have to do it. Tidying the cushions on the sofa and putting some rubbish in a bag caused my legs to jerk uncontrollably this morning, followed by being unable to move them at all. It’s the closest I’ve been to waking Johan up, as the pain in my foot was excrutiating and I couldn’t move it. Luckily it wasn’t too bad when I woke up this afternoon.

Being Tired

First of all, M.E. is not just about being tired. There’s a lot more to it than that, including pain, muscle weakness,Β over-sensitivity, and lots more. I’m still working (slowly) on a proper blogpost about it. Tiredness is what I’m talking about today, though.

I’m tired. Really tired. All I want to do is sleep, but I did that all day so can’t really now. I woke up when the carer arrived this evening, and was too tired (and in too much pain) to move to even go to the toilet. I was too tired to watch penguins on telly. Too tired to have anything to eat for a couple of hours. This isn’t just normal tiredness, this is complete exhaustion that doesn’t go away no matter how much sleep I get.

On sleep, mine is pretty random now. I sleep for anything from 8-18 hours at a time, then am awake for anything from 8-22 hours. There’s no real rhyme or reason to it. Any attempts to sort it out up to now have failed, mostly because I’m just too ill. When I improve a little bit I’ll be trying to sort it out. Until then I’ll just have to deal with being out of sync with everyone else.

Feeling Weird

Slept from 12.30am – 2.30pmish today. Johan was sitting on the windowsill when I woke up, waiting for his graphics card to arrive. It did so just before 6pm.

I’m doing my own, very vague method of activity management. It basically consists of trying to get up and sit in my computer chair every day, no matter how ill I feel. I’ve managed it every day for a while now, and it’s not making me worse, just means I sleep more. I try and get back off before I start feeling even more bleh, but it means I get to play some World of Warcraft everyday. I made my Worgan Mage Elisaveta into a Gnome called Tiarna. She’s so small and cute, and best of all she doesn’t make any annoying sniffing noises πŸ˜€

I feel weird. The nausea has been worse today, so I’ve been taking the antisickness tablets, which haven’t helped much. My brain has been all over the place, and the pain has been bad even with the painkillers. I “lost” a few hours after waking up just because I felt too rotten to move.

I’ve ordered some stuff from Amazon to be delivered tomorrow, and done a grocery shop with Sainsburys to be delivered on Wednesday. Nothing too amazing, though we have three different types of roast-style meats to try (they were 3 for Β£10). They also do pre-prepared sweet potato and butternut squash, so when they arrive I’m getting Johan to make me my orange soup πŸ˜€

Did get dressed today, in my favourite Diablo 3 t-shirt and a denim skirt. Johan plaited my hair. It’s very loose as he’s not got the hang of keeping hold of all the hair while plaiting it, but it’s not too bad and he’s learning πŸ™‚

A Lack of Sleep

I’ve not been to sleep yet. I woke up about 4.30pm yesterday, and it’s nearly 2pm today. I’m getting tired, and I’m about to sleep, but I was waiting for Johan to wake up to ask him to fill my cup so I could take painkillers. He’s completely zonked though and I think I’m tired enough to sleep without the painkillers now.

During the night I wrote an email to the local carer’s association to ask them to contact Johan about support for him. Hopefully they’ll be able to help. It would be easier if he could initiate contact, but he can’t so we have to work around it. I’m basically trying to care for my carer, and it’s hard. I’ve also noticed I’m still trying to deny how ill I am, though I have accepted that what was a bad day a few months ago is classed as a good day now. A bad day now means no light, touch, sound or anything can be tolerated.

I really need to write that blog post on M.E. Maybe I start it after I’ve got some sleep.

Remember, Remember, the 5th of November…

Fireworks are awesome!

This year I had to watch them from my bed, as I was too ill to go out. It was too cloudy to see the ones from the official display (about a mile away) but someone set some off locally so I got to see those ones. They were pretty πŸ™‚

My sleeping pattern is completely messed up. Woke up about 4.30pm today- it was already dark outside. I’m trying not to worry about it, as it’s probably just because I have a cold and things.

I was featured in TWIM this week πŸ™‚ I never thought I would be, as my blog isn’t really about mental health issues (more autism and M.E.), but I’m happy anyway.Β 

Johan’s killed his graphics card by keeping the side off his computer. I told him to put it on because of the noise, but no- he knows better. It was completely clogged full of dust, and even cleaning it out it seems to be permenently damaged. I spent Β£159 on a new one for him, which is part of his Christmas and birthday present.

Still not really able to get out of bed, though I did try sitting on my computer for a bit. Feel terrible for doing so- can hardly control my arms and hands right now, which is making typing this difficult. Evenings are always my best time though.

I really need a bath, as I’ve not had one since last Sunday. My hair is probably a complete mess, as that’s not been touched for days, though it is in a French plait which should help a bit. I have a tangle teezer that should make it easier to sort out.

Aim for tomorrow- to be well enough by 6pm to get a bath so I can get clean. I also want to wear my Diablo 3 t-shirt as it’s awesome and I love it.