Category: M.E.

Been trying to write a proper blog post for ages. Brain not working enough. Decided on a list instead to get things down.

• Blizzcon happened. Was amazing. Still not watched everything I wanted to (kept falling asleep) but I’m very excited for Warlords of Draenor and Hearthstone. Heroes of the Storm sounds good too.
• Have been playing Minecraft recently. Currently working on automating all my machines and breeding bees. Advice from friend who has done bee breeding is don’t. There is a lot to it so he might have a point 😛
• Sometimes playing World of Warcraft, especially flexi runs with my guild. Brain brokened = terrible healer. Still fun though 🙂 My UI is buggy and I’m not well enough to sort it out.
• Wanted to write something for the This is Autism flash blog. Wasn’t well enough. Instead read lots of blog posts and they were good. Linky ->  http://thisisautismflashblog.blogspot.co.uk/
• Health is not so great. Seems this time of year is not good for me. Told CFS team I was improving then a week later started deteriorating again. Having sleep paralysis and other scary symptoms again.
• Neighbours are main cause of deteriorating health. They are being really noisy again. We have told the council and there are anti social behaviour cases against both upstairs and across from us (upstairs are worse but across has been bad as well). I haven’t have a full night’s sleep since across from us returned from who-knows-where.
• Our key safe was stolen. Coincidentally, it was stolen after the upstairs neighbours were watching my carer use it. Because of that our flat and both communal doors have had to have the locks changed. That is a big hassle we could have done without. It also means we’re back to Johan opening the door for the carers, and he’s missing out on stuff he wants to do.
• For now, my care and equipment stuff is on hold. My GP wants me to see the consultant again before having the case conference about it. I don’t think my GP realises how ill I am, as she keeps wanting me to go for hospital appointments and I’m not really well enough. I was discharged from the consultant as I was too ill to go see him, when I was doing a lot better than I am now. Constantly being asked about it is not helping.
• I’m becoming less able to do certain stuff. Emails are impossible (I’ve been trying to write one for the past two months, and it’s urgent) as it communicating the information to someone else to write it for me. Speech is getting harder. Doing a food shop online is nearly impossible, and Johan is struggling as well. I am getting a bit concerned about it.
• Had first McDonalds in over a year. Would be on a day where my digestive system was in full rebellion so I couldn’t enjoy it. It was the day Johan felt up to getting it though so I didn’t want to miss the opportunity.
• I think I’m losing weight again. Can’t be certain but my clothes/pyjamas are feeling looser and Johan’s noticed my fingers are looking thinner. I really need to keep my weight up but eating is hard 🙁
• I have Christmas to sort out, especially Sammie’s Christmas and birthday presents. Her main Christmas present is ordered but I need to get everything else. I have some ideas but need to check they’ll work, which means writing that email…
• I want to swap some of my distraction spoons (that I use for watching telly, gaming and reading) for doing stuff spoons (for use on food shops, emails and other stuff). Unfortunately when I’m not distracting myself then the pain and blehness and feeling horrendous gets worse, and that’s what is interfering with the getting things done.
• I have not been on social networks or up to chatting much recently. See blehness and stuff.
• I have finally caught up with the last season of Doctor Who and am looking forward to the 50th anniversary episode. Not sure if I’ll be able to watch it as it’s broadcast though I’ll try 🙂
• My Virgin Media TiVo box now has Netflix. This makes it easier to watch stuff on there without needing to turn my computer on first. Only UK stuff but there’s some awesome kid’s stuff I can watch when not well 🙂
• I have penguins. Penguins are awesome.

I’m sure I’ve missed tons of stuff, but at least this way I’ve got something down.

I think I might not be very well. The last few days I’ve needed extra meds, have spent most of my time asleep, and have felt rather more rotten than is normal for me. I feel bad as I’ve mostly been asleep when the carer is here so they’ve not been able to help, and I keep needing to wake Johan up so he’s not getting enough sleep. I’m hoping this is just a blip and not a relapse.

When I have been awake and fully drugged up I’ve been playing Minecraft on my WoW guild’s server. Have set up some mining turtles on the mining world (Mystcraft age), created some Ender chests, and made myself some long fall boots (Portal mod), quantum leggings and helmet and a GraviChestPiece which means I can fly as if I’m in creative mode while in survival, as well as some other funky stuff. Johan has also been playing with me and we have teleporters set up between our bases so we can help each other out. We’re still way behind Lather on technology though, as he has all his machines automated and has a nuclear fusion reactor. He has helped us both out a lot though and meant we could take shortcuts.

I’ve been enjoying Minecraft and it’s been a good distraction, but after becoming massively nauseous this morning I’ve realised while this ill I should probably rest more and play less Minecraft. Blizzcon is this weekend and I want to be well enough to watch that so I think I’ll skip the computer for a bit. I’ve not really been playing WoW the last week or so but haven’t minded the break too much. I have so much I want to do and not enough energy or health to do them all 😛

I’m glad my brain is working a little better now though than it was. I’ve been reading ebooks and fan fiction, mostly teen and young adult dystopian fiction, and though I’m still a lot slower than I used to and my recall is terrible I am able to read them, which is good. Will be a while before I’m back up to three books a day (partially as I don’t have unlimited money and the library’s ebook range is tiny compared to their physical range, partially as I’m so slow) but I’m managing two or three a week now. I’m tracking the books I want on Goodreads and Luzme- the latter tells me when those I want are reduced in price so I can pick them up while they’re cheap or free 🙂

So a mixed bag really. The last blog post I wrote I pressed publish before I’d finished writing it on the Android app, and was too out of it the fix it then it had been too long so I left it. At least I’d finished the paragraph before publishing 😛 We ended up having one ring at the door on Halloween but Johan wasn’t coping so didn’t answer it. I wish I could have as I’d love to have seen some kids in costume having fun (I heard them and they sounded quite young).

Tonight is Bonfire Night. I can’t see fireworks from my bed so I’ll keep the ear plugs and defenders ready and hope they’re not too noisy. Maybe next year I’ll get to go to the organised display as it’s not too far away. We’ll see 🙂 In the meantime the penguins are looking after me so I’ll be fine.