Category: Computers

Danni

Improvement!

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

For some unknown reason, I’ve started improving. Not just the small improvements I normally get when coming out of a relapse though- I feel much stronger, and have so far sat on the edge of the bed unsupported for 30 seconds (Johan stayed there to be sure I didn’t fall) and sat on my bed for much longer. Then I cuddled Johan for half an hour because I’d not been well enough for hugs for weeks and I really wanted them.

Last night (unfortunately I’m nocturnal at the moment but my sleeping pattern will fix itself when it wants to) I found that after the normal blehness that comes from waking up had worn off, I was feeling just as strong as I did the day before. I was playing some World of Warcraft and planned to try getting into my wheelchair, when the power went off. Unfortunately there was a fault with an underground power line and it took over 4 hours, cutting the cable and adding fuses (according to Terry at Northern Powergrid, who was keeping me informed via Twitter) to get it back up. When the estimate changed from 1am to 4am (at 1.30am) Johan went under my bed and lowered the head of it manually, as although I was doing okay with having the head of the bed up we didn’t want to risk me becoming more ill. Without the bed working or lights (we had a couple of torches though Johan had misplaced some of them) getting into the wheelchair wasn’t feasible so has been postponed until I next feel well enough. If I’m lucky that’ll be after I’ve woken up again 😀

I honestly cannot explain why I’m doing the best I have in about 2 years. Going from incredibly weak (unable to even roll over or raise my head off the pillow weak) to being able to support myself for a bit in less than 2 weeks is amazing. I’m incredibly grateful for it, and I’m hopeful it’ll continue and I might even get better completely. If not though, I’ll remember these days as good days anyway. I think resting plenty might have had something to do with it, and there’s prayer as well which I know can work sometimes, though not always as expected.

I’m not completely better. My digestive system still hates me, I’m still getting a lot of nausea, pain is still a big problem. I still have a some muscle spasms, though they’re mild at the moment. But I’m doing so much better than I was even at Christmas that it feels amazing, and I really want this to be a long term thing. I’m praying 🙂

Danni

New Year Resolutions for 2014

Autism, Computers, Danni, M.E., Mental Health, Physical Disability, Real Life
Fireworks in London to bring 2014.
Fireworks in London to bring 2014

Another year has passed. I am not at all ready for the start of 2014, but time carries on whether I want it to or not.

2013 was a strange year for me. I felt mostly at a standstill- I guess not really getting out of bed for over a year would do that. I’ve been up and down healthwise, and moving things into my room so I could access them from bed definitely improved my quality of life, even if it did feel a bit like giving in at times.

I’m doing better than I was a few days ago. As is not uncommon for me, I improved as rapidly as I deteriorated, so I’m able to deal with the normal level of lighting in my room again, normal (quiet) sounds, raising my head in bed, and I’m rolling over and eating better (though still not as good as normal). I even got dressed into clothes today 🙂 My speech went weird for a bit, but I think it’s finally back to relative normal (speaking is hard work but I can do it).

So, resolutions. Last year’s were all technology related:

  1. Comment more on blogs.  – I think I’ve done okay on this. Not commented anywhere near as much as I’d like, but I have commented on quite a view blogs I like to read. Unfortunately some of the ones I like have captchas that mean I just can’t comment on them, but I managed it overall.
  2. Sort out my emails.  – My emails are nicely sorted, with filters into different labels (on GMail used in place of folders) for all my different types of email. Not perfect, but it’s an awful lot better than it was. I’ve also managed to stop using my dannimatzk.co.uk email address completely. That’s a success then 🙂
  3. Sort out my Google Reader and Pocket.  – Google Reader died! That was unexpected at the time. I ended up moving to Feedly, and overall it’s working a lot better for me than Google Reader was at the beginning of the year. My Pocket is mostly clear of stuff to read now, and while it’s almost empty I’m thinking of setting up the tags to make it even better for me. Took a long time but I managed this one 🙂
  4. Try and communicate better with my friends. – This one has been a bit more hit and miss. I wasn’t expecting to be so ill for the entire year. I think I did better than 2012 but I want to carry on trying to improve.

Overall I did quite well on them. I’m going into 2014 with my technology more sorted. So now it’s time to decide on new ones for this year 🙂

  1. Have a bath or a shower. I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated. Anyway, I have a massive build up of dry skin on various parts of my body, and wipes and the occasional bed bath just isn’t cutting it now. I want to be properly clean. I have an entire year to figure out getting a bath or shower, so hopefully it’ll happen 😀
  2. Sort out health book/care plan. This is something I’ve been wanting to do for a couple of years now, but I’ve not actually got around to doing it. Recent issues with my current carer have shown that I really need to have my needs at different times down in writing, as when I’m particularly ill (and Johan is as well) that’s not the best time to be trying to explain stuff. I also want to include an alphabet board for communication when I can’t speak or type. The main issue I can see with this resolution is that I need help with printing, and whenever I ask Johan to print something for me he meows and panics. Luckily I have all year to think of a solution to that (though the sooner the better :P).
  3. Be kind to others. Sometimes when I’m not doing so well I forget that other people can be hurt by what I say or do. I’ve been incredibly touched by how kind people have been to me the last few years, and I want to try and pass that on in any way I can, and try and think of how my actions can affect others. In the event I do hurt someone else (no-one is perfect, least of all me) then I hope I will be able to apologise and try and make things right.
  4. Be kind to myself.  This has been my resolution before (I think for 2011) but it’s one of those that I think I could do with a reminder of. I’m slowly learning that sometimes to be kind to myself I don’t have to do what others want of me, and I shouldn’t be any harder on myself than I am on anyone else. I also don’t have an obligation to keep in touch with people who ultimately make me feel worse (either about my self or generally health-wise) and so I need to work on being more assertive when it comes to that.

I think that will do. Two rather practical resolutions, and two that are going to be harder to quantify but are ultimately more important. I also have some goals for the year that aren’t resolutions, such as getting an iPad with Proloquo2Go, trying to blog at least once every month and getting out of bed again, but one of those is funds related and the others are very much health dependent so I’ll have to wait and see. I’m praying this year will be better healthwise for all my spoonie friends, and as good a year as possible for everyone I know 🙂

Danni

WTB: Better Neighbours

Autism, Computers, Danni, Gaming, M.E., Minecraft, Penguins!, Physical Disability, Real Life, World of Warcraft

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.

Danni

Minecraft is Awesome

Autism, Computers, Danni, Gaming, M.E., Minecraft, Penguins!, Physical Disability, Real Life, World of Warcraft

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.

Danni

Reading and Book Reviews

Autism, Computers, Danni, M.E., Physical Disability, Real Life

I love reading. I’ve been reading since I was two and it’s always been my biggest obsession. I can’t not read- if there are words, I have to read them (this can cause problems when I’m meant to be concentrating on something else). I used to be able to memorise everything I read, which was brilliant but I lost that ability as a teenager.

Until I got M.E reading two or three books a day was perfectly normal. I loved both nonfiction and fiction. I’d go from reading a favourite children’s book to an encyclopaedia to a text book or a classic novel. A lot of my love of the internet is because of how much there is to read, with wikis, fan fiction and blogs as well as traditional websites on any topic I could think of. Even my use of Twitter is mostly reading, as it’s my best way of finding out what’s happening in the world and with those people I’m friends with or interested in. Reading is what I do best.

Despite my love of books and reading, I don’t like writing book reviews most of the time. At school I’d only review as few books as I could get away with (in one class reviewing two when I’d read more like twenty). I don’t like analysing books, picking them apart for hidden meanings, thinking about the quality of writing instead of what the message actually is. When I try to write a book review I always feel I can never quite do it justice. Some of this because I can’t always identify my own thoughts and feelings or put them into words. Mostly though it’s just because most writing doesn’t interest me anywhere near as much as reading does.

I’m glad book reviews exist. As I’m not well enough to read everything now (and can’t read normal books as they hurt too much) they enable me to choose what ebooks to buy, and I enjoy reading them just for enjoyment as well. I’m amazed at how other people are able to write so well about something they’ve read. I guess it’s a bit like how I’m always impressed by writers telling stories in such a way I can be there, something else I can’t do.

I love books, stories and reading. I’m just not very good at writing about them.