Category: Computers

Danni

Random Stuff I Can’t Think of a Title For

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

It feels strange that I’ll only be 26 for two more days. On Tuesday I turn 27. This is the first year I’ve felt like I’ve not really done anything of note- I got more ill and have spent more than half of it completely bed bound, but I’ve not been anywhere interesting, or done much.

Not sure what I’ll be doing on Tuesday. Have decided to get a nice takeaway that evening- either Lebanese or Sushi. I also want a birthday cake. Having a birthday cake is very important to me, especially since on my 16th birthday I didn’t get any (and I’d had two GCSE exams that day so my birthday being pretty much ignored didn’t make me feel better). Birthday cake is one of my favourite foods, especially with lots of nice icing.

I was torn between buying a new television or a new monitor (I’d saved a bit of money and got a refund from a cheap telly I tried and ended up not being as described- don’t say there’s a DVD drive if there isn’t!). I’ve ended up buying a 24″ Dell monitor, with a resolution of 1920×1200. I don’t like 16:9 resolution for my monitor (I need the extra height) and trying to find a 16:10 monitor these days is really difficult. This one has excellent reviews and I’ve bought a very good used version from Amazon to save about £40 on the new price, as it working is the most important thing to me. I’ll get the television in the future, probably around the time I get a Virgin box in my room (I’m well enough to watch stuff now and the streamed stuff isn’t quite as good as what I can get through the box). The new monitor will help me play World of Warcraft better and will make things a bit easier to see, so I’m looking forward to it. I could use the old monitor as a television temporarily (it has speakers and a HDMI connection) though I’m not sure I’ll be able to see it properly at a distance with my eyesight as screwy as it is.

My health has been variable. Had a good few days when it was really warm, then started going downhill a bit with lots of pain and mood swings and stuff. Was worried it was a relapse but it turns out I was about to start my period. First one that Johan has had to help me with (I have a Mirena coil which means I only rarely get periods- can go months or years without one) and he didn’t know what it was at first 😛 Luckily as I’m wearing pads anyway it wasn’t really any extra work for him. Seems to be nearly over so hopefully my body will settle down again, as I was enjoying not needing as many painkillers and hate being all moody.

The incontinence pads the NHS provided me aren’t absorbent enough. I think my urinary retention over the past year has stretched my bladder, as when it completely empties there is a lot of liquid- over a litre at a time. It’s rare I can get it to empty completely (have loads of issues with it) but when it does it was too much for those pads to deal with. Luckily I still have plenty of the ones I bought myself which can handle my bladder emptying, so am using them again until it’s sorted. Unfortunately my carer wasn’t able to explain to the district nurses the situation properly (I said we needed to change for more absorbent ones- she said I wanted to order more), so the district nurse said we’d contacted the wrong people and that I need another assessment as I think she didn’t know I’d just had one) so I’m going to ask the GP to sort it, if I ever see her.

It’s frustrating when I word things very carefully to make sure what I need is really clear and then people reword it to something that doesn’t mean the same thing at all. Happens all the time and means things end up harder than they should be. I’m not blaming the carer for this- she didn’t know that her wording wouldn’t work or that it was an issue for me, but it’s still frustrating anyway.

I have finished playing Katawa Shoujo (a romance visual novel set in a school for the disabled in Japan). My favourite route was probably Hanako’s, though I enjoyed all of them except maybe Shizune’s. Shizune is too manipulative and it brought up some bad memories. I sometimes got really frustrated with Hisao, the main character, as he often acted in ways that were too different from how I’d act. It was really enjoyable and I liked it a lot. It does contain sex scenes but they can be turned off (I still wouldn’t recommend it for kids though). I thought the portrayal of disability was pretty realistic, and I related a lot to Hanako, Rin and Emi (I have aspects of all of them, though Rin thinks closest to how I do).

I’ve also caught up with My Little Pony: Friendship is Magic. I enjoyed season 3, but felt the ending was too rushed and confusing. It should have been split into two episodes. I don’t mind the outcome too much, but would have preferred more explanation. I’m interested in Equestria Girls which is coming out today in the US, so might have to see that when I can.

Still nothing from the OT or a social worker yet. I’m frustrated that I’m doing so well in some ways, but I’m stuck in bed because I’m waiting for an assessment. It’s not safe for me to transfer without a hoist and I’ve fallen too many times now to risk it again. I also want to rearrange my powerchair assessment but I can’t do that until I know when I’ll be able to get out of bed again.

My hair is annoying me. It’s a few inches long now and sticks out everywhere. I can’t get it to behave. I think I want to shave it all off as I much preferred it shorter and I’m still not able to look after it properly (touch makes me really ill). My noise sensitivity isn’t as bad now and I can be more upright than before so I’m hoping that I’ll be able to get it done soon if I wear earplugs and things.

We watched the Sony presentation at E3 online, and have decided to get a Playstation 4. Johan has put in a preorder and I’ll be buying it for his Christmas/birthday present. It looks really good, and the price is lower than we were expecting. It’s the first console we’ve been so impressed by we want it as soon as it comes out. Will mean a bit of saving but not too much and it’ll be easily doable. Being bed bound has its uses. (The main reason I don’t just buy a hoist and things is I don’t know what ones to get without an assessment first- I’d be quite happy to buy what I need if I knew what it was I was meant to be getting. There’s also the problem of sorting out maintenance and stuff like that, where if I stick with NHS or Social Services they are responsible for it all.)

Hopefully I’ll hear something from someone soon. I’m starting to get bored in bed- I have been here nearly constantly since November so I think that’s understandable. If it does look like it’ll be loads longer then getting a television and things will at least make it more bearable. I’m happy that I’m nowhere near as ill as I have been- severe ME beats very severe ME any day 😛

Danni

Twilight Sparkle is Favourite Pony

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life, World of Warcraft

Danni wearing purple wig with pink at the front, surrounded by penguins.

I really like this photo of myself. Yesterday (Tuesday) I finally wore my wig, and I love it. I also got dressed and had my hair washed (took wig off for that). Had the best day I’d had in months so very happy. Bullet points for easiness.

  • I have a Tumblr now. Tumblr is cool. I’m at http://dannithepurplepenguin.tumblr.com/(Dannilion was taken) and I’m slowly figuring it out.
  • Still not spending much time on Twitter or Facebook. They are overwhelming. That is frustrating.
  • Spending lots and lots of time in World of Warcraft. Brilliant distraction.
  • Tiarna (my Gnome Mage) is now level 90. I now have two characters at level cap.
  • I saw the CFS team again. They are going to continue visiting me at home as long as I find it helpful. That is reassuring.
  • I need to see the GP again about stuff. Still getting kidney pain even though I’d been on antibiotics for the infection.
  • I have NHS incontinence pads/adult nappies now. First got sent the small which are tiny. Now have the medium which are too big but usable. Gateshead use Molicare, which are actually decent.
  • Still no sign of the OT. I wanna get out of bed!
  • Social services sent out a not-social worker to do my care review. Not-social worker quickly realised we need a full care review, not a quick “everything’s fine, sign here” as he was expecting. He said he’s going to yell at people for us. Made it clear we’re not coping.
  • Fortijuice seemed to help at first when mixed with lemonade, but then they made nausea really really bad. Need to contact dietician as I’m meant to be having three a day.
  • Eating has improved a bit, and I’ve gained some weight back, but food digestion seems broken. I’m bringing up food I ate over 12 hours later. And it’s still identifiable. And not nice at all. It’s also causing constipation.
  • My emotions have been all over the place for no apparent reason, though my mood overall has been good. Feels weird and frustrating, but it’s probably an M.E. thing.
  • My anxiety is still really bad. Still having panic attacks over things like the doorbell. Need to speak to GP about it as I have a solution (small quantities of benzos) but need to see if she’ll agree.
  • Am in ESA Support Group. That is a relief. Didn’t need a work capability assessment or anything.
  • Currently have Vicky and a new friend, Duck, staying over. This is nice. Duck is from Israel and is a big geek (and autistic).
  • Johan bought a bike. Then discovered he can’t ride up hills. We live in a very hilly area, halfway up a steep hill. We’re trying to figure out a solution.
  • The 24 hour Tesco has reopened. Johan can go there when it’s quiet (so late at night).
  • I need to catch up on Ponies and Doctor Who. Just need to have the right type of brainpower. I’m getting there though 🙂
  • I have a grade 1 (least serious) bedsore on my bum. Need to keep an eye on it as I don’t want the skin breaking. It hurts (and has done for a couple of days). I really need a profiling bed.
  • I think I’m finally accepting that I’m severely disabled. Still don’t feel it though. Just means I now get surprised when people do things that are easy for those who aren’t severely physically disabled to do that I struggle with or can’t do at all.
  • Dairy Milk Marvellous Creations Jelly Popping Candy Shells is the best chocolate. And seems really hard to get around here.

I’ve probably missed loads of stuff. Still not great at the whole communication thing but a little better than I was. I want to blog more so I’m hoping this improvement lasts so I’ll have the spoons to do it. We’ll see 🙂

Danni

Body Naughty

Autism, Computers, Danni, Gaming, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life, World of Warcraft

I wish my body would make some sense sometimes. I can watch Doctor Who and go on computer and play World of Warcraft. This is all yay! I feel okay so long as I don’t try and sit up or be touched.

Not being able to sit up (I keep fainting- highly inconvenient) means I’m stuck in bed (also because we not got a hoist). Not being able to be touched without becoming really ill means I have to be really careful about being washed, dressed, or moved (I can roll and shuffle a bit on the bed, but that’s about it due to muscle weakness and stuff). Also means that there’s very little personal care that my carers can do (if I have too much done, I get really ill for too long so they no want to do that).

Brain hasn’t been working for writing stuff which means no emails, blog posts or tweets for ages. Very annoying.  Still not heard from the OT or Social Services. Still having problems with the neighbours. Missed my second appointment with wheelchair services and looks like I won’t be going until a hoist is sorted. Missed loads of other appointments too, and having to accept that I can only have home visits now as can’t get out.

Bought Desire Z as needed keyboard on phone. Not as easy as tablet to use but much better than trying to type on touchscreen with hands that don’t work properly.

Missed Autism Awareness/Acceptance Day/Month, and ME Awareness Day/Week. Also Blogging against Disabled Disablism Day. I wanted to participate but beyond my capabilities.

Apart from a meltdown caused by missing the wheelchair assessment (I’m pretty desperate now for a wheelchair that fits and works for me) not been too bad on days I’ve  not had a wash or changed clothes or had teeth brushed or anything. If I have, then I really really ill (and for a while afterwards). Trying to manage it in bits. Pad changes are the most I can cope with, and even then if touched too much then make ill. Carers do more touching than Johan which means I do better when he does changes. Too ill to teach carers how to do pad changes properly.

Saw good friend. Didn’t make too ill. Made happy. Was good. Hope to see good friend again soon.

Still think I’d be better at running the country than the present government, even with current brain problems. Least I know who to ask for help and what’s fair.

Sorry blog post broken like body. Hope for proper post as soon as brain works for writing again.

Danni

Stuff That Happened

Autism, Computers, Danni, Gaming, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft
I'm out of bed! Yay!
Danni in the hospital restaurant

A quick update post, as a longer rambly post is beyond me.

  • I’m not as bad as I was. Still nowhere near good, or the level I was in November before the relapse started, but three pillows happens sometimes.
  • Johan went to London and met John and Hank Green, and saw Maureen Johnson. John said “hi” to me via Johan. I got the signed copy of The Fault in Our Stars that has John Green’s signature in purple sharpie and a green Hanklerfish.
  • Johan then went to Leeds to see his parents and met up with a friend. They had good noms.
  • Vicky stayed with me. It was good. I managed not to spend too long chatting to her, helped by having no speech when she arrived.
  • Vicky is good at the personal care thing, but there are areas that the dyspraxia really shows. Like wiping my bum. And spilling as much porridge on me as ended up in my mouth while she was feeding me.
  • Saturday (when Johan went to London and Vicky arrived) I was very ill. I nearly ended up going to A+E with urinary retention but my bladder decided to stop spasming in time. Was very painful, and I was worried it would cancel Johan’s trip.
  • Just after the last post, Matilda died. We bought a new, shinier motherboard and CPU, gave Johan the motherboard (I got his- the new one was the one up from the one he had) and I installed Windows and Kubuntu. It is much much faster than my old one. My computer is still called Matilda.
  • I’ve been very up and down. I go from complete paralysis to being able to go on Matilda, sometimes in the same day. Yay fluctuating illness!
  • I am one day away from Exalted with Golden Lotus and the Klaxxi in World of Warcraft. I’ve not been well enough to go in and finish it.
  • Many of my friends are leaving my guild in World of Warcraft as they want to raid more than my guild can offer 🙁
  • I’ve lost more weight. We need to tell the dietitian. She hasn’t sent the supplement prescription details to my GP for my GP to prescribe yet.
  • I’ve seen the GP. We have agreed I can take double tramadol when I need it so long as I don’t exceed the daily limit of 8 tablets. That is fine by me.
  • I went to the hospital for a scan. It was the first time I’d got out of bed (excluding the half getting out of bed to weigh myself followed by collapse that I’ve done a couple of times as I needed to check) since November.
  • The ultrasound was clear. That’s both good (there’s nothing seriously wrong with me in that area) and bad (we don’t know exactly what is causing my pain).
  • I managed the trip with lots of drugs (also how I managed the weighing myself) and because I was having a really good day anyway (for recently). We went to the hospital restaurant after the scan where I had a cup of tea and a pizza panini. The cup of tea was amazing, especially since everyone else had been drinking tea and I wanted it desperately.
  • The upstairs neighbours are still being very noisy and inconsiderate. I’ve not had a reply to my email yet so I need to redo it and send it to the housing office proper. I don’t have the spoons to do it.
  • Our opposite neighbour had his door smashed in. I was very brave and told the police (through Johan) what I heard. Considering the cyclizine had kicked in and I was half asleep when it happened and even more so when they arrived, I think that was why I managed it as I was too tired to panic.
  • There is a CCTV camera in the upstairs part of the block (in the communal area). We did not know this until the police asked Johan who owned it.
  • Buses are still more comfortable than ambulances when you have a wheelchair with decent suspension that tilts and reclines.
  • Johan has started taking Seroxat. He is getting some unpleasant side effects but hopefully they will ease off soon. We’re hoping they’ll help with the depression and anxiety.
  • Vicky brought up the idea that Johan may have ADD after watching how distracted by everything he gets when trying to do something (like packing for his trip). It makes sense. If nothing else, I’m going to look into the self help management techniques to see if they can help him now I’m not well enough to organise him.
  • I’ve been able to re-read some children’s books. But replying to Facebook messages is too hard. My brain fog is weird.
  • I got sucked into TV Tropes again for a week. I’ve only just got out, but it did lead me to read some fan fiction (with commentary) and start re-reading the St Clare’s books by Enid Blyton again.
  • I have forgotten loads of stuff from the St Clare’s books. Seems I remember Malory Towers better.
  • There is a load of bullying in the St Clare’s books. I missed that when I was a kid.
  • One of my favouritest people in the world has got engaged 😀
  • I have amazing, awesome friends.
  • Johan is brilliant, and I can’t imagine being without him.
  • Penguins should rule the world. They’d do a lot better than silly humans.
  • Purple is the best colour.
  • Even my short updates end up really long. Guess I have a lot to say even in bullet point form.
  • I hope I’m getting better, but won’t know for sure for a few days.

I want to blog more but writing stuff is harder than reading it. So maybe I keep reading children’s books and if I’m stuck, I write with bullet points as it seems my blog posts end up just as long anyway 🙂

Danni

Hello Matilda

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

I’m still stuck in bed. Sitting up isn’t working, moving is difficult and most of my symptoms (apart from light sensitivity) are still really bad. Because of this, we moved my desktop computer (called Matilda) into my bedroom temporarily so that I have a decent machine to use.

I had been trying to use my laptop (Annika) but as she’s over 5 1/2 years old and a bit broken, it was rather frustrating and meant I couldn’t do as much as I wanted to. Playing games wasn’t working as the lag was making my motion sickness really bad. Reading stuff was easier on my tablet, and typing was an issue as the wireless keyboard I used with it was too lightweight so kept moving when on me and I couldn’t be propped up enough to use the laptop keyboard comfortably.

I know the most likely reason I’m not improving like I’d normally do. Our upstairs neighbours are still causing a lot of noise every other night which makes me more ill. I have managed to send an email to the housing officer but have yet to have a response. Writing that email made me feel terrible though, and it’s not the only communication thing I have to do (I can write blog posts as they’re just a brain dump- emails need to be properly written and that requires more brain power than I really have).

I have not seen my GP yet. Johan tried to phone her before Christmas but we never got a call back, and he’s been too anxious to try again. I really need to speak to her as the dietician prescribed supplements and I need stronger painkillers (we’ve had to resort to doubling my tramadol when it’s unbearable, as it’s less risky than going to hospital for morphine). I also really need to get my bladder issues sorted, as while I don’t mind wearing incontinence pads for now, I don’t want to need them for too long if I don’t need to. They have made a massive difference though, and I’m less sore than I was using the bedpan.

The care agency is still messing us around. I need to complain but I haven’t got the energy. What we need is support with communication and appointments- someone to help us with sorting paperwork (now I’m no longer well enough to do it), telephoning people, helping us write emails, making appointments, informing people of our needs (I have an ultrasound next month and they say to phone them if you might need help getting on the bed- we need to let them know that and that I’ve got a big wheelchair as the waiting room is really small). I asked and asked for help finding someone but we got nowhere, and now I’m too ill to do it. I knew this situation would occur but that doesn’t matter to anyone like social services.

We’ve had some good news. Scottish Power asked for our meter readings, and though it took Johan a while to actually get them (anxiety and forgetting) once we gave them they have reduced our direct debit as we’re well in credit and it was set too high. It was already quite a bit lower than at our old place so this flat must be better insulated and stuff. That’s an extra £25 a month which will come in handy. We’re also getting two cold weather payments as it’s been so cold (and I’ve had to ask Johan to turn the heating up as my nose was getting cold- indoors in bed). I’ve decided to use them for bedding as I’ve seen some awesome rainbow ones online that are the type I’ve been looking for for years, and since I spend so much time in bed it will help.

Having Matilda in here is helping me so much. We have my big monitor on my overbed table, my mouse on a pillow and book on the bed and my keyboard propped up on me with penguin pillow. I need to work out the best way to have the keyboard as my tummy gets a bit sore with it poking me in my tummy, but it’s loads better than the laptop. I managed to play a bit of World of Warcraft and SimCity Social earlier, which was made possible by it not being as jerky. It also means I can get on Facebook properly again, and I’ve loads of things to respond to from the last couple of months that I’ll try and get through in the next week or so. I’m hoping to start building up my ability to watch videos and things- probably start with short YouTube videos then go from there. I’m going to have to be careful not to overdo it, but it’s massively improved my mood.

I think the hypersomnia may be calming down a bit. My sleeping pattern is completely off again because of it (hence me writing this at twenty to six in the morning) but I’m trying not to worry too much about that. It will fix itself at some point. Right now I’m just sleeping when I need to sleep, and being awake when I can. I’m still not eating enough, but managed a couple of meals of actual food (rather than just yoghurt and milkshake) and though it’s exhausting and I can’t do it everyday yet I’m hoping to build that back up too. It’s frustrating as if we didn’t have the neighbours causing so much noise I’d probably be doing better like I was the last few times I relapsed. At least I’m not right at the bottom.

We’ve had snow. Lots of it. Johan went out a couple of times but I think he doesn’t want to go too far while it’s bad. I’ve been impressed by the Sainsbury’s delivery guy for not being that late despite getting stuck somewhere else (we got a phone call telling us he’d be late, something we were expecting anyway). I’ve seen photos and when it was snowing heavily one evening Johan pulled the blind up so I could watch it properly. That was awesome, as it was lit up by the street lamps so not too bright but it was beautiful falling.

Johan is not doing great, though it could be worse. His anxiety is really bad (which is why he can’t contact the GP or anyone else) and his brain has been mean to him at times. I wish it was as easy to fix as my bad night was- we fixed mine by giving me a double dose of tramadol as it was all pain related. He’s had a few projects though which I think have helped a bit. He’s built a media centre server out of spare parts we had laying around (he bought a new case and CPU cooler from the local computer shop but that was it). He managed to get his broken monitor working again. Since he brought my computer in here and I can only have one monitor for now, he’s borrowing my desk and my other monitor and now has a four monitor setup, and I think he’s plugged into the telly as well. Things like that seem to help, even if only for the short term.

Johan is going to London to see John and Hank Green (vlogbrothers) very soon. He’s planning on going to Leeds afterwards to see his parents as he’s not seen them for far too long. Vicky is coming to stay with me while he’s gone, which is good as she’s had some experience in personal care (including bathing me when I was severely depressed) and is not someone who makes me worse. My main issue is going to be remembering not to talk to her too much as it’s tiring and accidentally spending all night chatting has happened before.

Overall I’m not as bad as I could be, thanks to ear plugs, ear defenders, and Johan. I’m frustrated that any attempt to increase my pillows fails so getting out of bed isn’t going to happen for a bit (which means the ultrasound that’s meant to happen next month is probably going to be interesting, though I’m determined to make it if I can as I need my biliary system checking). If I’m careful I can play some games, read some blogs and children’s books, and sometimes eat solid food that needs chewing. I still can’t listen to music with lyrics or anything too complicated but I’m hoping that’ll improve soon. I have loads of TV programmes to catch up with when I’m able to watch them 🙂

My penguins keep me going. Johan plays with them for me when I’m not doing great and it helps a lot. Penelope is definitely the head of the family. Penguin still loves flying and trying to get his own way (and often failing). Poseidon wants to learn about everything, and has started using Twitter. Purple Penguin is just happy about everything, and often goes exploring (usually under the bed). Po and Purple Penguin went out with Johan and got to experience snow. Po decided it was too cold (he is a baby emperor penguin and they normally stay on daddy’s feet at his age, though as it’s warm in my flat he can explore more) and Purple Penguin thought it was brilliant. I am glad they went out in it even if I couldn’t.