Danni

Saturday 14th November, 2015Sunday 15th November, 2015 Danni

Fishtail Bracelets

Blizzard, Danni, Gaming, Hearthstone, Loom Bands, M.E., NaBloPoMo, Physical Disability, Real Life

I’ve currently got a problem where I can’t sleep at night. Since that’s when other people sleep and most things happen during the day, that’s an issue. I’m hoping that I’ll soon get over the anxiety and paranoia that’s stopping me sleeping then.

Carer arrived this morning 50 minutes late, as the carer who was meant to be coming phoned in sick, and I was about to get stuff done when her perfume hit me. Since she was still standing in my doorway it must have been extremely strong as I was struggling to breathe without her coming close. I asked her to leave (no strong perfumes is on my care plan and door) and it took over half an hour for the smell to dissipate. Not what I was wanting. I was hoping to wake up for the evening carer, but they came in so quietly that Johan didn’t even realise they’d been until he heard her putting the keys back into the keysafe. I had set an alarm but it didn’t go off for some reason, so I’ll try again tomorrow. The one time I wanted to be woken up it didn’t happen 😛 (I don’t blame the carer for that.)

Spoke to Sammie this evening and she beat me in the Tavern Brawl in Hearthstone. She’s definitely getting better at the game- making better decisions and understanding what to do more. I took a break to watch Doctor Who then we talked after while she was playing Minecraft and I was working on a loom band bracelet. Speaking to her cheers me up loads 😀

My setup for making a loom band bracelet. Trabasack with loom, hook and bands sorted (plus spares as I didn't know if I'd need any more). — My setup for making a loom band bracelet. Trabasack with loom, hook and bands sorted (plus spares as I didn’t know if I’d need any more).

I’ve managed to make two loom band bracelets in the last couple of days, both reversible and based off fishtail patterns. The first is called a reversible slipfish, and I made it with glitter jelly bands from my massive box of loom bands (it has 15,000 bands in that should keep me going for a bit). I first tried it a couple of days ago but made a mistake that was really noticeable and too far down to really repair, and I wasn’t happy with the way the colours had gone so while I couldn’t sleep last night I decided to start again. The design makes my hands sore and crampy quite quickly so I have to take a break every couple of minutes, but I managed to finish it tonight while talking to Sammie. I really like the design and I want to experiment with different ways of creating it to see what happens when I’m more confident. The only problem I really had was the glitter from the bands getting everywhere, so my bed Trabasack and top are now covered in glitter 🙂 The YouTube video tutorial is at https://www.youtube.com/watch?v=qTFCGpmHvEs.

The second is called the 5 pin funky fish, and I decided to use multicoloured bands for that one. As I made it using a monster loom it was a lot easier on my hands so I could go longer before needing breaks, and I managed to complete it in a couple of hours. I like how there’s two fishtails on one side and three on the other. The tutorial video is at https://www.youtube.com/watch?v=WBEjpMut7Yw. I’m getting better at making them though I still have an issue with bands twisting and sometimes making mistakes, though that’s also giving me lots of practice in how to go back and fix them. I think I might be able to consider loom knitting as not needing to hold everything up and being able to put it down whenever is what’s making this possible for me, along with only needing to concentrate on what one hand is doing (and I alternate them to try and cope with cramping).

One side of the reversible bracelets. The SlipFish is on the left, the 5 Pin Funky Fish is on the right.

The other side of the reversible bracelets.

I’m hoping tomorrow to maybe be able to go out, or at least get into my chair. I’m also going to try really hard to be awake for the evening carer as I need my hair washing desperately. The next time I get into Gateshead or Newcastle when places are open I’m hoping to go to a barbers to get all my hair shaved off, but until then I’ll just need to figure out what to do with it.

I’m also looking for dystopian young adult fiction where romance isn’t one of the central themes. This is harder than it should be. Why does it always have to involve love interests, and often a love triangle? There’s more important things to be doing! Silly books. I noticed as a kid that most pop songs were about love or romance in some way, and didn’t like it. Even now I get irritated by many songs are like that. Come up with other topics please?

Before I come off puter tonight I’m hoping to catch up on some more of the Blizzcon panels I missed, and work out what bracelet to make next. This is addicting 🙂

Friday 13th November, 2015 Danni

Mood Whiplash

Danni, Gaming, M.E., NaBloPoMo, Physical Disability, Real Life

Has been a weird day. My original plan was to have the morning carer make me bacon and eggs, sleep until the evening carer, have my hair washed then go on my puter to speak to Sammie. It didn’t go to plan.

The carer this morning just never showed up. It was very windy so every time I heard a noise I was on edge just in case it was the key safe. Johan stayed until 10.30am then had to leave for his day service, so he gave me some fruit as I was hungry and he didn’t have time to cook me anything. I stayed awake until 12.30am and though someone knocked on the door around 11.30am, I don’t know who it was and if it was a carer they’re meant to use the key safe as I’m not able to let them in.

Since I didn’t get to sleep until 12.30pm, I didn’t wake up until 7pm, missing the evening carer (who did come, and was a nice one who is going to ask the agency why carers aren’t showing up). Once painkillers had kicked in and things I went on puter to talk to Sammie and Johan made me bacon and eggs. The food was nommy (they were duck eggs for a treat) and Sammie has had a really good day so that cheered me up really well. She told me she was glad that I’m autistic as she thinks it’s better for her, as she’s grown up knowing about it and her best friend is also autistic. I thought that was really sweet 🙂

After both downloading the Hearthstone patch we managed a quick game of the tavern brawl before she had to go to bed. She’s asked me to tell her the backstory of Nefarian and Ragnaros so I need to revise that before I next speak to her (I kinda know it from playing World of Warcraft but it’s been a while since I’ve been in Blackrock so it’s a bit fuzzy). I had a lucky win, as I was Raggy and my hero power hit Nef’s face. If it had missed Sammie probably would have won 😛

I was on a big high from talking to Sammie and planning to talk to her again tomorrow, when I saw the news about the attacks in Paris. I have a friend visiting there and he’s okay, but I really hope it ends soon. I hate it when bad things happen and I hope those behind it are brought to justice. For now I just want everyone to stay safe, and I’ll keep praying.

Thursday 12th November, 2015 Danni

Penguin Feet

Danni, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life

I got some new penguin feet slippers today. They are cool. Also was able to sit in my chair to see CFS team. They are happy I’m getting up and helped me with plan on getting up more. Also recommended wheelchair services as I’m at risk of pressure sores in my chair (not enough padding on my bum). I wore my new penguin shirt and it fits nicely.

No carer this morning. Was annoying as I wanted stuff doing. I only got 3 1/2 hours sleep before waking up this morning at 10am so am tired now. Johan and Esther are going into Durham to see light thingies so Johan cancelled the evening call so I can sleep. Silly body not letting me get to sleep until 6.30am. Being nocturnal is slightly more natural for me but doesn’t work with society. My complete randomness now works even less.

Johan has promised to take photos of light thingies. I’m going to take photos of loom band bracelets tomorrow when I’ve slept more. Hoping for more time in chair this week 🙂

Wednesday 11th November, 2015 Danni

Whisper

Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

I can kinda speak again now, but only in a whisper. To get normal volume I feel like I’m shouting. Not ideal but better than nothing.

I’m writing this blog while on my way into Gateshead, at 11.30pm. Hoping that being out will make me feel a bit better as I’ve been miserable for a few days. It’s very bouncy and Johan is laughing at my typos.

I spent most of yesterday afternoon through to this afternoon asleep, with a couple of hours here and there in a drowsy state. It seems to have made me better physically at least. I’ve also made a new loom band bracelet that took a while but looks like a good design to adapt into a belt. For those who know loom band stuff, it’s a triple fishtail.

Tomorrow I see the CFS team. I’m hoping it goes well. Now in Tesco so it’s less bumpy, and there are broken Kindles again. I’m not buying my new one here 😛

Tuesday 10th November, 2015 Danni

Being Nonverbal Issues

Autism, Computers, Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

Since the care worker came on Sunday morning making me panic, I’ve been unable to speak (I regained it for a little bit during the early hours of Monday morning, but lost it again a few hours later when I struggled to wake Johan up to help me with various things). To make things more complicated, my hands are being silly so I’m not able to type as accurately as normal on my tablet, so it’s taking me a lot longer to say things using it than is normal for me (which is why I’m using the laptop to type this, as my touch typing still seems to be working). I’m also still panicking whenever I’m awake for a care call as I don’t know when or who it’ll be. This is not a good combination.

When I’m talking to Johan I’m using a lot of body language to communicate: nodding, shaking my head, shrugging my shoulders, using fingers for numbers or to select from options when Johan forgets to ask me a closed question. It’s definitely the fastest way to communicate at the moment. I also use a lot of gestures and made up signs to help express what I want, along with exaggerated facial expressions (Johan is more able to read mine than most people, but making them bigger means he’s unlikely to miss them or misinterpret them). We’re able to hold entire conversations this way, which is great when I’m not feeling up to using my tablet (such as when I’m very tired).

It’s less good when I need to communicate with someone else. The district nurse came this morning and Johan had to answer most of the questions for me, as it was taking me a very long time to type responses. That’s fine when he knows the answer (and to be fair he knows most of them) but he’s only human and he sometimes forgets important points or I need to bring up something else. I was often saying something as a response to a topic that ended a couple of minutes before, which made me feel awkward. It wasn’t horrendous, but it would have been a lot easier if I’d been able to speak at the time. The nurse was also using that patronising voice I hate, like I was a young child. I’ve noticed it’s used a lot more often when I can’t speak than when I can.

For the care workers it’s harder. Not only do I have to communicate, but I also have to cope with someone being in my personal space and touching me. Johan finds it very hard to cope with the calls and normally hides in his room, but I need him to interpret for me so he has to stay in here (I don’t get the choice of hiding if I want anything done). Yesterday morning he had his day service and the care worker was running so late we had to cancel the call as he needed to leave and there was no way I’d be able to communicate with them when they got here. I was asleep yesterday evening and this morning the care worker was incredibly loud, so I immediately panicked so wasn’t able to have anything done. You’d think that they’d know not to come into someone’s home yelling, but apparently not.

I don’t really know a solution. I can’t use my laptop all the time as it limits me to being on my back and eventually the weight becomes too much. I’m also yet to find a text to speech communication app that works with Chrome OS. I’ll still use the app on my tablet, but I’m constantly mistapping so I can’t set it to automatically speak when I select a button as I keep hitting the wrong one (or hitting them when I’m wanting to type something new). Yesterday one of the suggestions was dysmenorrhea when I was trying to type doing for an example of how bad my typing on there is right now.

In general I’m not coping very well right now. Very anxious, panicky and getting twisted thoughts that aren’t true but feel like they are. My mood has also plummeted and even penguins aren’t cheering me up. Johan is hoping this is temporary, maybe because I’m due a period, and I’m kinda hoping the same. It might be just down to the care situation though, in which case I’ll hopefully feel better once that’s sorted. I’m also in desperate need of sleep because I can’t manage at night because of the paranoia (if I close my eyes my brain makes me think someone is breaking in) and stuff happens during the day to wake me up. That’s probably also not helping. Physically I’m also doing worse than I have for a while, but that’s probably because of everything else. I hope things get sorted soon.