Being Nonverbal Issues

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.

A Cup of Tea Solves All Problems

Well, maybe not but it does make me feel better.

I had the worst care call with this agency so far this morning. The care worker scheduled to come for my call phoned in sick, and as they’re understaffed the supervisor on call came to do my call. She was incredibly loud, and worse than that had her phone ringtone set really high so every time it went off I felt really ill. And it went off several times. I was hoping to have my teeth brushed and was considering asking for breakfast, but the phone going off so many times so loud right next to me meant I lost speech and panicked completely, so Johan had to ask her to leave. Due to the panic attack I ended up sleeping most of the day. I understand she needed to be contactable but after the first couple of times of me showing obvious signs of distress (hands covering ears, face scrunched up, curling up into a ball) I would have thought she’d have at least turned it down, but nope. And she’s meant to be one of the more senior members of staff.

This evening’s call was much better. A new care worker, but she actually read the sign on my door and was quiet. Johan helped explain what to do as I still couldn’t speak and was still rather anxious, but she listened and did what was needed. We’ve asked her to tell the agency we like her so we want her more often. She was surprised at how many different people I’ve had coming for my calls (apparently you’re not meant to get more than three different care workers a week- I’m getting at least 7) so understood why I wasn’t coping. She’s also going to ask for a rota for me as even just knowing who’s coming and when will be easier.

I’ve spent most of the evening playing games on my tablet and reading What If? by Randell Monroe. I’d bought the book for Sammie last year and she was really surprised when I told her last week that I’d not read it yet, so I bought the Kindle version for me. I’ve read the blog but it’s nice to have them all together, and I’ve seen a couple of questions I’d not read before. My laughing at the book made Johan interested, so now he’s reading it as well on his iPad. I had cheesy chips for tea which I’d been craving for a while.

Johan made me a cup of tea this evening! I’m not 100% sure, but I think it’s the first time he’s ever made me one. He’s made me hot chocolate a couple of times before, but he’s scared of normal kettles so it was a special thing. He’s not as scared of the new one cup kettle though so hopefully I’ll be able to have tea more often. Unfortunately the milk we had was bitty (the use by date was tomorrow so we thought it’d be okay) so he had to use the UHT milk I keep in for porridge but even with that it was lovely and made me feel better 🙂

I’ve got loads of Blizzcon panels and eSports to catch up with, but I’m taking a break today as I’m not feeling up to it after this morning. Hopefully I’ll get through them the next few days. I’m glad I saw the World of Warcraft Q&A yesterday, as they were the best questions asked so far, and Red Shirt Guy was first again! Finding out they’re just letting us switch specs whenever we like rather than having to choose two out of three (or four if you’re a druid) made me really happy. Johan and I both want to play more Heroes of the Storm when I’m up to it as it’s loads of fun.

I’ve got nothing particularly planned this coming week other than the CFS team coming out on Thursday. It’ll be the first time I’ve seen them since I got the hoist so it’ll be good to see if they can help me plan how I’m going to get out of bed more without risking going backwards. It would be easier though if I wasn’t so anxious from the care agency though as it takes so much energy I’d rather be using on things like getting up more or being on my computer. If it carries on much longer I might have to ask about going on direct payments now the council is able to manage them for me (which wasn’t available the last time I tried it). Hopefully there’s an agency in the area that can meet my needs as I just need consistency, communication and a bit of understanding of how things affect me.

Blizzcon!

I am super tired thanks to bad sleep and trying to watch Blizzcon, but I am happy 🙂

Played some Hearthstone earlier for the Co-op Tavern Brawl which was awesome (luckily Sammie is understanding when I have very little concentration). Also watched Doctor Who with Esther which was good. Osgood! 😀 Also had pizza and scone and time with Johan.

Favourite announcement from Blizzcon so far is the new transmog system for WoW. I knew that Loremaster would come in useful for something 😛 They’ve even managed to convince Johan to keep his subscription when just yesterday he said he was taking a break and maybe giving it up 😛

I’ve not really seen much Diablo 3 or Starcraft stuff yet. I may have pre-ordered Overwatch as having watched Hafu and Trump playing on the beta I know I’m likely to enjoy it if well enough. I’ll probably buy the new Hearthstone adventure once I’ve completed Blackrock Mountain (I got as far as the mage challenge I think and just spent hours playing that). I already love Heroes of the Storm so I’ll be trying to spread the Cho’Gall virus with Johan 😀

I’ve got tons of stuff to catch up on but the vods are available for 2 weeks. Might take me that long to recover 😉

Oh No!

The good: Blizzcon started today, I had a nice care worker this evening, and I finally have my World of Warcraft posters up.

The bad: I slept most of the day, yet needed cyclizine so I need to sleep again now, meaning I’ll miss the rest of today’s Blizzcon stream. At least I saw the opening ceremony and all excited for the rest 😀

Take care. I have my Murlocs and Brightwing watching over me tonight with the penguins.