Anxiety Pwns Joo

Anxiety is ebil. Not being able to sleep at night because scared someone will break in or have a violent fight or other silly things that aren’t likely but my brain insists will happen when I’m asleep. I stayed awake for the morning carer and no-one showed up. It was about 12pm before I managed to fall asleep.

Being asleep most of the day means I’ve done nothing productive. Pain levels have been higher than normal and I’m not sure why. I need to do a food shop but it requires more brain power than I have right now. Decided I’m not getting out of bed until Friday and we have a plan for if I’m still hurting so much then.

I’m getting a bit obsessed with Neko Atsume. My current strategy is to buy the most expensive items first. I’m starting to get lots of mementos which is awesome πŸ™‚

Johan is helping by sitting in my room, dosing me up on painkillers and heating penguins. We found a hole in Nicky’s wing so I’ve bought her a new body and Patricia (Johan’s penguin) is helping in the meantime. I’ve noticed it’s the newer penguins developing holes which is concerning. I hope the new one lasts longer. I also took the opportunity to buy noise cancelling headphones, a second Rainbow Loom and 2100 loom bands for 46p. The advantage of getting into it late πŸ™‚

I’m ho
I’m hoping tomorrow will be better. At least there are penguins πŸ™‚

Zombified Danni

Had a very long sleep- from just after 8pm last night to 9.40am this morning. Unfortunately I’ve been feeling rather zombified and boaty today, so not been able to do much. What doesn’t help is my index finger on my left hand is sore from holding in the power button on my tablet yesterday. I’ve also been in more pain than is normal for me which is making me a tad grumpy.

Had two decent carers today. Yay! We got a phone call from the agency (Communication! Yay!) saying it would be a new carer and she’d be here about 10.30am as the one I was meant to have had called in sick, then the carer arrived just after 10am so we were a bit confused but it was okay. Had bacon for breakfast as Johan had dropped the last two duck eggs πŸ˜›

Spent most of the day reading articles online and blog posts, with a bit of tablet game playing as well. Luckily I’d backed up all my apps before changing the rom on my tablet so I didn’t lose any progress πŸ™‚

Ow. Someone just slammed the communal door and the noise has made me lose my voice πŸ™ Boo. Hopefully it’ll come back soon. Also made me nauseous but I’m hoping not to need cyclizine because I’m zombie enough.

The evening carer was one of my favourite ones from this agency. She made me salmon and chips for tea and helped me get into pyjamas and stuff. Was good. She’s meant to be coming on Friday evening so I was able to warn her I might not be in as seeing Becca. I hope the zombiness is gone by then.

I probably shouldn’t have started reading The Shock of the Fall by Nathan Filer yesterday. I thought it was one of my young adult dystopian books, not one about someone with mental illness. What I’ve read is good but maybe I’ll save finishing it for when I’m a bit less anxious and panicky. I read Among the Hidden by Margaret Peterson HaddixΒ before that which I’d been wanting to read for years. That was good and I’m wanting to continue the series.

Brains. Grr. Argh.

Whisper

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 πŸ˜›

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.