Was having an okay day until the evening care worker arrived at 4.15pm for my 5.30pm call with no advance notice. Was on her rota for 4.30pm. Ended up having a meltdown which is horrible and scary and exhausting. Will sleep now and try and figure out how stuff later.
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 🙂
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 🙂
I’m hoping tomorrow will be better. At least there are penguins 🙂
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 😛
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 🙂
Ow. Someone just slammed the communal door and the noise has made me lose my voice 🙁 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 Haddix 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.
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 😛
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.
Today is a bad day. Lots of panicking and no speech and being terrified someone was breaking in when home alone. Silly brain.
Here are some kittehs from the kitteh game Neko Atsume. My sister Becca has also adopted a kitten and asked me for a name so she’s now called Luna. I’ll post a picture of Luna when able to figure it out.
Title has very little to do with this blog post, but I just played the Tavern Brawl with Johan in Hearthstone where we worked together to beat the boss, and it was fun.
I have been awake since 10pm last night. I’ve now been awake over 18 hours so hopefully will be able to sleep soon. This isn’t uncommon after activity so I’m not worried but not sure I’ll be awake for the care call tomorrow morning. We’ll see.
I’m annoyed at Tesco. It’s Guy Fawkes night tomorrow, and as it’s the first in a few years where I can actually go out to see some fireworks I wanted some traditional goodies for the occasion, so sent Johan out to get toffee apples, treacle toffee and parkin. He couldn’t find any of them in Tesco at all, not even a sign that they’d sold out. I know that parkin is a regional cake (common in Yorkshire and Lancashire, so both Johan and I both grew up with it) so I am not too surprised he couldn’t find it, but toffee apples and treacle toffee are both national traditional treats associated with the day, so I can’t understand a massive supermarket not having them. He’s going to hunt in Newcastle tomorrow to see if he can find some there.
I managed to get my computer working again overnight. First issue was the bootloader deciding it didn’t want to exist properly for some reason, and it was so broken it couldn’t even be repaired, so I gave in and reformatted Windows 10. That fixed that issue, but then it wasn’t detecting the second SSD I have where I store all my games and stuff I want to keep (all the important stuff is also backed up online but it would have been annoying having to download it all again). It was showing up in BIOS but not in disk management or My Computer. No idea what caused that or why it persisted through several reboots, but one person online suggested running a memory check and even though it came back with no errors after doing so it was showing up in disk management to be assigned a letter. Makes no logical sense but I’m not complaining now it works.
Next problem was trying to get sound working. I have a Bluetooth adapter my headphones plug into and I just couldn’t figure out why it wasn’t working. I spent a couple of hours trying to figure it out, before realising I needed to pair it to the computer for it to work. I’d been wanting to talk to Sammie but I didn’t manage to sort it until an hour after she’d left for school. Hopefully I’ll catch her soon as talking to her is one of my favourite things in the world. Just need to be on my computer at a reasonable time 😛
The rest of the day I’ve been dopey. I’ve been wanting to sleep since this morning but it just hasn’t happened yet. Had an anxiety attack around midday today and I couldn’t figure out what was causing it, which wasn’t fun. Johan gave me cuddles though and I eventually calmed down. On top that I had the anxiety and panic caused by not knowing what is going on with the care calls so I’m feeling really mentally bleh and not coping with other stuff as well as I was. I did manage to get my bedding changed at the evening care call though, and being hoisted into my chair while it’s being done is much less exhausting and painful for me than changing it in the bed would have been. I’m grateful that’s an option now.
I’m really hoping I’m well enough to watch fireworks tomorrow (I’ll be wearing ear defenders and maybe ear plugs to deal with the noise). I’ve also got Blizzcon to watch this weekend so hopefully the anxiety won’t spoil things too much 🙂
At the end of September, the care agency providing my home care changed, as the previous agency lost the contract for not sticking to it. I’d had various issues with it, mostly due to lack of communication (I need to know what’s happening and when or I panic). I hoped this new agency would be better, but unfortunately it’s not been.
The new agency has only just started in this area, and they took on a lot very quickly. Unfortunately that meant they were incredibly disorganised. My care plan is a mess (the care workers struggle to find what they’re meant to do in it), it was missing the communication book for the care workers to write what they’ve done, and they promised to provide me with an email address but haven’t.
That was just the start. They’ve changed the times of some of my calls without informing me, and don’t send rotas so I have no idea who is coming or when. One morning call (written in my care plan as 10am) didn’t turn up until 12.30pm. Then a lot of times the carers just don’t turn up. There was one week where I only actually got 6 out of 14 calls because no-one actually turned up for the call. That is improving a little bit now (it’s been just over a week since the last missed call) but it’s made me very anxious and panicky. There have also been care workers showing up smelling so strongly of perfume or cigarette smoke it immediately makes me feel incredibly ill (the agency are aware that I can’t cope with strong smells and said all care workers are to read the sign on my door, which mentions it but often gets ignored). That’s on top of the problems of not being able to explain what I need every time and getting several different care workers each week, most of whom are new.
Johan hasn’t been able to contact them about any of this as he’s been too anxious, but he did tell his social worker when he had his review. The agency claimed he had been sending the carers away, but that happened twice on one day, due to that care worker smelling so strongly it took over an hour for the smell to dissipate (and Johan found it too strong, so it wasn’t just me). Most of the rest of that week no-one showed up with no explanation.
Physically I’m doing much better, but I’ve been doing a lot worse cognitively, at least partially because not knowing what’s going on with the care workers means I get incredibly anxious twice a day, and often end up having a panic attack, which was rare until this started. I’m now terrified to be left alone if a care worker is going to turn up, as I have no idea if they’ll know what to do and I’m not always able to remember things myself (mentioned in the care plan). I know me being autistic makes things a little more complicated, but just telling me when things change would be a massive improvement. If it weren’t for Johan needing the help I’d just cancel them all until I was able to cope again, but Johan doesn’t feel able to do some things and he shouldn’t have to.
This song is my current obsession. Steven Universe is amazing, and I love that all the gems are genderless and just use she/her pronouns for convenience 🙂
My mood has improved again. I think it was just being overwhelmed and grief. I’m still sad that Ron isn’t here anymore, but I’m trying not to dwell on it.
My birthday was good 🙂 I spent most of that day (and the week around it) asleep, so didn’t get to do much on the actual day, but I got thoroughly spoilt with cards, presents and well wishes. Sammie got me a helium balloon penguin that can go on walks 🙂 I kinda walked it around my bedroom and though it says on the label it should only last 3-5 days it’s still just about standing (my birthday was on the 18th of June). Johan got me among other things Brightwing, a soft toy Faerie Dragon (from World of Warcraft and Heroes of the Storm), which is amazing! Her tail is jointed and her wings posable so I’ve been able to balance her on the bars of my bed. I also got a penguin towel, DVDs, an awesome penguin book, pyjamas and some other stuff from friends and family. Esther got me a Big Hero 6 birthday cake as well. Danni the spoilt penguin 🙂
All the financial part of the hoist is sorted, so now I’m just waiting on the contractors to give us a date. I’m really hoping it’ll be soon as I wanna get out of bed!
Johan is finally getting some support for himself! He’s been referred to an OT to assess what he needs help with in more detail, but he’s also hopefully going to go to this day service in Newcastle to do computer gaming stuff like reviews. So long as we can get care arranged for me when he’s gone (it’ll be up to 3 days a week) it sounds like it’ll be really good for him (I would say it would be good for him regardless, but he worries too much about me for that to be true).
I’ve had my care increased again. I now get an hour each evening, as well as half an hour in the morning. The extra time is helping so much, and it means I can have more done such as my hair washed and food made. I’m not normally up to as much in the morning so half an hour will be okay as it’s long enough to get me sorted if I’m awake. The social worker has closed my case though which will make sorting out the extra care for when Johan is out interesting, but hopefully we’ll get it sorted.
My current care agency has lost the contract for this area, which was no surprise to us. It’s meant to be transferred to the new agency on the 10th July but since we’ve heard nothing from the new agency yet I’m not so sure that’ll be happening. I’ll miss the carers I’ve got now but hopefully the new one will be better at organisation and letting me know of changes (the current agency not doing so has made me more ill than I would have been otherwise thanks to panic attacks and anxiety).
I still have a long list of things that need doing. Still need to see the GP, still need to change my name with various people (I’ve now got a template letter thanks to Marga but Johan hasn’t given me an electronic copy of the Deed Poll for me to refer to when filling them out, and to print copies out of). I need to cancel a phone contract and transfer the number, and other little things like that. Bleh.
What I have managed to do is order a new bedside table (actually a storage unit) from Ikea, along with a large storage unit to replace the bookcase with missing shelves in my room and a new sheepskin for my wheelchair. I really like them and once they’re fully built and sorted (Johan’s built the bedside table but not the drawers to go in it, or the bigger storage unit) it’ll help so much to keep my room organised.
I’ve also bought a new cooker as I’ve been wanting to replace the old one for years as it’s not very good and the grill doesn’t work. The credit card is useful for that kind of thing (I’m definitely able to pay it off well within the interest free period so I’m not too worried in it getting out of control). It’s arriving today (1st July according to my tablet) and I’m really excited!
The other big thing I’ve sorted is changing energy supplier as the deal I was on was ending. Found one that’s quite a bit cheaper (and the direct debit is nearly half the old one) and the customer service is meant to be better. I’m currently over £500 in credit with the old one so getting that back will be nice. It’ll more than cover the cost of the cooker 🙂
My health has been a bit wobbly recently. My digestion is getting worse (main reason I need to speak to the GP) and the fatigue, weakness and spasms have been bad. Sensory stuff has been pretty okay though which I’m grateful for, so when I’m awake I can sometimes watch something on telly (I watched Wreck It Ralph with Johan, and Vampire Academy by myself a few weeks ago) or maybe read a children’s book on my Kindle. The fatigue has been annoying and Johan has said I’ve been more out of it than usual recently, but at least I can cope with some light and noise and things.
The spasms have been troublesome as they’ve made things like pad changes harder than they’d normally be, and I’ve had to be fed which is the one thing I still really really hate about being ill. Pain levels have been pretty bad as well but with coping with sensory stuff better I’ve been trying to distract myself. Of course after weeks of sleeping more than being awake, I’ve now been up over 28 hours so I’m either going to see an improvement in health or I’m going to crash badly. It’s partially been due to meetings with social workers and similar people so not all my fault, though when I’ve been able to I’ve been going on my computer. It’s a great distraction from the pain and I’d rather than do that than increase my pain killers if I can get away with it. Nausea has also been worse than normal, though that’s probably related to the digestion issues getting worse (I’m still bringing my tea up even though it was over 7 hours ago and I’ve had supper since).
I’m still playing my computer games. World of Warcraft had patch 6.2 come out, so I’ve been attempting to do some of the missions and quests for that the few times I’ve been on since. I’m also working on pet battles a bit as it doesn’t require that much concentration, being turn based (though I’ve sometimes phased out for long enough I’ve been kicked out of the battle). I bought Portal and Portal 2 for Sammie and her best friend during the Steam sale, and I tried a bit of co-op of Portal 2 with Sammie one evening (Sammie is better than me and it’s a bit too thinky for my foggy brain right now). Not really played any other PC games as when I’m on there I mostly want to play WoW or sort out important stuff like bills and shopping.
On my tablet I’m still playing High School Story, DragonVale, Hollywood U, Kim Kardashian Hollywood and AdVenture Capitalist. I’ve also started playing EZ PZ RPG which is an idle game so it doesn’t matter if I don’t log in for ages. I’m currently partying for a male writer in High School Story, breeding for Summer and Halo dragons in DragonVale, a female Superhero in Hollywood U, and very slowly doing quests in Kim Kardashian Hollywood. They’ve made Kim Kardashion Hollywood harder recently so I’ve been spending less time in it and no longer trying to get to the top of the A list as fast as possible, but the storyline is still entertaining so I’ll keep playing until I get bored.
Johan bought a Wii U recently so I’m hoping when I get a bit better I’ll be able to try and play Mario Kart. He also had to buy a new motherboard, cpu and ram for his main PC as his was blue screening and we couldn’t narrow it down to one component. It’s been a bit of an upgrade for him and it seems much more stable which is good news. Mine also blue screened yesterday but I think it was due to the webcam driver so it’s not quite as bad (especially as I don’t get on everyday).
I’ve got lots of things I want to do in the near future, and I hope I manage at least some of them. I was hoping to get out of bed for my birthday but that didn’t happen as I was too ill so I’m hoping to manage it soon (with Johan hauling me back into bed) as I really want to get back in my chair. I should probably be patient and wait for the hoist so I don’t risk Johan’s back but I don’t want to 😛
I’ve been trying to blog for ages but it’s just not been happening. Decided I’m just going to type words and see what comes out.
- My friend Ron died. He’d been ill for a while and was 70, but as he was a good friend it hit hard. I’m glad he’s not in pain now, but the selfish part of me wants him back. Being on Twitter (where we met and talked) isn’t the same now. I was planning on visiting him. I wish I could have gone to his funeral.
- My mood hasn’t been great. I’m not depressed, but I’m less able to cope with stuff and my anxiety is really bad. My ME hasn’t been too bad for me, and I’ve been able to do some stuff but I want more. I want to get out of bed. I want to manage my computer everyday, not just some days. I want to go outside. I want a shower or bath. I want to not feel crap all the time.
- I did watch the Eurovision final. That was good. I particularly liked Serbia.
- Had meetings with care agency and social worker. My care has been cut a bit, but might be going back up a bit more again in a couple of weeks as now I don’t have enough time. Care plan finally has a list of tasks and says carers are to prompt me rather than ask me what I want doing. If my stomach would cooperate I might be able to manage to eat more. Discovered the care agency have been breaking the contract with my care and rota.
- Still not seen my GP. Really need to sort that out as I’ve been wanting to see her all year. Keep forgetting to ask the carers to phone.
- No word on the hoist yet. Social worker has said she’s going to try and find out what’s going on. Will see if that happens.
- I applied for and got accepted for my first credit card. I mostly want it for the payment protection, but the 19 months interest free on spending will be useful for getting the stuff we need like a new cooker. I just need to be strict about getting it paid off, which I should be able to manage.
- I still need to change my name with various people. Bank and DWP are the two main ones. I don’t know how to write letters anymore. This is a problem.
- We bought a new washing machine. It is much much quieter than the old one.
- The drawers in my bedside table have collapsed. As that’s where I keep my meds and stuff, I think I’ll be getting a new one when I next get DLA (or that credit card).
- I told my social worker I’m genderless. It felt weird, and I’m not entirely sure she understood. Also told Sammie, but she got what I meant pretty quickly. Sammie is awesome.
Gaming stuff below, feel free to ignore:
- Decided to sell glyphs in World of Warcraft. I hurt my hands milling. Now thinking I’ll wait until patch 6.2 to bulk make glyphs due to this. It is giving me a decent income though, along with selling enchants, despite only getting on a couple of times a week.
- I failed the silver proving grounds for DPS on Danni several times. As Johan doesn’t have a DPS spec on his priest, this means I can’t do heroics with him (I have silver healing but don’t feel confident enough to heal strangers). I really want to finish the inn quests but at this rate I won’t manage it.
- I’ve really enjoyed the girl gamer storyline in High School Story (level 20). I think a game similar to that quest line should be compulsory for kids to play (preferably before they discover 4chan or Reddit). I’m currently partying for a Hip Hop girl and it’s hard 😛
- I got the Fairy Tale girl in Hollywood U! Currently doing this week’s quests and trying to party for a Fantasy guy. I bought Rok and Song and will buy Ilyria when I have more money. My campus is level 31, my MC is level 54 and most of the rest of my entourage is level 15 or above. After the Fantasy guy I need to party for both Broadway guy and girl, but once I’ve got them I’ll have them all (until they release more).
- There’s been an update to AdVenture Capitalist, so I’ve got more to do on Earth, plus the Moon has been released. The moon was so slow it was boring at first, but they’ve added some extra boosts and goals and it’s not as bad now. I currently have 86 duotrigintillion Angels on Earth, and 36 quadrillion on the Moon.
- I reached the number 1 spot in Kim Kardashian Hollywood for the second time, and also number 1 in the top couples list. I reset again, and am now climbing up the A list for the third time. I dropped down the top couples list so as this weekend is a dating event I’m going to see if I can top it again.
- In Dragonvale I’m currently trying for a Butterfly and a Dodo dragon. I have a Snowflake dragon for the cooperative breeding cave in the hope I’ll get a second one for breeding at some point. I’m getting my second type of galaxy dragon once it’s finished breeding in a couple of days 🙂
- I’ve reached rank 16 in Hearthstone with my Messy Priesty deck. Considering I only put cards in there based on how cool I find them, it’s working remarkably well. I have bought all of the Blackrock Mountain adventure but instead of fighting Ragnaros (the next boss I need to beat) I just keep doing the mage class quest over and over as it’s fun.
- I’ve done a little bit of playing in Diablo 3, but when I’m on my computer and not in WoW I’ve been trying out Heroes of the Storm. I’ve bought Jaina and Li Li and will be buying Tyrande as soon as she’s on sale. I really like the support style that Li Li has, so I was super happy when I got the gold to buy her 🙂 I’m still only playing the training maps but I hope to play some real games with friends at some point.