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.

Remember Remember?

Today is Guy Fawkes’s Day, where the entire country sets off fireworks and sets effigies of the Prime Minister with a pig on fire (okay, the last one might just be Brighton). I managed to go out on the ramp and see the higher fireworks from the official display at Saltwell Park, as Johan was raiding and we weren’t sure how we’d get down there if I went in my chair.

Blizzcon Goodie Bag contents: Messenger Bag, Psi Blade, Overwatch decal, Hearthstone luggage tag, Illidan badge pin, ETC model thingie, and a Diablo keyring.
Blizzcon Goodie Bag contents: Messenger Bag, Psi Blade, Overwatch decal, Hearthstone luggage tag, Illidan badge pin, ETC model thingie, and a Diablo keyring.

My Blizzcon goody bag arrived this morning and I am happy with it. Johan had already told me he was stealing the bag, but I get to keep the rest of the items including the Psi Blade. I have whacked Johan over the head with it as that’s what penguins do 😛 (He is okay with this as it didn’t hurt). I’ll probably attach the Diablo keyring and Illidan badge to my Trabasack. I’m really excited for Blizzcon!

Johan decided he needed a laptop for going to the day service he goes to (as nearly everything he does is computer based and there aren’t enough computers) so he bought a Chromebook today. I agreed to pay for half if I’m allowed to use it for blog posts and stuff when I’m in my chair, and he agreed so I’m typing this on the new Chromebook 🙂 Johan put the Overwatch decal I got in the Blizzcon bag on the laptop which looks awesome 😀

I found it funny that I got into my chair at 6.30pm and managed fine, including watching fireworks outside (with music and ear defenders), watching telly and being hoisted back into bed after 10pm, but taking my hoodie off while lying down made me feel really dizzy and ill. My body makes no sense to me. I hope to figure it out at some point 😛

Tomorrow is the start of Blizzcon so my plan is to change my sleeping pattern to fit it. Whether that works or not I don’t know 😛 Until then, I guess I’ll hang out and bed as normal 🙂

I Like Co-op

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 🙂

Computer Issues

I can’t remember what exactly I wanted to blog about today, but when I started up my computer to write a blog post and do a food shop, I got a lovely blue screen of death saying my bootloader is broken. Johan is currently sorting me out a repair drive so I can fix it, but it means I’m not able to do a shop in time for delivery tomorrow as it takes forever on my tablet (which I’m using to write this).

Today I get the payback from the outing. Luckily it’s purely just some extra tiredness, so I had a 5 hour nap earlier which will hopefully help (I’m still rather zombified). My arm is still a bit sore from the flu jab but otherwise I’m just at Danni normal levels of pain, nausea and blehness, which I’m used to. Luckily painkillers (or pain reducers as I call them, as they don’t kill pain just make it more bearable) are working so I’m a bit less grumpy than when I first woke up. The cleaner came today and sorted my room out a little bit, which was good.

On Thursday I hope to go outside on the ramp to watch the fireworks, as we should be able to see the official display from there without the crowds or ticket prices. Advantage of being up the hill from the park 🙂 I’m wanting to have toffee apples and some treacle toffee. Maybe also hot chocolate 🙂

I’ve spent a lot of money this month, more than I originally planned. It’s all been on good stuff though, like a hot water dispenser kettle as Johan is scared of normal kettles so I can have hot drinks (he actually made himself a cup of tea earlier!) and a Brita filter jug to see if we can make the water taste better here (I like the local water except from our tap, so we think it’s our piping or tap that’s the issue). It seems to make a tiny difference? The new kettle Johan wasn’t sure about until we got it, but he already really likes it.

I’ve also bought some winter waterproof stuff for my wheelchair- some leg covers that don’t stop me opening the door with my feet (my current leg cosy makes it impossible) and a cape that should be easier to put on than a coat (we’ve also lost my coat which is a bit annoying but this will replace it I hope). Not cheap but disability stuff never is, and I couldn’t find another option in purple that was cheaper so I’m hoping they’ll help.


I’ve also recently got into making loom band bracelets. It’s a lot of fun, and patterns that use a mini loom don’t hurt my hands too much (I can make two of them during a session, and only one that uses the full loom). I spent some of today organising my bags of bands into a container by colour to make it easier to plan what colours I’m using in the future. Johan has set me a challenge to make a loom band belt so I just need to find a decent design and then I’ll be working on that. I’m really happy to have found something I can do as my hands are too silly for crocheting or knitting, which I want to learn. Being able to put it down pretty much when I need to helps as well. As I’m late to the trend all the sets are really cheap which is awesome 🙂

Apologies if there are any extra spaces in the blog post. My tablet puts them in automatically after punctuation but I also add them automatically when typing. I’ve gone through trying to remove them but I may have missed a few. Hopefully tomorrow my computer will be fixed and I’ll be back to blogging on something a bit easier 🙂

Spoonie Raiding

Was talking to Johan today about how the last full progression raid I did (Firelands in World of Warcraft Cataclysm) I didn’t do too badly, but then got payback for ages so it meant I’ve never tried again (I’m also much more ill than I was then). During it I came up with the idea of Spoonie raiding, and what that would involve.

No longer than 15 minutes before a break.
No longer than 90 minutes a raid.
One raid a week.

Johan pointed out that it wouldn’t work at all for Mythic – Mythic Archimonde takes hundreds of attempts, and we’d fit in about 4 a raid 😛 I said we might get it down if we started now and carried on until the end of Legion (the next expansion).

Obviously this was never a serious suggestion, and even with such a short schedule it would be too much for me (I’m only just occasionally managing heroic dungeons, and we massively outgear them now so it doesn’t matter too much if I lose concentration, which happens regularly). I know there are spoonies that do raid, depending on their energy and brain fog levels. I wouldn’t be surprised if there were guilds specifically for spoonies (I know there’s at least one for people with social anxiety).

I think I might have to accept that I’m too ill for any kind of scheduled raiding. I’m lucky that I can pay WoW at all, even if it’s from bed. Still, the idea of a Spoonie raid with other people at my levels of brain fog amused me 🙂

Summer’s Here

And I’m lying in my bed like always. Have had the blind up and the window open a few times though 🙂

My sleeping pattern has been non-existent recently, but I’m hoping to get it fixed soon. Missed the evening carer for over a week by being asleep so not had any big things done. I woke up at 6am today so I’m hoping to manage to stay awake for the evening call, but I’m already getting tired and it’s only early afternoon. Silly body.

The big news I have is I’ve got a date for my hoist installation! It’s being installed the 2nd September. Johan had already planned to go to Insomnia 55 the last weekend in August so we were already planning to have me in the care home, so it’s worked out really well. I’m really excited at the prospect of getting out of bed without worrying about how I’m going to get back in 😛

Johan’s day service thing is going well. He’s really enjoying it, and it’s nice for him to have something to do that’s not looking after me. We’ve not sorted out care for me yet, so I’ve been mostly sleeping while he’s there (cause of broken sleeping pattern, along with needing cyclizine a lot) but they’ll bring him back in an emergency. The new care agency isn’t starting until the end of September now, so hopefully we’ll get things sorted before then, as I’ll need to be reassessed due to having the hoist anyway (most agencies insist on two carers for hoisting).

My ability to cope with sensory stuff is improving, to the point where I’m actually thinking my room is dark sometimes 😛 Have bought a light shade for my ceiling light to see if I can cope with having it on (main problem at the moment is it shining in my eyes above my bed). If not then I’ll get another lamp to put somewhere else in the room to increase the light levels when I can cope with it. Apart from 30 minutes in the morning, my bedroom doesn’t get direct sunlight and is sheltered by trees so it never gets that bright in here even with the blind up (my blind only reduces the light rather than blocking it).

Everyone except me is going on holiday 😛 Sammie went on holiday last week, Johan’s planning on going to Insomnia 55 as I said earlier, and Esther is currently away. I was a tiny bit grumpy about it when I realised, but now I’m looking forward to the chance to have a bath and get out of bed while I’m in the care home, and after I get home getting out of bed and maybe having a shower. It’s weird not having Esther here, but I’m glad she’s had the chance to get away. One day I’ll be well enough to go on holiday myself 🙂

I’ve managed to read a few books the last couple of weeks, which has meant I’ve caught up to where I’m meant to be for reading 50 this year. Mostly children’s books, but a couple of adult ones a well. I’m managing my computer several times a week so I’m going to start planning what I want to do on there when I get on, as sometimes I’m on but not really doing anything and then I kick myself when I’ve come off for not doing what I wanted. World of Warcraft is still my main game, and I’ve been working on reputations in Warlords and pet battles mostly.

I also installed Windows 10 on my computer and a different rom on my tablet. Windows 10 seems to be working well for me, as I mostly use my computer for games and web stuff now and they all work fine. I like the new start menu (finally removed Start 8) and it seems to run faster. My new rom for my tablet is CyanogenMod based, so I’m able to customise it more and it no longer has TouchWiz. Still got to work on it but it’s running faster and I’m on 5.1, which isn’t available officially yet.

Apart from my nausea and digestion issues (which are getting worse) I’ve been mostly stable recently. Still occasionally do too much and end up with payback, but I’ve mostly figured out my limits. The digestion issues are not good though, and I’ve still not managed to see my GP (with Johan being out 3 times a week and me being asleep during the day it’s been hard to arrange). Cyclizine is amazing even if it does put me to sleep, as it means I can at least keep my food down. My portion sizes are decreasing as I get full after less food now, so I’m a bit worried about weight loss (it’s hard to tell when I can’t be weighed, but my bones in my bum and hips are sticking out more). I’m going to buy some meal replacement bars since milkshakes are really not agreeing with me right now.

Otherwise I’ve just been doing normal stuff. Playing silly games on my tablet, bossing Johan around, arguing about wanting to do things for myself 😛 I did get new bodies for Nicky and Penelope (we used penguin magic to transfer them) as their old bodies were dropping bits everywhere. Penguin is now demanding a new body but as they don’t sell his anymore it’s being a bit harder to track one down. I also got a new blue Trabasack to use when I’m on puter or in my wheelchair (which will be happening soon! Yay!). I discovered part of the reason I struggled with being on my computer was the weight of the keyboard, so I bought a lightweight one with purple leds (as it can be dark in here) and it’s making it much easier.

The Advantages of Being Disabled

I want to make it clear that I’d give anything to not be ill and be able to do stuff for myself, and most of this list is not through choice, but since I’m in this position (almost completely bed bound and incontinent) I like to look at the positives of my situation.

  • If I’m in the middle of something, I don’t have to get up to go to the toilet. I just go where I am (I don’t have any choice in this as I have no control, but it’s great when I’m in the middle of a fight in World of Warcraft or similar).
  • I have all my meals in bed. Sometimes I even get fed.
  • I get to order people around to do what I want. (I do normally ask :-P)
  • I can wear pyjamas all the time if I want. All clothes are chosen for comfort first.
  • Nearly all appointments take place in my room. It’s very rare I need to travel somewhere, and when I do I do so lying down.
  • I have a cool electric bed that lets me raise my head, legs or even the whole bed at the touch of a button.
  • I get awesome drugs that would fetch quite a bit on the black market.
  • My lights are remote controlled.
  • When I can get out of bed, I never have to worry about finding a seat as I take one everywhere I go. With my Trabasack I have my own table as well.
  • I can drink lying down with my eyes closed using my Hydrant.
  • I don’t need to wear shoes if I don’t want to.
  • If it’s cold, I can always have my blanket. And electric heat pad. And penguins.
  • When I go to hospital, I take my own pillows and quilt with me.
  • I get paid to stay in bed all day.
  • I can nap almost whenever I want.
  • I never do the cooking. Or any housework.
  • I have a massive U-shaped pillow that holds me in place so I don’t have to use any extra energy to stay comfy.
  • I can’t be late for most appointments. And if I am late for a hospital appointment, it’s never my fault.
  • I’m not allowed to pick stuff up if I drop them. Someone else does it for me.
  • I can’t get sunburnt.
  • I don’t need to worry about catching public transport.
  • People aren’t surprised if I act odd- it’s almost expected.
  • I can go on my computer whenever I’m well enough.
  • I’m always surrounded by penguins.

Turning 29

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.