May 112016
 

I’m currently watching the Edinburgh Zoo Penguin CamΒ and there’s a baby Gentoo chick that’s been born. It’s so adorable, though we don’t get to see it much as the parents keep it hidden under their bellies. I also watched Penguin A+E last night and that was amazing. I love that they were taking such good care of the African penguins and they made the one that was starving big and fat again πŸ˜€

I think I’m not doing too bad at the moment. I’ve been in my chair more, going to Nando’s one night and last Thursday going out to vote then to the local shop. I’m going into the living room more frequently, and it’s almost tidy enough so I’ll be able to lie on the mattress in there (the daybed still needs to be built). I love being in the same room as Johan, so we can talk while doing our own things (him on his computer, me on my tablet). I think the weather calming down (and being nicer) has helped, as when it changes all my symptoms get worse, so when it was being really erratic I was in a lot of pain and very grumpy. I hope the nice weather stays for a bit, as I’m enjoying not being too bad for me.

Sleep has been all over the place. Sometimes getting very little, sometimes like yesterday sleeping for nearly 16 hours. This means I’m not able to plan anything, as I don’t know if I’ll be awake. That nearly 16 hour period of sleeping I did manage about 11 hours of actual sleep, which is a big improvement over the 5-6 hours I normally manage most times. I think I needed it.

My nausea levels have been a bit more bearable, which means I’ve been taking less cyclizine. I hate taking cyclizine as it makes me dopey and out of it, but I hate vomiting more, so as my nausea had been so bad the last few months I was taking it regularly. A downside we’ve found to not taking it is my appetite is back down to very little, so I’m not feeling hungry as much and when I do it doesn’t take long until I’m full. I definitely think it’s the reason I’m no longer underweight (one of the side effects for me is increased appetite, beyond that of just being less nauseous) so we’ll have to keep an eye on things. I’m not taking it unless I need it for nausea as I like knowing what’s going on and the brain fog is bad enough without it, but if it becomes an issue I’ll speak to my GP about it.

I’ve been working on my loom band stuff again recently, though many of them haven’t worked (I was making a bag and it fell apart as I was trying to repair a mistake). I have managed a purple penguin headband though, which I’m happy with. I’m hoping to look into loom knitting when I get some yarn as it’s very similar, but when looking for yarn I got completely overwhelmed so haven’t managed to get any yet. All I know is that chunky yarn is best for loom knitting a scarf, which is the first thing I want to try and make. I have got the attachments needed to make some loom band lanyards, so I’ll be trying that next I think. First though I need to sort out one of my boxes, as Johan managed to knock it over and mix all the bands up. The good thing is I really enjoy sorting so it’s been quite nice working on getting them organised. Still got some way to go, but I think they may be more sorted than they were originally once I’m done (one of the sections was glitter jelly bands and another neon bands, all in different colours, so I’ll be separating the colours out). I’m also partially through making a wallet, which will be awesome if I manage to finish it without it breaking before I’m done.

Last night I also watched the Eurovision Song Contest first semi final. I missed the first song as that’s when I was waking up, but Johan said I didn’t miss much. I liked all the sparklies, shinies and purple suits (so many awesome purple suits!) and Russia’s special effects in particular were amazing. I can’t remember what songs I liked, but I think at least one of them got through to the final (I really should have made notes). If I’m awake I’m wanting to watch the next semi final and then the final on Saturday, but just in case I’ve set them to record as I do like everything about it. I’ve been following someone on Twitter (@Scattermoon) who has been tweeting their journey to Stockholm to see Eurovision and it was amazing- I could imagine I was travelling with them. One day I’d love to travel across Europe by coach and train like they did πŸ˜€

It is ME awareness month/week/day this month (I think we’re currently in the week, and the day is tomorrow? I’m not sure). I’m not sure I’m up to posting anything in particular for it, but if I see anything particularly good then I’ll try and share it. ME is a horrible illness and some doctor’s still don’t believe it exists, or think it’s a form of somatoform disorder, when there’s now plenty of evidence that’s it’s a physical disease. There’s definitely a psychological component, especially since adrenaline can make symptoms worse, but that’s the case with most chronic illnesses. I’m lucky that mine seems to have stabilised now, but some people continue to get worse and can’t do the things I can.

The care agency seems to be improving a bit. The care worker who yelled at me and the manager(?) who came into my bedroom without permission or even telling me both no longer work for the agency. I’ve been told that only one manager (who knows me as she’s done my care calls before) is allowed to come to our flat for agency stuff, and she knows to phone Johan before coming. We also have an agreement I’m not going to have spot checks and that the key safe is only to be used for actual care calls. I have two main care workers now who do all my weekday calls and my Saturday morning call, but the other three (Saturday evening, Sunday morning and Sunday evening) are still random and I still don’t have Β rota to tell me who it’s going to be. Last Saturday evening one of my normal care workers did the evening call, and though she had to come early for it that was okay as I knew in advance and I preferred that to having someone I don’t know very well. The care worker on Sunday morning is a mystery, as I was asleep and they didn’t write in the book (and also arrived at 9.15am for a 10am call) but the evening care worker was someone I’d had once before who I get on with well and just seems to get things without needing everything explaining in detail. It was also the first evening call in months that was actually at the right time (5.30pm instead of 5pm). That makes such a difference as it means I use a lot less energy trying to explain things and dealing with everything. I think things with the care agency calming down is partially why I’m able to get into my chair and go out more. All I need now is a rota, the evening calls to happen at the right time and for them to contact us about changes and I might be able to stop worrying about it.

I managed to play a bit of the Overwatch beta last week, playing as Mercy (a healer). I’m not very good, but it’s the first FPS I’ve actually enjoyed playing, which is awesome. If I continue to get on the computer regularly then I think I’ll be playing it quite a bit. Johan didn’t enjoy it quite as much, so probably won’t be buying it (I’ve already preordered it as I knew from the initial announcement I’d probably like it, and watching people play it confirmed that for me) but that’s okay as I’m sure I’ll be able to find people to play with. At the moment I’m only playing against the AI but at some point I’ll be brave enough to play against real people.

This morning I played a bit of World of Warcraft, working on the legendary ring for Danni. I’d got to the part where you need to get documents and eavesdrop on the Horde with Garona, which is known as probably the hardest part of the whole quest chain. I’d already tried (and failed) to complete it for over an hour previously, but this morning I managed it in about 20 minutes, though I ended up cheating and using my flying mount to bypass everyone. After I’d managed that I did all of Hellfire Citadel in LFR, getting 9 tomes this week. Since I need 33, that’s not too bad and if I can get on the computer every week, I should be able to complete the ring before Legion comes out in August. I’m looking forward to the film coming out, and I want to go and see it in the cinema but that might be a little bit optimistic (though I’d take earplugs and things to make it less overwhelming). If I can’t I guess I’ll have to wait until it’s available to download and then I’ll watch it. I’ve got the prequel book to read so I’m hoping to finish that before the film comes out.

I’m happy I’m able to do more. I’m not massively improved physically, but those small amounts of improvements where I’m less nauseous, more able to be semi-upright and able to tolerate a bit more light and sound make a massive difference in how much I’m able to do. I still have to be careful, as last week I made myself really ill by wiping my own leg with a baby wipe (I was doing okay, then I wiped myself and ended up really nauseous, dizzy and shaking). I’m not sure why such a small thing triggered such a large reaction as I normally get a bit more warning than that, but it was a reminder that I do need to be careful if I want to keep doing the stuff I enjoy. Hopefully I’ll keep managing a little bit more as time goes on so I’ll be able to do some of the bigger things, like go to the cinema or travelling to Leeds. Until then, I’ll follow other people’s journeys and imagine taking them myself πŸ™‚

 Posted by at 1:25 pm
Apr 232016
 

The problem with sleeping a lot and randomly is that time somehow disappears so one day it’s February and then suddenly it’s the middle of April.

I’ve been very up and down the last few weeks. Still got issues with the care agency. ESA form is in so I’m waiting to hear if I’m still in the support group, and if so for how long. Some time spent on my computer but nowhere near as much as I’d like, and not at all for about two weeks until this week. I’ve not been in my chair much either, though did go into the living room for a bit and outside for 5 minutes to try and spot the International Space Station (and failed due to clouds) at the beginning of the month. I’m hoping to be able to go properly out again soon. Esther has moved out, as our flat was just too small for the three of us, especially with my health being affected by everything (she was a great flatmate, and her new place is better for work so I’m hoping it goes well for her).

Easter was good. Eggs and bunnies were bought and eaten. I managed to watch the church service on the telly which was awesome as I miss going to church. I’ve looked into inclusive church services that happen at a time that I can actually get to them (there’s no chance of me getting anywhere for 10am, especially on a Sunday) and I’ve found one that looks really promising, so when I have the spoons I’m hoping to email them about the stuff I need to know (how accessible is it, whether there’s a set routine or service I can learn and follow, how noisy it gets). Emails are hard even when I know what I want to say.

April is also autism awareness/acceptance month. I’ve done pretty much nothing for it, other than speak to my GP for help with my anxiety and ways of coping before I end up in meltdown (unfortunately happening all too regularly due to care agency stuff, like being yelled at by a care worker, or someone I don’t know letting themselves into our flat and into my bedroom with no notice, name or ID- the first I knew of it was when I rolled over and she was there, as I had earplugs in). I think this was the first time I’d told a doctor about my meltdowns, as when they happened once a year it wasn’t that important for them to know. It’s also in my care plan now, along with what to do (leave me alone and if Johan is in, get him- it might be scary seeing me hit or bite myself but I’m not likely to hurt myself too badly and the worst thing you can do is talk to me or try and touch me). Unfortunately most of my coping/prevention methods involve things I can’t do due to being so ill with ME, so I’m not sure what to do, especially when our ways of trying to prevent them (like telling the care agency not to use the key safe except for care calls, and to contact us in advance before turning up) are being ignored.

My GP was awesome as always. She seemed to understand that a meltdown is different from a panic attack (though I still get plenty of them, normally at night when the neighbours are arguing). She’s not got many ideas yet, but she’s going to see if there’s someone who understands autism who may be able to help me come up with some coping strategies. I don’t get why I’m so nervous about seeing her when she’s always so nice and tries to help, even though I’m not the easiest person in the world to deal with (yay neurological illness with no currently known effective treatment and communication difficulties due to autism!). She even sorted out an antihistamine prescription for Johan even though it was my appointment.

I’m still getting used to the side effects of cetirizine I’m taking for hay fever (even though there are no leaves on my tree yet there’s definitely pollen around). Mostly extra drowsiness and dopiness, though it might also be why I’m getting worse headaches than normal. Luckily it’s nothing that I can’t cope with and it’s worth it so my eyes aren’t as sore and itchy.

I got selected from the waitlist to buy Here Active Listening ear buds. They work well for what I want them for (turn down certain noises while still being able to hear what I want, such as turning down background noise while still being able to hear speech) but only when I can actually get them working with my tablet. Unfortunately the left one doesn’t seem to like turning on every time and I’ve had difficulties getting it to connect to my bluetooth, but I’m hoping that it’s just teething issues and they’ll work better soon.

I’ve also recently updated my tablet to Android Marshmallow from Lollipop. While doing so I took the time to encrypt it, so it’s now more secure (though I’ve also turned on smart lock so when I’m at home with it then it’ll automatically stay unlocked, as typing in the password every time would be too much for me). The only bug I’ve found is that the IR Blaster doesn’t seem to be working, which means I can no longer control my telly from my tablet. When I’m not able to press the buttons on the remote myself I’m needing Johan to do it for me. Hopefully that’ll be fixed soon, or I’ll have to look into a touchscreen remote control.

I’m getting excited for Overwatch coming out next month. I’m hoping I’ll be able to get on my computer to play it, as I preordered it. I’m probably going to be terrible but it looks fun anyhow. Today I managed to get my Diablo Wizard to level 70, which only took a couple of years. Hopefully I won’t take as long with my next character πŸ˜›

I’ve been enjoying watching the Penguin Cam at Edinburgh Zoo, which shows the gentoo penguins and their stone nests. Watching the penguins mate has been interesting, especially as they keep being interrupted by other penguins wanting to steal their stones while they’re doing so. There are quite a few eggs now and hopefully in the next month or so there will be some chicks. Until then there’s lots of stone stealing from nests, and occasionally the king penguins invade, especially at feeding time.

 Posted by at 12:54 pm
Feb 282016
 

Good news everyone! I think I’m over the relapse! On Wednesday I went out (into Gateshead for Burger King and shopping in Tesco because it was evening and there wasn’t much else open) and it was fun. I’ve also been able to go on my computer a bit more, which is making me very happy (not least because Smartflix is awesome and has tons of shows that I can’t stream on Netflix using my Chromecast without lots of config I’m not well enough to sort). I’m not that much better than I was, but the small amount I am is the difference between lying in a darkened room and being able to go on my computer and go out. Tiny things like being able to tolerate a bit more light, noise, movement and touch, and not needing to be completely flat. I’m so happy to be able to do stuff, as that relapse lasted a bit longer than mine usually do so I was scared it was becoming my new normal. The only issue now is I seem to be mostly nocturnal, which makes communicating with people and doing things hard πŸ˜›

One thing I have been doing is playing games. The rest of this post will be about them so it’s likely to be of no interest to anyone but me πŸ™‚ I’ve introduced Sammie to World of Warcraft (I’m sure it won’t be long until she’s better than I am) and recruit a friend makes levelling fast. I’ve not played as much with her as I’d have liked but hopefully we’ll get more time now I’m doing better. When I’ve been on when Sammie’s not I’ve been doing a bit of work on the legendary ring quest chain. I got my third elemental tablet thing so my ring is now item level 715. The next step is to get Blackhand’s arm which is kinda disgusting but at least it’s not going through poop. I’m hoping to work on getting Pepe soon and pet battles.

On my tablet I’ve been trying new games, and playing old ones. In DragonVale I currently have 248 of 269 total dragons, and of those currently available I need about 6. There’s a few more than I can get with help through the co-op breeding cave but the earliest I can complete the collection is during Bring it Back in December. I’m happy with the progress I’ve made though πŸ™‚

I’ve been playing a lot of Neko Atsume and recently got every single memento in the game. I already had every goodie so now I’m slowly working towards getting every theme and hoping they release new content. The cats are so adorable though so I’m really happy to play it.

In High School Story I’ve managed to complete all the current story lines, which I wasn’t expecting to do yet. I’ve got 15 classmate rares still to get (I’ve got the common gender of each type already), but I’m in no rush. I’m current working on getting a female hacker. I was frustrated that some of the goals seemed nearly impossible but they have been a bit easier recently so I’m happy there.

Hollywood U has been a bit more frustrating on the goal front, not least because they often don’t show up when they’re meant to so I end up getting less time (I missed nearly a day for this week’s). I’ve completed all the quests so I’m just working on the goals and getting both Critics, as they’re the new type and I’ve not managed to get either yet. It’s only been a few days though.

I’m still playing Kim Kardashian Hollywood, though I’ve come close to quitting a few times. The issues I was having seem to have been fixed, and though it’s still buggy it’s playable now. I’m level 39, number 1 on the A+++ list, and have mostly completed the quests, other than the most recently released ones. I try not to worry about the weekend events, so unless there’s something I really want as a prize I just do them as and when. During the week I also work on levelling the VIPs through Hangouts and jobs, though I’ve only ever got the special reward once. At least it doesn’t require much concentration.

A new game I’ve been playing recently after being invited by a friend is Happy Street. I’m still not entirely sure what I’m doing, but it’s cute (if a bit obsessed with poop) and I seem to always have something to do so I’m keeping it for now.

I’m also trying Britney Spear’s American Idol at the moment. It’s not officially available outside of New Zealand, which explains why none of my friends are playing it. The game is pretty fun but very laggy so there needs to be some work before it’s released more generally. It’s a pop version of the Kim Kardashian Hollywood game, but more purple. My character is called AdΓ©lie Gentoo and all my songs are about penguins πŸ™‚

One game I tried and then gave up on with Kendall and Kylie. That game is so slow I can read a chapter of a book in the time it takes to load (anything from 3 1/2 to 7 minutes). For a mobile game it’s terrible. Not only that, but since update 1.1.0 the game doesn’t seem to save correctly, so any progress is lost. More recent updates don’t seem to have fixed it. Luckily I’d already reached level 8 for the crossover stuff in Kim Kardashian Hollywood, but until they do some major work I won’t be playing any more of it. It’s a shame as I quite enjoyed the storyline.

Other games I’ve got installed on my tablet right now are AdVenture Capitalist, 80 Days, The Room 3 and a couple of different Sudoku games. I’m currently waiting for AdVenture Capitalist to be completable sometime this millennia (no joke), 80 Days I got annoyed with as I missed a couple of connections due to brain fog so I’m taking a short break before trying it again, and the Room 3 I’m playing in bits as it requires quite a bit of cognitive energy. The sudoku games are fun for me and a way of judging how I’m doing mentally- the logic required is normally very easy for me, so if I’m struggling to complete an expert puzzle or easy killer sudoku I know I’m not doing great. If I can’t solve one of the easier ones then I know I need to rest.

The last game I have is Hearthstone. For a while it was unplayable on my tablet, but I reset it while installing a newer version of my rom and it’s running better now. I’m mostly playing the Tavern Brawls when I get the chance, as I don’t know the current meta game well enough to work on ranked. Hopefully now I’m getting on my computer a bit more I’ll be able to play some Heroes of the Storm and other games, but with having to do adult stuff like paying bills, sorting money and food shopping when I’m on here as well I’ll have to wait and see if I can manage it more frequently.

 Posted by at 8:28 am
Jan 272016
 

A quick blog post as I want to blog at least monthly, but this month I’ve not been well even for me. January relapses are normal but this one is lasting longer than I’m used to.

I have a cold. I’ve had it now for several weeks, might now be months. I’m sleeping a lot, though my FitBit is telling me that I’m getting a lot less sleep than I realised (will sleep for a 13 hour period but only actually get 8 hours of sleep in that time, as I’m waking up so much due to pain/not being able to breathe/nightmares). I’m very lucky if I manage mood than an hour of uninterrupted sleep a day. I don’t even remember what a sleeping pattern is.

I’ve managed to go on my computer twice, which is less than normal for me. There are some things I can only do on my computer so I’m frustrated but pushing myself results in being worse. I spent 15 minutes in my chair at the beginning of the month to have my sheet changed but haven’t been well enough to go back in it. That small amount of extra dizziness, pain and exhaustion makes such a difference in what I can do. Anxiety because the care agency still isn’t doing what I need them to doesn’t help.

Good news is Johan almost has a passport. He went for the interview on his birthday and it went well so he’s just waiting for it to arrive. It’s awesome seeing him so excited. He’s planning on going to Sweden in the summer to play games very fast and see friends who also like playing games very fast. When my body has been behaving enough I’ve been eating the goodies we were given for Christmas. Gingerbread penguins and posh fudge are very nice, and not too bad when they reappear multiple times πŸ˜› I’ve also had McDonalds which I caused me less pain than most other foods, because my body is weird (only the lettuce caused issues).

I’ve got so many plans for when I next go on puter and go out. Taking my Deed Poll to the bank to get my name changed, and sending it to the people we’ve not managed to contact yet. Playing World of Warcraft. Talking to Sammie (I miss her the most when too ill to talk). Going for a meal with Johan for his birthday (he went out by himself but it’s not the same). Hopefully writing letters/emails, though they take more cognitive energy than I’ve had for a while. Having proper cuddles. I’m hoping this cold will be over soon, or at least I’ll have another slightly better day so I can manage something. I’m sure it’ll happen πŸ™‚

I’ve been so grateful for my friends the last few weeks. Sending me penguins (especially for Penguin Awareness Day). Giving me (online) Squishes. Being understanding when I disappear from Twitter and Facebook for a bit. My cousin Elka linked me a penguin shirt that had a picture of a penguin made up of lots of little penguins, and I bought that and it arrived yesterday. I can’t wait to be well enough to get changed into it. It’s purple and long sleeved and awesome.

This ended up longer than I expected. Brain dumps are definitely the easiest form of communication. Time to go back to sleep and hopefully stay asleep this time. I can hope πŸ™‚

 Posted by at 8:44 am
Nov 142015
 

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 πŸ˜› (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 πŸ˜€

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 πŸ™‚ The YouTube video tutorial is atΒ 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 atΒ 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.

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.

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 πŸ™‚

 Posted by at 11:55 pm