Jul 092016
 

I somehow can’t quite believe that I’m now 30 years old. As my life basically went into standby 5 years ago, I don’t feel much older than I did then.

Had an up and down month. Body misbehaving. Another period (I think there were 2 weeks between them). Neighbours fighting at night. Care agency problems. Meltdowns. Hypersomnia. Talking to awesome people online. Watching lots of penguins. Finally watching Star Trek: Into Darkness (a present Becca got me yonks ago). Overall I’m doing okay, but I still wish I could be doing better.

My birthday was really awesome. The best present I got was Sammie coming over for a visit! That couple of hours talking to Sammie in person has kept me going through all the bad bits. She’s so amazing and I’m incredibly proud of her. She also gave me light up penguins and a holographic penguin card that I’ll have to put up somewhere more permanently. I also got a Fluttershy soft toy, a colour changing egg light, a massiveΒ Candy ChaosΒ box (that was from Johan- he knows how to make me happy) Β and so many really awesome cards and good wishes. It was really an amazing day and I feel so lucky to have so many people care about me.

Another thing I got really excited about was the Post Pals party. I never thought I could get so excited about a party I wasn’t going to πŸ˜› Post Pals is one of my favourite charities and it was awesome seeing all the planning and then the photos and videos of the Pals enjoying themselves. I’m not able to send letters or gifts very often (writing letters/emails and choosing gifts are often too much for me) but I am able to bug other people to do so.

Saw the district nurses. Told them my pads are leaking, but as I’m already on the highest absorbency they can prescribe they’re not sure what to do. The same day they came out I got a new delivery and it turns out the company has changed them to be even worse. I’m now buying my own more absorbent ones to use while Johan’s at his day service and at night in an attempt to not need to change the bedding every day.

Was meant to see the community mental health team about coping with meltdowns since I can’t use my normal coping mechanisms (movement/loud music) but they couldn’t find a psychologist to come out so they didn’t come. I’m not sure what’s going on there now.

Saw CFS team. Told them have been up and down and other stuff, including that I still don’t have the right hoist slings or a shower seat yet. They’re going to try and chase things again and I’m to keep doing what I’m doing until I start improving.

Have been watching loads of penguins. The chicks are getting so big now! There’s even been a couple of rockhopper intruders recently (kings are visible lots but I’ve only seen rockhoppers a couple of times).

I’ve started loom knitting. It’s like loom bands but with yarn πŸ™‚ I’ve made a hat so far and I’m working on a matching scarf. The acrylic that came in the set I bought is quite scratchy, but I’ve read it’ll get softer in the wash so I’m hopeful that’s the case. I’m very slow at it and I have to take lots of breaks, but I’m so glad to have found a craft my hands don’t complain too much about.

I’ve also started on Duolingo. Concentrating mostly on French, but also learning German and Swedish for fun. Some of the phrases it gets me to say are interesting: two that are memorable are “Nous avons vingt enfants!” – We have 20 children in French, and “Ich bin eine banane” – I am a banana in German. Since “I am a banana” is one of the phrases I repeat when my brain is being silly and I’m trying to say something else. It’s almost as if it knew πŸ™‚ I’m doing okay at the reading and speaking, but my spelling (especially in German) and listening is terrible. The app can be a bit fussy on the speaking as well- I’ll say something three times the exact same way, but it’ll only accept it the last time. It’s fun and hopefully I’ll get back to being able to read in French and maybe know enough German and Swedish to be able to identify it.

There’s 11 days until Johan goes to Edinburgh, the day before going to Sweden. We don’t have a care home sorted yet as apparently my respite provision ran out in June and they didn’t tell us until after the date, despite us giving them plenty of notice. Johan is getting help from the day service so hopefully we’ll get it sorted soon. He’s definitely going though, so they need to sort something out as I can’t manage alone.

The care agency keeps sending a carer we’ve asked them not to send multiple times now. She hurts me when touching me and needs so much guidance for making food that the only thing I can have done is my teeth brushed, which is a waste of an hour call. One of my main carers has told the agency not to send her multiple times, and I had one of the supervisors come out and she also told them I didn’t want to have her, but she is still coming. It’s in my care plan that the carers will make phone calls on my behalf as I can’t do it. I also still don’t have a rota or my evening calls at the right time. I think we’re going to have to put in an official complaint as my wishes are being completely ignored and they’re making me more ill. Not sure how I’m going to do it but it’s not the first time they’ve done this.

Next week will be mostly sorting everything that needs to be sorted for Johan going to Sweden, and me resting lots so I’m able to get to whatever care home it ends up being. There’s also a church service I want to go to next week but that very much depends on my health. I managed to go vote in the EU referendum, but other than that I’ve not been out since May. (The leave result really scares me, as the EU has given us at least a small amount of protection against the Tory government. I think it’s only going to get worse from here but there’s nothing I can do about it so I’m trying not to worry.) Hopefully my body will calm down and I’ll be able to get out of bed and do more soon πŸ™‚

 Posted by at 10:23 pm
Jun 032016
 

The following blog post may not make any sense.

For some reason the Edinburgh Zoo Penguin Cam doesn’t work directly with Chromecast, which meant I had to ask Johan to stream the tab when I wanted to watch and wasn’t well enough to go on my computer. I got a bit fed up with that, and decided that I wanted an Android TV stick so I could watch when I wanted. After some investigation, the Amazon Fire TV Stick seemed the best (especially as it was Β£5 cheaper than normal) so I bought that. I’ve added some of my own apps and it not only works for penguins, but I prefer the Twitch app as well (displays the chat on the telly) and I can sideload basically any Android app I want on there. I’m glad I bought it.

I’m just coming out of a bad patch. I was confused by it at the beginning, as I’d been doing okay and then I couldn’t get into the living room and couldn’t even have hugs as I was too ill. I was also experiencing more abdominal pain than is normal even for me. The explanation arrived on Tuesday- my period had arrived. I’m not sure how long it had been since my last one, but I didn’t cope with it very well. Luckily I seem to be nearly done with it, so I’m hoping to go back to how I was at the beginning of May again.

I’m slowly replacing some of the stuff I use daily and is becoming raggedy because of this. This week it’s been my penguin pet cushion (used to support my arm in bed and my head in my wheelchair). I’d forgotten how big and fluffy they are when new. I’ll be keeping the old one as a spare, as they’re the exact right size and shape for me (and folding them works great for supporting my head) but it’s nice to have a new clean one. The other advantage of having two is I can have one in the wash while using the other one.

Poseidon also demanded a new body as his feathers were scraggly. The super soft fluffy fleece most ofΒ my penguins and cushionsΒ are made of is great, but when they spend all their time in bed with me they’re less soft and fluffy after a while. Since I was ordering the Fire TV on Prime Now and they sold the exact baby emperor penguin body that Po has, he got lucky and I was able to get him one (penguin magic was involved). He’s now big and fluffy and is very happy.

I managed to fix my tablet! I don’t know why the camera wasn’t working in Marshmallow, but I did a factory reset and reinstalled everything and now it all works. I’m so happy as it means I can now use video chat again and take selfies when I want to.

I’m a bit scared now there’s just over 2 weeks until my 30th birthday. I’ve got no idea what I want to do for it, though if I’m well enough to go out that would be amazing. Johan keeps asking what I want for a present and I don’t know that either. My life is very different to what I thought it would be, but I’m hopeful my 30s will be better than my 20s. I hope I’ll stop being mistaken for a teenager then as well πŸ™‚

I’ve been reading the Young Wizards series by Diane Duane recently. I’m currently partway through A Wizard of Mars. I’ve got the New Millennium editions on ebook, which I’m glad about as in A Wizard Alone there’s an autistic character that was portrayed really badly in the original book, but in the new edition it’s actually really good and he chooses to remain autistic when given the option of changing himself. I’d read a couple of books in the series years ago in the library, but it’s really good to be able to read them all in order.Β Dairine is probably my favourite character, and displays many autistic traits herself (though these aren’t identified as such in the series). The world has been a great one to escape into and I’m trying not to go too quickly as I think I’m going to be annoyed when I run out of books.

Feeling really bleh and drained now, so I think more rest is needed. Until I’m doing better, I think it’s time for more penguins. Penguins make everything better.

 Posted by at 5:10 am
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
May 022016
 

This is a post for Blogging Against Disablism Day 2016. Please visit the website to see the other posts. It’s a day late as it’s my second attempt at a post (thanks brain fog).

These are things I want to see. It is not exhaustive.

I want to see more people like me in fiction, as normal characters. Disabled, different, maybe chronically ill, but that being only part of what the character is about.

I want to see more progress in making things accessible for more disabled people. More ramps, lifts, alternative formats for information. More changing places toilets (toilets with a hoist, adult changing bench, plenty of room for a wheelchair and carers and other facilities for severely disabled people). Less blocking access, displays making it impossible to pass in a wheelchair, less unnecessary noise and strobe lights.

I want to see disabled people accepted for who they are. Not used as inspiration porn or pitied. Disability is a normal part of life so should be treated as such.

I want less overt and covert discrimination against disabled people. Less refusal to make reasonable adjustments. Less making disabled people jump through hoops non-disabled people don’t have to do.

I want to see more access information provided on websites, and the websites themselves to be accessible. I want that information to be easy to find, not requiring looking through layers of menus to discover.

I want people to see disability equipment to be seen for what they are, tools that enable people to do what they want easier (or at all). Wheelchairs and scooters are awesome and allow so many people to do more than they otherwise could.

I want people to be valued for who they are, not what they’re able to do. We all deserve a full, peaceful, dignified life, making our own choices as much as able.

I want variable disabilities to be understood better. Just because someone can do something at one time, that doesn’t mean they can do it the next time, or in different circumstances, or more than once.

I want the harassment of disabled people to end, especially by governments and the media. I want benefits to be easier and quicker to claim, without the presumption that we’re all frauds. We’re not to blame for the financial crisis.

I want to see disabled people living where they want, with the help they need to do so. I want to see hospitals only used when absolutely required and for the shortest period that’s needed. I want carers to receive the help they need to care for their loved ones if they want to.

I want people to be seen as individuals. We all have our own life experiences, likes, dislikes and thoughts. We’re not just a collection of diagnoses.

I want to see a nicer, more equal world. I believe it’s possible.

 Posted by at 1:20 am
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

Stickman Communications: When Brain Fog Clouds My Words

 Autism, Danni, Important Stuff, M.E., Physical Disability, Real Life  Comments Off on Stickman Communications: When Brain Fog Clouds My Words
Feb 052016
 

I’ve been wanting to blog about the communication issues I’m having, but not been able to. Luckily* I’m not the only one who has these problems, so I can just link to Hannah’s blog post about it instead. This describes what I experience pretty well.

http://stickmancommunications.blogspot.co.uk/2016/02/when-brain-fog-clouds-my-words.html

*I wish no-one had to experience this stuff, but I do feel a bit better knowing I’m not the only one.

 Posted by at 11:12 pm
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
Jan 012016
 

Happy New Year!

Belated Merry Christmas and Happy Newtonmas πŸ™‚ I had a good Christmas, followed by a short crash but luckily we got things sorted quickly enough it only lasted a few days and I’m back to nearly Danni-normal again πŸ™‚

This month has been up and down a bit, saw the community dentist the second time I tried (first time couldn’t get on the bus because the driver wouldn’t let me on because of prams) and have been referred for my teeth to be sorted out under a general anaesthetic as no other option for me. I went to Enchanted Parks as well and that was awesome. So many pretty lights and displays! Mostly been in bed otherwise but did get up when Sammie came to pick up her presents and talk πŸ™‚ I knew then that no matter what happened it was going to be an awesome Christmas.

On Christmas Day itself I watched a church service on the telly, opened many presents (thank you everyone who sent me cards and presents), had roast hog for dinner, along with Johan’s homemade roast potatoes which were the nicest potatoes I’ve ever had even though it was his first time, and watched the Doctor Who Christmas special which was awesome. A great day. I also spoke to Sammie on both Christmas Day and her 12th birthday which was the best. Totally worth the payback afterwards πŸ˜€

Anyway, every year I fill out a silly survey about the year that just happened. I’ve just watched the new year come in and I’m gonna do it now while I remember πŸ™‚

1. What did you do in 2015 that you’d never done before?
Get a hoist! Meant I could get into my wheelchair and go into Gateshead and Newcastle for the first time in a few years. Also started making things with loom bands.

2. Did you keep your New Year’s Resolutions, and will you make more for next year?
I managed 2 of 4, and most of my goals (including the 50 books read this year). I’ll make more in the next few days. I’m happy with how I did overall, as a couple were ambitious (and relied on other things happening that didn’t).

3. Did anyone close to you give birth?
Yes! More babies this year so a Facebook feed full of cuteness!

4. Did anyone close to you die?
Yes πŸ™ My good friend Ron died a few months ago, and my grandma died earlier this month. I was too ill to go to their funerals πŸ™

5. What countries did you visit?
I stayed in the UK, but did go into Gateshead and Newcastle for non-medical reasons! That was awesome!

6. What would you like to have in 2016 that you lacked in 2015?
I need that shower chair still πŸ˜›

7. What dates from 2015 will remain etched upon your memory, and why?
My memory is terrible for dates, so I’ll remember events (Sammie visiting, Ron and my Grandma dying, going out) but not exactly when they happened.

8. What was your biggest achievement of the year?
Going into Newcastle, being in my chair for several hours with the only payback being needing to sleep more. More of that please πŸ™‚

9. What was your biggest failure?
My health and my memory.

10. Did you suffer illness or injury?
Mostly just ME stuff. Got a rough diagnosis of POTS (too ill for a tilt table test) but I’ve had the symptoms of that since I was 12. Nothing new so that’s good I guess πŸ™‚

11. What was the best thing someone bought you?
Like I said last year, I appreciate everything that people bought for me. So many penguins and ponies πŸ˜€ One of my Christmas presents from Sammie is a heart shaped cushion with her on it. I think she’s abseiling but I might be wrong there πŸ˜›

12. Whose behaviour merited celebration?
Same answers as last year: Johan and Sammie πŸ˜› I think Esther has also done really well this year as well.

13. Whose behaviour made you appalled and/or depressed?
Still the government. Things are getting harder and harder for my friends because of them, and I don’t know how to help πŸ™

14. Where did most of your money go?
Same as last year: food, bills, disability stuff. I did buy a new cooker which was much needed.

15. What did you get really, really, really excited about?
This answer will be obvious to anyone who knows me: Sammie and penguins πŸ˜€ I can add going out to that list this year πŸ˜€

16. What songs will always remind of 2015?
Although I’ve listened to some music this year, I’ve not really listened to anything recent so I don’t think I’ve got a song that would remind me of this year πŸ˜›

17. Compared to this time last year, are you:
a) happier or sadder?
Mostly happier πŸ™‚ Had a few sad periods but I think overall being able to go out has boosted my mood loads, as has being in pretty regular contact with Sammie.
b) fatter or skinnier?
Fatter πŸ˜› As I was underweight, this is a good thing. I’m still not where I need to be but eating has been a bit easier this year. Still malnourished but continuing to work on that.
c) richer or poorer?
About the same.

18. What do you wish you’d done more of?
Going out πŸ˜› Glad I managed it though.

19. What do you wish you’d done less of?
Relapsing, though I did so less than 2014. Being anxious.

20. How do you plan to spend Christmas?
Christmas was spent talking to Sammie, watching telly and eating the amazing roast dinner Johan made me πŸ™‚ Next year, I hope to have the entire tree decorated (this year only managed lights and star, last year it was missing the lights).

21. Did you fall in love in 2015?
The babies! So cute! Especially Amy who came to see me πŸ™‚

22. How many one night stands?
None. Didn’t even try standing this year πŸ˜›

23. What was your favourite TV programme?
Doctor Who, Great British Bake Off and Steven Universe πŸ™‚

24. Do you hate anyone now that you didn’t hate this time last year?
Nope. Still don’t actually hate anyone. I dislike the government, but that’s different.

25. What was the best book you read?
What If? by Randall Munroe. Thank you Sammie for prodding me to actually read it πŸ™‚

26. What was your greatest musical discovery?
Google Play Music. They are pretty good at guessing what I want to listen to (though they do get it really wrong sometimes).

27. What did you want and get?
A hoist! Freedom at last! Also spoke to Sammie loads and got to see her. Some support for Johan.

28. What did you want and not get?
A shower chair. Apart from two baths in the care home, I’ve not been clean all year.

29. What was your favourite film of this year?
I’m torn between Big Hero 6 and Inside Out.

30. What did you do on your birthday?
Sleep mostly πŸ™‚ I think I spoke to Sammie as well. Opened lots of amazing presents (including a penguin balloon to walk!).

31. What one thing would have made your year immeasurably more satisfying?
Being able to get properly clean at home.

32. How would you describe your personal fashion concept in 2015?
Tops, leggings and pyjamas. Penguins were also involved πŸ™‚

33. What kept you sane?
This never really changes πŸ™‚ Sammie, Johan, penguins, and friends.

34. Which celebrity/public figure did you fancy the most?
I can’t think of any.

35. What political issue stirred you the most?
The welfare cuts again. Sanctions in particular are getting really bad.

36. Who do you miss?
I really miss talking to Ron. It’s not been the same being on Twitter since. He would have been so proud of Johan’s potatoes. I also miss seeing my friends and family, but talking online helps.

37. Who was the best new person you met?
Probably Marga and Amy. Amy is adorabubble!

38. What was the best thing you ate?
Johan’s roast potatoes. No contest.

39. Tell us a valuable life lesson you learned in 2015?
It will take several explanations before people will accept sitting upright is a bad idea. Especially nurses and care assistants.

40. Quote a song lyric that sums up your year:
Here’s a penguin, there’s a penguin and another little penguin. Fuzzy penguin, funny penguin, penguin, penguin duck. (Not actually a song, but I’ve sung it. The duck mentioned belongs to Amy.)

 Posted by at 1:01 am

30 Days

 Danni, M.E., NaBloPoMo, Physical Disability, Real Life  Comments Off on 30 Days
Nov 302015
 

I’ve managed to complete 30 days of blogging for NaBloPoMo. They’ve might not been the best but I got them done so I’m proud of myself.

Today has not been a brilliant day. I feel like I’ve come down with something and spent most of the day asleep. I’m hoping that it’s just a small setback and I’ll be feeling a bit better soon. Tomorrow Johan is home all day so I’m wanting to be awake for it.

Johan made me cheese on toast for tea which was yummy the first time I swallowed it. Unfortunately it’s not so nice the second and third times. I wish my body would digest food properly as I’m still bloated from last night’s dinner. Silly body. With that and a blocked nose making it harder to breathe I’m a bit grumpy today.

I’ve learnt some interesting things from my FitBit. On average, I wake up every 40 minutes or so when sleeping. No wonder I’m so knackered. The longest stretch I can go without waking up is about 90 minutes. I already knew I woke up a lot as I have to wake up fully to roll over, but didn’t realise it was that much. Activities that raise my heart rate above 100bpm include being propped up, rolling over, peeing, having my teeth brushed, watching television and moving my legs. Sometimes peeing and rolling over take it above 130bpm which I found interesting. I’m pretty weak but my heart is getting a workout. It also says I walk 50-100 steps a day which is funny when I can’t walk. The FitBit is useful for trying to keep an eye on the amount of activity I’m doing though.

I’m not going to force myself to blog everyday in December, but I’m hoping that I’ll be more in the habit of blogging more frequently. I’ve got a couple of longer blog posts I want to finish that take more brain power so hopefully I can get them done.

 Posted by at 11:56 pm