Whoopsie, Backwards

Things went well in the care home until they didn’t. A couple of nights they didn’t check on me frequently enough, causing my pad to leak (I hate that, it makes me feel really uncomfortable and embarrassed, which I’m normally not about being incontinent). Then one night they pretty much forgot I existed. Well, the nurse knew I was there and gave me my medication, but she didn’t let the night staff know (they hadn’t been in since I’d gone in) so they left me for 7 hours. People on Twitter ended up calling the care home (thank you!) and they eventually sorted me out (after 2am), but by that point I was dehydrated, my hand were red, cold and numb from the window being open, and I was tired and still needed changing into my night clothes as I’d been out that day. The only reason I didn’t have a pad leak was because I was dehydrated. It was horrible.

I’ve not been as well since. I really wasn’t well enough for my chair to come home, but we did it anyway because I needed to. I was meant to see my consultant on the 16th June but that didn’t happen as though I was told to be ready by 12.30pm for a 3pm appointment, the ambulance to take me didn’t arrive at mine until 3.20pm (and my consultant is super busy so they couldn’t fit me in later). Apparently we should have told them the appointment was time sensitive. I thought all hospital appointments were?! In a way it was a good thing as I wasn’t well and I was dreading the travel.

My 28th birthday I mostly slept. When I was awake Johan got me a McDonalds as I really wanted one and he’d bought me some cupcakes from French Oven which were nice. I got some lovely cards and Vivacia Dreams sent me some awesome presents πŸ˜€ I am so lucky πŸ™‚ Sammie also sang me happy birthday on Skype, which made me very happy.

Johan finally had his care assessment which said he has substantial care needs (same level as mine). He’s not too happy about it but hopefully they’ll provide the help he needs soon. They’re arguing over whether it should be learning disabilities or mental health who should cover him (as autism doesn’t fit either) but we don’t really mind so long as it happens.

We decided to get Sky Sports for a bit as we both like Cricket and Formula 1, and Johan is getting into football πŸ˜› While sorting that out Johan managed to get us a discount and get us 152mbps broadband (though we somehow get 160mbps download- Virgin Media’s false advertising :P). He also ordered a SuperHub 2 which has (after a couple of days teething problems) fixed our wireless problems. We’ll have to wait to see if it’s fixed the router randomly breaking issue, though I think it probably has.

I also bought a Chromecast. I’ve been considering it for a while, and wanting to watch YouTube on my television without a couple of minute delay (how long it takes using the TiVo box) pushed me to get it. I’m really happy with it, as not only is watching YouTube videos really easy now, but I can also watch Twitch streams and play games on it. It’s also really easy to stream TV shows and films so I’ve watched a few more episodes of My Little Pony and I’m hoping to watch Brave soon.

I won tickets to the Durham Jets Twenty 20 match on the 4th July. I was hoping to be well enough to go myself (wishful thinking mostly) but when it became clear I wouldn’t be, we contacted NatWest (who I won them from) and got them transferred to Johan (who already has a season ticket, but yeah). My friend Sue wanted to go, so we gave her and her mum a ticket. Unfortunately the cricket never got started due to rain, but I did get to meet Sue which was awesome πŸ˜€ I’m hoping to see her again at some point, and my goal is to be well enough to go to the cricket next year.

Vicky also visited as she was back in the UK for a little bit from Palestine. It was really nice to see her, especially as last time she was here I wasn’t really well enough to talk to her. She brought with her a copy of the updated version of her book, Caged in Chaos,Β which I’d been intending to get for Johan (and will get on Kindle for myself when that’s updated because I currently can’t read print books)Β Β and a gorgeous purple ring for me πŸ˜€

Otherwise I’ve mostly been Skyping with Sammie when I can and playing games with her, and having the odd medical visit (CFS team, who couldn’t do the transfer stuff because I wasn’t well enough; GP because of me drinking loads; district nurses due to bed sore on my ear) every so often. I’m resting loads, still getting the odd 16 hour sleep (not helpful for bed sore on ear), and hoping I start improving again soon. I am also slowly starting to accept I’m bendy, after Johan pointed out my arms bend backwards when I think they’re straight, and it looks like I meet the criteria for EDS with that and several other things. At some point I really need to list everything that may be relevant from my medical history (joint pain since I was kid, dismissed as growing pains for years; fainting as a teenager when stood up too long; stamina issues since childhood when walking; acid reflux since I was at least 5 years old; cuts and bruises taking months to heal; local anaesthetic not working; lots of other stuff) as what I thought was normal is becoming obvious that it wasn’t. Is hard though. It might not be EDS, but I want to find out as it’s genetic.

I’m hoping to fix my sleeping pattern at some point, as I’ve gone nocturnal again. Right now my biliary system is being annoying (gallstone-type pain) so I have to wait for that to calm down. Could be worse – I’m not screaming and distraction is working at least some of the time right now. Pain sucks.

I’m gonna improve at some point. Just a bit impatient for it to happen now πŸ˜‰

Super Sitting Success

I’m hoping to post the photos I took to go with this post at some point, but I’m not at home right now so will be when I’ve got more cognitive spoons to do so (I think I’ve got them online, somewhere) πŸ™‚

Stuff has happened. Lots of stuff. Bullet point time!

  • Payback from seeing my brother only lasted a couple of days. It’s been a lot shorter in general recently.
  • I saw the CFS team. They are going to help me with learning safer transfers next time they visit (after I’ve seen Dr Spickett).
  • I sat up independently on the edge of the bed! It was amazing and my heart didn’t start doing funky dances until after I was lying down for 30 minutes. It’s strange.
  • A couple of days after that, I had no dizziness. Dizziness has been a constant of my illness since the beginning. So I sat up again. And was fine. Then I decided to try standing, and after a couple of failed attempts managed it while wearing my green high heeled boots (I can’t put my left foot flat on the floor with my leg straight) and my zimmer frame.
  • Since I was standing and pretty steady with the help of the zimmer frame, I tried walking. And managed three steps! They were little steps, but I did it! Afterwards I took one step backwards and collapsed on my bed, but I walked!
  • I didn’t get any payback from that, though my dizziness did come back and hasn’t gone away again since (oh well).
  • I went to the local polling station in my wheelchair and voted. We’d forgotten to apply for a postal vote for me and it was a good thing in the end. I wasn’t really well enough but I managed it and wasn’t too bad afterwards πŸ™‚
  • Had visit from Sammie. I’ve been playing lots of Minecraft with her and talking on Skype with her but it was amazing to see her. We had a grown up discussion about something important she needed to talk about with me, then we had awesome mum and daughter time with lots of cuddles πŸ™‚
  • Had care plan review with someone from the care agency. Really overdid it during it (I could tell as I was struggling to answer questions from about halfway through). Got payback from that πŸ™
  • Johan had his care assessment finally. I did most of the talking as Johan can’t talk about himself. That was also too much but the payback (which was still happening from the last visit) only lasted a couple more days, luckily.
  • Sammie made me a purple penguin house in Minecraft, and herself an ice palace (inspired by Frozen) with a jaguar. She’s much better at building in Minecraft than me πŸ™‚
  • Our upstairs neighbour’s brother broke into their flat. It was horrible. I spoke to the police when it happened (during the middle of the night) then gave a statement to the police the next day. There was also repairs done. The noise made me worse than I had been for weeks for a few days and scared us.
  • Johan went to see the cricket a few times. I think he enjoyed it.
  • I bought a couple of new shinies. A new SSD for my laptop and a Kindle paperwhite to read on. Yay!
  • I’m now in a care home for just over a week. Came in yesterday and will be going home next Friday. This is so Johan can go to see his friends and family. It’s mostly good (though I still don’t agree with care homes).
  • I had a bath! It was amazing! First bath since I moved house πŸ˜€ I feel properly clean. My hair also looks like hair, according to Johan πŸ˜›

Tomorrow Johan goes to Glasgow the Leeds. I’ll be keeping in touch with him via Google Hangouts and Sammie via Skype. It’ll be the longest we’ve been apart since he moved in but it’ll be good for him (and I can do more thanks to the hoist and a bath!).

I’ve done so much in the last few weeks and I’m really happy πŸ˜€ Johan’s assessment result said he has substantial care needs and his provisional personal budget is similar to mine, which he’s finding hard to come to terms with but he needs the help. Hopefully it’ll make our lives a bit easier, as we’re hoping to join our care packages together so we can both get the help we need.

Happy Flappy Purple Penguin!

Update post (so I don’t forget in a few weeks/months/years when I need to remember stuff :P)!

  • I played lots of Diablo 3. It is fun πŸ™‚ I bought the Reaper of Souls expansion when it became obvious I was going to finish it πŸ™‚ I have now finished the story (including expansion) and when I last played it I was level 56 on my wizard.
  • I’ve started playing Minecraft again, on the Autcraft servers. It’s nice to not have to worry about neurotypical social constructs, and though most of the players are younger than me they’re really cool.
  • I got obsessed with Classic Alice and even took part in a Hangout with the cast. That was fun but rather draining πŸ™‚ I asked if they’d considered children’s books for future episodes, and now they are doing so πŸ˜€
  • Nutritionist came out to try and figure out my weight from my arm measurements. It looks like I’m no longer underweight. Yay! The Fortisips are working.
  • I managed to arrange Sammie’s Easter eggs for the first time in a few years. No feeling guilty when I find them under the bed 10 months later πŸ˜›
  • Good Friday was good. I had my hair washed. First hair wash of the year! Also had chish and fips for tea, which is a Danni tradition I like to keep πŸ™‚
  • Easter Sunday I soaked the bed by catching the end of the Hydrant tube under me and pulling it off. Johan had not long been asleep and so was really groggy and really struggled to get me sorted. That was very much unfun.
  • Later on I watched the church service on the telly. That was good. There was Indian dancing during the prayers. Then my TiVo box rebooted so I couldn’t watch any more. That was not so good, but luckily the service had finished by then.
  • Got payback from the Hangout/hair wash/bed soak. Felt really ill for a couple of weeks. Even ended up throwing up which rarely happens now with the heavy duty anti emetics I’m on.
  • 25th April was World Penguin Day. People sent lots of pictures of penguins for me and my waddle (apparently the agreed collective term on land- in the water they’re a raft). That made me happy πŸ˜€
  • 30th April started feeling much stronger than normal. Watched UP. Got annoyed at the TiVo box restarting lots. Cried a bit. It was a good film πŸ™‚ Later on had cuddles with Johan which made up for it πŸ™‚ Started pestering Johan to let me go in wheelchair. He said see how I am in a couple of days because he was worried about payback from watching UP and cuddles. We also took my curtain down so I could see outside again πŸ™‚
  • Yesterday was still feeling stronger, so had loads more cuddles with Johan. I also wrote the previous blog post (which was hard and emotional for me) and finished a 1024 piece jigsaw puzzle on my tablet that I’d started a few days earlier. The picture was of an Emperor penguin and it’s chick πŸ™‚
  • Today to Johan’s surprise I was feeling even better than the last two days. I got dressed in the morning in a rainbow dress, pink penguin socks, rainbow headscarf and cream cardigan. I was plotting…
  • The new U shaped cushion I’d ordered for my bed arrived. I ordered it with a lilac cover this time. I’m keeping the old one (which is rather flat now) as a spare, and I’m just accepting I’ll need to get a new one every year or so.
  • I also received a tube director for my Hydrant. It’s a neoprene cover for the tube with a bendy wire in it so you can angle it where you need it. I’m hoping it’ll prevent any more bed soakings.
  • After the cushion arrived (yay for delivery tracking that lets you know when it’ll be coming to the hour!) it was time for my big adventure- going outside! Johan helped me get into the wheelchair (though I managed to get up to sitting by myself with the bed’s help) and once I was settled in it and the worst of the dizziness had passed he took me out. We went down the ramp and I saw a butterfly and then as I wasn’t feeling amazing with the movement we stayed halfway down the ramp and I watched the traffic for a while. It was amazing! The sun felt warm on my skin, the wind was cold and it smelt really fresh. I was still feeling not too bad when I came back in, as I didn’t want to push it. On the way back I was able to see a bird’s nest (I could see it from my window in bed but wasn’t sure if it was a nest or not). I can still open our flat door with my feet πŸ˜€ The transfer back into bed was harder than the transfer into my wheelchair and I felt rather nauseous for a bit. The way Johan dragged me onto the bed we ended up kinda tangled in each other and we converted it into more cuddles for a few minutes, then he sat in my wheelchair next to me so we could have handholds without him restricting where I could lie on the bed. I’ve had such a good day and I’m the happiest Purple Penguin πŸ˜€
Danni outside in the sun with Penguin, Primrose and Poseidon
Danni outside in the sun with Penguin, Primrose and Poseidon

Diablo 3

As part of the World of Warcraft Annual Pass a couple of years ago, I got a free copy of Diablo 3. I wasn’t really well enough to play it, but now that Johan was playing the expansion and he said they’d made it a bit easier I decided to give it a go.

I’ve made myself a Wizard. So far she mostly runs around in a bra and not much else firing arcane missiles at various evil beings (and bookcases which hold gold instead of books). I’m hoping eventually she’ll gain some clothes as it’s got to be a bit cold. The story is interesting and the gameplay is easy enough on Normal for even my foggy brain. I’ve yet to come close to dying, and this is with me going pretty much blind during a boss fight (lasted about a minute – I just pressed my mouse buttons and when my vision came back it was obvious the boss had died a bit before). It’s impossible to fall off ledges and stuff, and I’ve rebound all my attacks to my mouse (a Razer Naga with 12 buttons on the side) so I rarely have to use the keyboard. I’m having fun and maybe my character will wear some clothes when she’s higher level.

Last week I had a date night with Johan. We got a takeaway and watched Despicable Me. It was a really good film and I was glad to see it. Unfortunately I’ve had quite a bit of payback since then and overall I’m not doing great. I’m not terrible either (can still get on computer and play some games) but needing a lot of sleep and having to take more medication than I really like to cope. A bit sucky but it could be a lot worse and I’ve been watching a lot of kittehs which has kept me very happy πŸ™‚

I’ve not been playing very much World of Warcraft recently, but when I have been in game I’ve been working on pet battles and getting the items from rares in Pandaria on Danni. Now I have decent gear (mostly from Ordos and from when I was still running flexi raids) the only ones I really struggle with are Jinyu and Pandaren at level 90/91, and both of them I can get down with a bit of luck with their casts (not healing with Pandaren, only one Torrent for Jinyu). I managed to get Glorious! not too long ago so now I’m only focusing on those with items I want (which is all of them that aren’t gear). Since a lot of it is just flying around looking for the rares it’s been quite relaxing.

One thing I’m happy about is the Battle.net launcher now lets me chat to people without being in a game πŸ˜€ I have a couple of friends I only talk to through Battle.net so being able to communicate with them even when I’m not able to be in WoW/Hearthstone/Diablo is awesome. Not that I’m actually using it much, but having the option is great. Yay for improvements!

The domperidone is still making me dopey. Because of this I’m now calling it dopeydone and it won’t get its name back until it stops making me so out of it. It’s helping a tiny bit with digestion (at least making my digestive system noisier) but not doing much for the nausea so I’m still needing cyclizine sometimes. The combination of dopeydone and cyclizine makes me really out of it and often sleep. Could be a lot worse though so I’m sticking with it for now in the hope the dopiness eases off at some point.

It’s currently Autism Awareness Month which I’m mostly ignoring. I did write a couple of tweets for Autism Awareness Day (2nd April) but otherwise I don’t plan on doing anything. I could have delayed my previous blog post until this month but meh πŸ˜› I’ve been having a lot of fun discussing people who lack autism with Johan though, and how weird they are and what a tragedy it is to lack autism πŸ˜‰

My sister Becca has been diagnosed with ME this week. It is not a surprise as such as she’s been ill for a while now, but still it’s sad as I don’t like her being ill. I’ve been lecturing her for a while to take it easy and stop pushing to do things, and she says she’ll actually do it now (she’s looked after me so knows what severe ME can be like). There’s definitely a genetic component to it, though interestingly Becca doesn’t have the hypermobility I have (nor can she touch her nose with her tongue, which everyone else can do). I’m going to try and support her as much as possible and hopefully she’ll learn from my mistakes and not become as ill as I am now. She told me she was bored, so I jokingly told her to start a blog. She actually did, and you can see it: waddlewddle.

Johan is currently defrosting the freezer. Turns out the fast freeze option has been on since we moved in, which would explain why the drawers had frozen solid. We’ve lost a bit of food but being able to use all the drawers again will be great and I did get an ice lolly which was nice πŸ™‚ This coming week we’ll be doing a big shop to restock the freezer and I’m hoping to write an email to social services asking about the hoist. I’ve also got various things to buy so that will be interesting. Hopefully I’ll start feeling a bit better as well πŸ™‚

Dopey Danni

My blog post to-do list is growing. One of them I’ve made a start on, but I’m really struggling to write it. Most of that is because I’m now taking the domperidone three times a day and it makes me really dopey. I can cope with it- it’s not the worst side effect I’ve had to deal with by a long stretch, but it does mean I have very little brain power for things like writing blog posts that aren’t just a stream of consciousness.

The dopeyness has meant I’ve not been up to much. I’ve been on my computer everyday but I’ve not even logged into World of Warcraft for a bit as it’s just too much. I’ve spent a lot of time watching kittehs and some watching penguins. I have caught up with Total Biscuit’s Hearthstone videos finally, which is something. I love his gimmick decks as they’re really entertaining, and even if my speech processing is poor (though TB’s voice is easier than most for me to understand) I can at least see what’s happening for myself.

I’ve had no speech myself for a few days. It’s starting to get annoying. The new AAC app is really helping with that, though when I’m on my computer it’s a little awkward to use as I don’t have speakers connected to it at the moment. What I really need to do is get the front headphone jack hooked up so I can plug my headphones in there, my speakers hooked up again and then figure out having the different programs going out of different audio outputs. There’s got to be an easy way to do it but my brain is too bleh to figure it out (and I don’t have the speakers in here at the moment).

I’ve started using HabitRPG. It basically is a to-do list turned into a game. Being stuck in bed I can’t add the usual stuff to it (cleaning, going out, trying to exercise more) so I’ve had to be a bit creative in adding my habits, dailies and to-dos. While I’m still getting used to it the domperidone is down as a habit to work on, but once I’m taking it reliably I’ll be moving it over as a daily. My to-dos have various things on it, including the blog posts I want to write. Some of them require help though, like getting my penguin pictures on the wall and contacting social services about the hoist. It’s fun and I’m part of the Nerdfighters guild which I got talking about penguins πŸ˜€

I accidentally wiped the data partition on my tablet while trying to update the Google Apps on it (I have them integrated into the ROM). Since I’d done that and Paranoid Android is currently in the process of reworking a lot of its features, I took the opportunity to try a different ROM out. I’m now on PAC-man, which I tried before but had issues with at the time. This time it seems to be working okay despite me being on the nightlies, and I really like some of the extra features. I also changed my font to Comic which made Johan facepalm but reminds me of Doge so I’m happy.

I can’t remember if I mentioned it here, but I discovered Johan had set the spam filter on our email server to automatically reject spam, and that it was definitely having some false positives of my email. Included in that was an email from EE, so there’s a good chance they actually responded to my email to them in December and it got eaten. Because of this, I’ve moved over to Google Apps for my email. Right now I’m importing all my emails from my other GMail account so I can have the few I still need to reply to in the right place. Since I basically archived all my emails from 2009 it’s going to take a while πŸ˜› I’m hoping it’ll be done by tomorrow. As I still have them all on the other account, I’ll be deleting all but the recent ones to try and keep this one a bit clearer. I wish there was an easy way to just import the recent emails, but forwarding screws up the replying (I tried) and there’s no date selection tool that I found. Some of the emails I’ve seen are from when I was living alone, and it really reminded me about how badly that went. I know I can’t manage living independently, but it feels weird to see emails about how I would forget to eat and stuff. Not that it’s much improved now, but at least with the two of us one of us has a chance to remember.

Since I’m going to be paying for Google Apps (in a free trial at the moment) I want to take advantage of things like the custom domains. Johan couldn’t understand why I wanted them, but to me it’s obvious. As he controls the DNS at the moment and I don’t have the details I have to wait for him to do it and I’m quite impatient as I can’t click the button until the DNS is changed. I have changed the logo to a purple penguin one which makes me happy though πŸ™‚

Primrose, my new microwaveable penguin, is fitting in well. She’s not quite as silly as the other penguins but I’m sure she’ll learn. She was disapproving of me changing my font on my tablet to Comic so I need to give her an education on Doge and similar things. She does help me with pain relief along with Penguin, and Penny and Po keep me company while they’re in the kitchen. Penelope wants a wheelchair so I am needing to find a penguin sized one (she thinks they’re cool).

Johan went out on Saturday to see some friends we’d made on Twitter who happen to be local. From what he told me it went well and he brought me back cake, which was amazing. Since Johan wasn’t too far away I was okay with being left, as he had money for a taxi if an emergency did crop up. With my carer coming though it was fine. He has discovered that if he uses his inhaler he can manage around cats much better. Turns out treating asthma helps πŸ˜‰ I’m trying to convince him to take his preventative inhaler twice a day as he’s meant to, so hopefully he will get less symptoms as that builds up in his system.

I’m hoping the dopeyness eases off as I get used to the new medication. Unfortunately it’s not having a great job dealing with my nausea so I’m sometimes having to take cyclizine as well, which really doesn’t help. It is making my digestive system more noisy than normal so hopefully it means it’s working to try and get things moving out of my stomach. Otherwise I’m going to be lying here pretty much useless for a while, and I don’t want that. I need to get into Minecraft soon to figure out getting to the moon, but that requires brain power I don’t have right now. Hopefully soon πŸ™‚