Dec 252014
 

To all my readers and friends, Merry Christmas! Or if you celebrate something else or nothing at all, I hope you have a wonderful day!

I’ve had an awesome Christmas so far. Yesterday Sammie came over for a bit to pick up her presents, which meant real life hugs and squishes were had πŸ˜€ Best present ever!

Today I’ve been completely spoilt with masses of presents, from lots of family and friends. I’ve been unable to get all mine to others sorted in time for Christmas this year, but I’m hoping to get those I’ve missed within the next week or two. My favourite was a gift from Sammie- she made a ornament of us two as penguins, me being purple and her being pink, hugging each other. Me being a purple penguin and her being a pink penguin has been our thing now for many years, so it means a lot to me. She also got me new penguin bedding and a matching cushion which are super cute πŸ˜€

Johan had bought me a telly for Christmas a few months ago, but surprised me with a Pingu ball (Hafu Pingu rather than telly Pingu), and Rarity, Rainbow Dash, Fluttershy and Twilight Sparkle soft toys. My sister Meggy had visited a few days ago and she gave me an amazing super soft penguin which I love to stroke. My other sister Becca gave me some awesome penguin pyjamas and penguin stickers. Esther gave me some penguin fuzzy socks (I love fuzzy socks!) and an awesome penguin Christmas jumper. Other presents included penguin stationery, a loom band penguin and money/gift cards. Very very spoilt Danni πŸ˜€

I also saw my brother on Christmas Eve, which was a lovely surprise. I’ve spent most of the day on Skype with Sammie, sometimes playing Minecraft (with her and her friend), sometimes just talking. I’m so grateful that I’m well enough to speak to her, be on my computer, listen to a few Christmas carols and songs and hopefully later have Christmas dinner. I even managed to speak to my mum-in-law on the phone for a minute. Now is time to rest and hopefully I’ll continue to have a good day πŸ˜€

 Posted by at 5:56 pm
Nov 262014
 

Less sad today. Still don’t know why I was yesterday but never mind. Today was an okay day, though had an unexpected visit from someone wanting some blood, sent by my GP. I’m not entirely sure why but went through with it.

There is so much I want to do in WoW and I’ve not enough time/energy to do it all πŸ˜› I’m so grateful I’ve been able to get on my computer so often though. I also played some Minecraft with Sammie and her friend which was fun, even though my sound sensitivity made it more draining than usual. There’s My Little Pony comics on Humble Bundle I might have to get as presents.

Fed up of the pain from eating. Is so tempting to stop completely, but I’m already malnourished and losing weight so it’s a bad idea. Today it was plain chicken breast and salad that set it off. Yesterday a sandwich (and later on a wrap). The day before, sweet potato chips and a milkshake. Pretty much anything that isn’t pure sugar and that’s dodgy too. I know wholewheat and really fibrous stuff is the worst, as it just clogs me up rather than helping things along, plus the pain is worse. Yet they include some of my favourite foods πŸ™ When I’m well enough I should probably get some tests done to find out what’s going on, as even with the domperidone I’m still bringing up bacon from yesterday’s wrap.

What’s it like to be pain-free? I don’t remember. I’ve been in pain of varying amounts since I was 5 with no real let up. Maybe earlier, but my memory is fuzzy from before then. When I was a kid it was mostly reflux and joint pain (dismissed as growing pains, though they didn’t stop after I stopped growing). I didn’t even know it wasn’t normal. Now I’m just relieved I can get it down to bearable levels with tramadol. Dunno what I’d do if I couldn’t, other than be lying in bed unable to do what I can now. I’m grateful I can do what I can.

Penguins are awesome. Saw baby penguins on Facebook today, sent by a friend. They took away the rest of the sad from last night. Sometimes I just need to remember to be more like a penguin. Noop Noop!

 Posted by at 10:42 pm
Nov 242014
 

A blog post not written in the middle of the night?! Madness!

Resting in bed after sitting up, super happy but dizzy and tired.

Resting in bed after sitting up, super happy but dizzy and tired.

Today I have spent a lot of time on my computer. I have played Minecraft and WoW, ordered stuff I needed online, sorted out general stuff and done other computery things. As I was feeling okay this afternoon I decided to sit on the edge of the bed (with Johan helping to hold me up). My treatment team want me to do this as much as I can (without overdoing it) to try and rebuild my tolerance of being upright.

I managed about 30 seconds (we weren’t counting) and hugged Johan (it’s much easier when upright!). No photos of sitting up as Johan was busy with me, but I took one about 10 minutes after while resting again. My heart rate took about half an hour to get back down to normal (and my normal is pretty much tachycardic itself, around 100 beats per minute) but I felt okay to go back on my computer, which was good as Sammie was back from school and I wanted to talk to her a bit πŸ™‚ Today has been a very good day πŸ˜€

I’ll have to see how I am over the next few days. I also had a small wash and change of clothes and bedding this morning, so I might have been a bit silly doing them all in one day. I’m hoping it’ll be okay, as I’ve felt well enough to try sitting most of the last week (only when I didn’t sleep well did I feel too crap) and I do feel like I’m starting to improve. The last few years I’ve relapsed either at the end of November or the beginning of December, but I’m hopeful that this year will be different.

I do need to do a food shop though. I have a Wiltshire Farm Foods delivery coming on Thursday to give me a few meals I can have (plus some pureed sandwiches that I actually like that I can have if I can’t chew) but we’re getting low on other food to last until then. Since my eating is already pretty poor this isn’t a good thing. My digestive system still hates me, and I’m not particularly happy with it (it was being annoying this morning, meaning Johan got less sleep than he should have) but I’m getting used to that. If I carry on having good days I might have to see what else I can do πŸ˜€

 Posted by at 5:13 pm
Nov 212014
 

I was hoping to be more with it and awake today than I was yesterday (I’d not got much decent sleep as there was a dog whining for hours). Unfortunately that didn’t happen, and I spent most of the day asleep, missing the time I’d planned to go into Minecraft with Sammie and her friend πŸ™ I did get on eventually, and we played a bit, but I’m annoyed I was asleep so much πŸ˜›

It also means I’m nowhere near to fixing my sleeping pattern. Nevermind πŸ˜› I’m playing World of Warcraft at the moment where there’s loads of stuff for me to do. The problem is choosing what to do first πŸ˜›

I had an accident that required my bed to be changed, which made Johan very meowy. Luckily he was already awake, as if he’d been asleep he would have been even more grumpy. I’m very grateful I have a spare U-shaped pillow.

This cold is reminding me it’s still here. Feeling all bunged up and headachy today. I think the sitting up on the side of the bed is on hold until I’m a little bit better. I’m glad I’ve not relapsed though.

I’ve got a couple of books I want to read. If I’m able to stay awake after coming off computer tonight then I think I’ll start one of them. I wanted to read 50 books this year and I’ve only managed 32, so I’ve got a lot of catching up to do. I’m so glad I’m able to read now though πŸ™‚

 Posted by at 11:00 pm
Nov 152014
 

For some reason Java keeps crashing on my computer when I’m running Minecraft. Very annoying but I’m not with it enough to fix it today. Maybe tomorrow.

I’ve played Minecraft with Sammie today (when I could stay in) and then went into World of Warcraft for more levelling. The queues were much shorter today (about 20 minutes) and there was a lot less lag. Yay! I’ve managed to get to level 96 which isn’t bad going for me πŸ™‚ Much of the guild are close to or level 100 now, which is awesome. Johan is the best geared in the guild, which is cool (though it’s only heroic level stuff so it’ll probably change when raiding starts).

I’m well enough for my computer (obviously) which I’m super happy about but touch and stuff is being really problematic. I want computer a bit more right now but if it continues for more than a few more days I’ll have to sort something out.

Got a letter from my consultant today. Mentioned I’d a previous positive ANA test (news to me) and now have probable POTS (not surprised). Also says fatigue of unknown origin, which is fair enough. I’ve been referred to Professor Julia Newton so hopefully she’ll be able to help (I know a lot of people who have asked to be referred to her so I’m feeling very lucky it has happened for me without having to ask, and that she’s not far away).

I’ve got a couple of blog drafts I want to finish, but all brain power currently going into computer gaming related stuff (or talking to very important people). I’m sure I’ll manage it at some point πŸ™‚

 Posted by at 11:47 pm
Jul 142014
 

I was not expecting as many people to see my previous blog post (either here or on Tumblr) as actually did. I now have about three times the followers on Tumblr as I did before it, which is kinda scary.

I’m working on communicating better with my main care worker. Some things are a bit better for it, others I still need to figure out. I’m not sure if I’ll be showing her the post or not (I want Johan’s opinion but he’s too meowy to give it at the moment). The main issue will be there though even if it gets better with one person.

How bad I communicate became even more obvious when I had a new care worker this week. She’s nice, but there’s something about her that makes me not want her to be near me and Johan not want her to be in the flat. Since she’s meant to be providing my personal care, that’s a problem. I’m going to have to ask the agency if they can send someone else instead (my main care worker now has Sunday’s off, which I’ve been telling her to get back for months now). If I can’t ask myself my main care worker has said she’ll speak to them for me. It would be easier if I knew exactly why I’m having trouble with her, but I don’t. She’s just not a good fit.

Penguins imprinted on leg

Penguins imprinted on leg

Yesterday I had penguins imprinted on my legs from my knee high penguin socks. I also had a really sore band where one of them had been digging in. I never used to have this problem with socks but I do now. Having penguins on my legs is cool but I don’t think it does them much good (and they’re itchy and a bit sore). I think I might need to look into some socks that are less tight, though as my legs are rather skinny (from disuse mostly) I don’t know how easy that’ll be. Ones without seams will at least prevent it digging in there.

I’ve been getting a bit frustrated by being stuck in bed. I’ve still not got back to where I was before I was in the care home, and I’m having to be careful about sitting up (though I do try to sit up at least once a day, in an attempt to convince my body that it’s not a bad thing). My nausea levels have been pretty bad and the cyclizine has been messing up my sleeping patterns. This doesn’t help with trying to plan my days, or even working out if there’s a better time for the care calls.

I finally got around to putting my medication in my pill box (one with separate boxes for each day of the week, and five slots in each for meds- four for regular medication and one for as needed). We’ve discovered that most days I don’t take all my medication because I’m not awake enough- I’ve set it so I take domperidone (to be taken before food three times a day) with the first three lots of tramadol, but some days I only have two. I also ended up basically skipping Friday because of an extra long sleep on Thursday. The good thing is it did let us know in good time that I needed more medication so Johan was able to order them before I ran out completely (due to the doctors being closed when he tried to order them the first time I would have run out Sunday evening if I’d taken every dose of tramadol, but by that point I had at least four extra doses so it was fine and he’ll pick them up today).

One thing I think I forgot to mention in the update post is I’ve finally been approved for the hoist! I’ll be getting a ceiling track hoist in both the bedroom and the living room, as well as a tilt in space shower chair. The hoist will be at least August before installation, and Johan has quite a bit of work to do in the living room beforehand, but he’ll get there. I am really excited by it as it would mean I could get out of bed even if I’m not well enough to transfer independently, which would be really good for me.

I’ve been playing a bit of Hearthstone, a bit of Minecraft, a bit of Long Live the Queen, and some games on my tablet like Ninja Chicken Multiplayer Race and Pocket Legends. No idea what I’m doing on the tablet games but they’re a good distraction. Also managed to read the second Young Wizards book today when it became obvious sleep wasn’t happening, and I liked it even better than the first. I want to read the third now but I have to be careful not to try and read too much at once as it’s so easy to overdo it (and one book every few daysΒ is enough for me right now).

I watched the World Cup final, supporting Germany (I’m quarter German). They deserved their win, but I got really worried by the amount of head injuries during the entire tournament. There were a lot of times where I thought they really shouldn’t have continued playing, as some of the players looked more out of it than I normally do (which is saying a lot). It was fun to watch though, and nice to support a team. Johan has been having fun watching it, and I’m trying to convince him to support Liverpool in the premier league (they’re my team because I’m a Scouser :P).

Had a few problems with people trying to break into my blog last night. It didn’t help that for some reason the security plugin had stopped working properly and wasn’t blocking those who were trying to brute force. Johan was clever though and managed to fix it. I found out about it because I was getting the emails for each attempt- I think there were over 25,000 by the end of it, including the 5,000 that Johan just deleted from the mail queue. It wasn’t fun but sorted now. I’m so glad Johan is able to do server stuff as my brain isn’t good enough to do more than the very basics now (I accidentally dropped a table instead of deleting a row in one in mysql a few days ago- I really need to install phpmyadmin so I don’t mix my commands up again!).

I should probably sleep soon as I’ve been awake since last night. I’m hoping everyone is as okay as they can be, and I’m just glad I’m well enough to do some stuff, even if I’d like to do more πŸ™‚

 Posted by at 2:19 pm
Jun 062014
 

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.

 Posted by at 9:50 pm
May 022014
 

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

 Posted by at 9:54 pm
Mar 252014
 

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™‚

 Posted by at 3:22 am
Nov 232013
 

Been trying to write a proper blog post for ages. Brain not working enough. Decided on a list instead to get things down.

  • Blizzcon happened. Was amazing. Still not watched everything I wanted to (kept falling asleep) but I’m very excited for Warlords of Draenor and Hearthstone. Heroes of the Storm sounds good too.
  • Have been playing Minecraft recently. Currently working on automating all my machines and breeding bees. Advice from friend who has done bee breeding is don’t. There is a lot to it so he might have a point πŸ˜›
  • Sometimes playing World of Warcraft, especially flexi runs with my guild. Brain brokened = terrible healer. Still fun though πŸ™‚ My UI is buggy and I’m not well enough to sort it out.
  • Wanted to write something for the This is Autism flash blog. Wasn’t well enough. Instead read lots of blog posts and they were good. Linky -> Β http://thisisautismflashblog.blogspot.co.uk/
  • Health is not so great. Seems this time of year is not good for me. Told CFS team I was improving then a week later started deteriorating again. Having sleep paralysis and other scary symptoms again.
  • Neighbours are main cause of deteriorating health. They are being really noisy again. We have told the council and there are anti social behaviour cases against both upstairs and across from us (upstairs are worse but across has been bad as well). I haven’t have a full night’s sleep since across from us returned from who-knows-where.
  • Our key safe was stolen. Coincidentally, it was stolen after the upstairs neighbours were watching my carer use it. Because of that our flat and both communal doors have had to have the locks changed. That is a big hassle we could have done without. It also means we’re back to Johan opening the door for the carers, and he’s missing out on stuff he wants to do.
  • For now, my care and equipment stuff is on hold. My GP wants me to see the consultant again before having the case conference about it. I don’t think my GP realises how ill I am, as she keeps wanting me to go for hospital appointments and I’m not really well enough. I was discharged from the consultant as I was too ill to go see him, when I was doing a lot better than I am now. Constantly being asked about it is not helping.
  • I’m becoming less able to do certain stuff. Emails are impossible (I’ve been trying to write one for the past two months, and it’s urgent) as it communicating the information to someone else to write it for me. Speech is getting harder. Doing a food shop online is nearly impossible, and Johan is struggling as well. I am getting a bit concerned about it.
  • Had first McDonalds in over a year. Would be on a day where my digestive system was in full rebellion so I couldn’t enjoy it. It was the day Johan felt up to getting it though so I didn’t want to miss the opportunity.
  • I think I’m losing weight again. Can’t be certain but my clothes/pyjamas are feeling looser and Johan’s noticed my fingers are looking thinner. I really need to keep my weight up but eating is hard πŸ™
  • I have Christmas to sort out, especially Sammie’s Christmas and birthday presents. Her main Christmas present is ordered but I need to get everything else. I have some ideas but need to check they’ll work, which means writing that email…
  • I want to swap some of my distraction spoons (that I use for watching telly, gaming and reading) for doing stuff spoons (for use on food shops, emails and other stuff). Unfortunately when I’m not distracting myself then the pain and blehness and feeling horrendous gets worse, and that’s what is interfering with the getting things done.
  • I have not been on social networks or up to chatting much recently. See blehness and stuff.
  • I have finally caught up with the last season of Doctor Who and am looking forward to the 50th anniversary episode. Not sure if I’ll be able to watch it as it’s broadcast though I’ll try πŸ™‚
  • My Virgin Media TiVo box now has Netflix. This makes it easier to watch stuff on there without needing to turn my computer on first. Only UK stuff but there’s some awesome kid’s stuff I can watch when not well πŸ™‚
  • I have penguins. Penguins are awesome.

I’m sure I’ve missed tons of stuff, but at least this way I’ve got something down.

 Posted by at 3:35 am