Feb 122018
 

Danni is lying in bed wearing a purple penguin hat and sticking their tongue out.

I think I’m going to change the day for these posts to Monday, so I get the full week’s data. Picture is of me the morning of my PIP tribunal. I’m still happy we won, just annoyed I had to go as we gave enough evidence for them to make the correct decision in the first place. I now have payback from that so feel rather rotten, but it was expected and we prepared so it’s not as bad as it could be. Tomorrow I’m meant to be getting my flu jab (better late than never) which I’m not looking forward to but since flu is what triggered my ME I know how important it is. I’m wanting to watch the Olympics as soon as I’m well enough. I’m probably missing out lots of things but brain is very muddy.

  • Overall mood – Good (though Tuesday and Wednesday were awesome)
  • Average daily sleep – 6 hours 31 minutes (of 10 hours 8 minutes)
  • Longest sleep – 14 hours 52 minutes on Thursday (of 19 hours 21 minutes – the crash at the start of payback)
  • Clothes changed – 1 (added socks, shoes and pyjama bottoms to go to tribunal, then took them all off and changed into my nerdy penguin top when I got back into bed.)
  • Wipe wash – 0 (I really need one when over this payback)
  • Water wash – 0
  • Hair wash – 0
  • Books read – 1 – The Island
  • TV watched – 0
  • YouTube videos watched – 0
  • Music listened to – 0
  • Blog posts written – 2
  • Penguins cuddled – nearly enough 🐧🐧🐧
  • Johan hand holds – some (hands hurt for a couple of days after pushing wheelchair)
  • Johan hugs – 1 (is easier while I’m in my wheelchair)
  • Time on Twitter – 13 hours 56 minutes (average 1 hour 59 minutes a day)
  • Time on Reddit – 25 hours 20 minutes (average 3 hours 37 minutes a day)
  • Time on Facebook – 23 minutes (average 3 minutes a day)
  • Other –
    • We won my PIP tribunal!
    • Snow is awesome but not good for wheelchairs
    • Payback isn’t fun but easier to deal with when expected
    • I really don’t cope well with unexpected change during payback. Panicked over different carers twice, even when Johan was here. If I’d been told it would have been okay.
    • I need to change the theme on this blog as this one no longer works properly. I need to be on the Surface or my computer for that though.
    • Penguins are awesome. 🐧🐧🐧🐧🐧

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 73
  • Godville Heroine Level – 48 (94% done)
  • Godville wood for ark – 6.4%
  • Godville savings – 336 thousand
  • Cross stitch completed – 1
  • Most played game – Animal Crossing: Pocket Camp ( 12 hours 14 minutes, average 1 hour 44 minutes a day)
  • Other –
    • Finished catching all the bats needed a day before the end of the event in Animal Crossing. It was much easier than the last one.
    • Now there’s no event I’m only playing a couple of times a day.
    • Currently working on getting blue tulips and levelling animals.
    • Now have 8 animals at level 20.
    • I’ve been levelling up the Hip amenities. Now on the first tier 3 amenity, after which I can go back to the others I need to level.
    • Chose pixel pictures as my next set in Cross Stitch. The one I’m working on now makes me think some of the images may not be original work…
 Posted by at 7:37 pm
Feb 062018
 

TL;DR: Got enhanced daily living, enhanced mobility PIP until December 2020. We won.

Today was not the nicest day for travel, being cold and snowing. Hot water bottle and hand warmer were much needed, along with winter weather stuff. Got there 15 minutes early, which is good going for us, especially as Johan had to push me (the hardest bit being unavoidable no matter how we travelled). When we arrived they were reviewing the evidence, which Johan had read and I kinda knew the existence of (being too ill to read most of it myself). Got called in not long after.

The tribunal itself went fine. They asked that I answered the questions if possible, but Johan could take over if needed and was given time to add to my answers. They were only concentrating on a couple of descriptors as we provided so much evidence. Some questioning about my DLA history as that wasn’t provided by the DWP (and Johan didn’t know it all as some was before he knew me). Mostly questions on mobility and using my shower chair/washing. I was struggling near the end but they asked Johan to add anything he wanted and then we were asked to leave while they discussed it (though I told Johan I was boaty and then had to describe what that meant for the record – dizzy and like everything is moving). The tribunal panel were nice and understanding, which probably helped me be able to contribute so much.

During the wait I had my eye mask on while Johan was going on about how it was the hardest bit. Not long after we were called in and told the decision. Being told that they only changed the points in a few of the descriptors because they stopped at 12 was pretty awesome. I’m now on enhanced daily living and enhanced mobility, going from standard daily living and no mobility, so it’s a big change. My reassessment date is December 2020, which is fair enough as my condition has changed quite a bit in the last few years (mostly for the worse, but I’m optimistic that’ll it be better soon).

Getting home was interesting. The snow was heavier and was sticking more, which is not ideal for wheelchairs. The hardest part was the ramp going from the street up to the ramp to the front door – it’s hard on a good day because it’s so steep, and with no grip it’s horrendous. I ended up helping to push to get through the worst of it, as without the wheels were just slipping and we were making no progress. I was scared we’d have to contact someone to help (no idea who), but between us we made it until Johan could manage by himself again.

Once home, back in bed and mostly sorted, Johan read the tribunal report to me. A couple of the changed descriptors still aren’t entirely accurate, but I got enough points so don’t care. I’ll need to eat and calm down before I can rest as I’m running on adrenaline, but I’m very happy.

I know I’m going to pay for today soon (especially the wheelchair pushing) but it was definitely worth it. It would have been much harder for me mentally to not be there, so worth any payback I get. Hopefully it’ll stop the nightmares that I’ll get it all taken away at least for a bit.

We fought the DWP and we won.

 Posted by at 1:17 pm
Jan 282018
 

Danni is lying in bed with a massive smile on their face. On their shoulder there is Poseidon, a baby emperor penguin.

This week has been pretty good overall. I’ve been on a huge high from going in the living room last week. Thursday was Johan’s 29th birthday, and though I’ve not managed to sort his presents out properly yet I think he had a good day. On Friday we got a takeaway to celebrate and I had a yorkshire pudding wrap with pulled pork in the middle. It was very nommy.

The only downside is I tried to do a food shop on Tuesday and I got so overwhelmed my brain broke. For a few days afterwards I couldn’t really make decisions without a lot of help, and felt really out of it and foggy. I think I’m getting over it now. I keep forgetting that cognitive stuff can be just as exhausting and blehness making as physical stuff. It didn’t stop me being happy but it did make me need a lot more rest and help than I otherwise might have done. I think next time it might be better for Johan to do it (as that happened despite having a shopping list – not being able to find out what we already have in makes it a lot harder, but even trying to work out what was better value was too hard).

On Monday I read Fahrenheit 451. I’m not sure I really understood it but it was good. I’d like to read it again at some point when my brain works a bit better. Since then I’ve been reading stuff on the SCP Foundation website (and on the SCP subreddit). It doesn’t matter that I can’t understand a lot of it, but it was good for when by brain was broken (even if I did keep reading the same ones over and over again because I forgot I’d already read it until I got near the end).

Sammie got hit by the Malwarebytes update problemΒ yesterday. Unfortunately I was half asleep when trying to help her (I woke up to roll over and have a drink and noticed the chat) so didn’t get her to check the task manager which would have revealed this. I guess resetting Windows 10 isn’t the worst thing in the world. Luckily she was able to backup everything she wanted to keep, and she was glad to hear this morning that it wasn’t her fault.

I bought a new electric throw/blanket as the one I wanted was finally available on Amazon. I have one I got a few years ago but the material felt horrible and even putting a duvet cover on it didn’t help much. This one is fleecy and though it’s an ugly brown it works and is small and light enough for me to use by myself. I just need to figure out how to stop knocking the buttons on the controller in my sleep as they’re very sensitive. I also got new penguin towels which are cute. I’m hoping they don’t go missing as much as the other towels we have.

  • Overall mood – Awesome
  • Average daily sleep – 7 hours 56 minutes (of 9 hours 48 minutes)
  • Longest sleep – 10 hours from Tuesday afternoon to Wednesday morning (of 13 hours 47 minutes)
  • Clothes changed – 1 (Zen penguins guide to hoppiness, due to accident as was too ill really)
  • Wipe wash – 0 (only had underarms done when changing top – too ill for anything else)
  • Water wash – 0
  • Hair wash – 1, with shampoo cap.
  • Books read – 1 (Fahrenheit 451Β by Ray Bradbury)
  • TV watched – 0
  • YouTube videos watched – 2 – Corgi in an elevator and Newsthump card game.
  • Music listened to – Steven Universe songs, Moonlight Shadow.
  • Blog posts written (including this) – 1
  • Penguins cuddled – plenty 🐧🐧🐧
  • Johan hand holds – tons
  • Johan hugs – 1 on his birthday πŸ™‚
  • Time on Twitter – 3 hours 56 minutes (average 34 minutes a day)
  • Time on Reddit – 25 hours 54 minutes (average 3 hours 48 minutes a day)
  • Time on Facebook – 51 minutes (average 7 minutes a day)
  • Other –
    • Johan is now 29!
    • Johan ran to Scotland this morning. It was 10 kilometres from Carlisle to Gretna Green.
    • We only needed 1 extra care call for Johan going to Scotland. Knowing the care agency will respond in an emergency makes a massive difference.
    • Electric blanket is awesome! It doesn’t completely replace heaty penguins and hot water bottle, but it does mean I don’t need them heating as often.

Game stuff

  • Games played – 5
    • Animal Crossing: Pocket Camp
    • Cross Stitch
    • Neko Atsume
    • Godville
    • DragonVale
  • AC: Pocket Camp Level – 67
  • Godville Heroine Level – 48 (5% done)
  • Godville wood for ark – 4.1%
  • Godville savings – 220 thousand
  • Cross stitch completed – 3
  • Most played game – Animal Crossing: Pocket Camp (16 hours 6 minutes, average 2 hours 21 minutes a day)
  • Other –
    • Managed to finish the second half of the butterfly event in Animal Crossing: Pocket Camp with about an hour left to go. I was incredibly lucky and had some very generous friends in game.
    • Much preferring the Winter Sports Event. I got one of everything within two days, including getting the Snow Park amenity to level 2. I’ve just finished building my eighth mini skate rink and any extra snowflakes from now on will go on more tiaras.
    • DragonVale released an update with extra levels an islands to get. Break postponed until I get them all.
 Posted by at 8:08 pm
Jan 022018
 

I hope everyone had a good Christmas/holiday period, and that this year is better than the last.

I’m still not doing amazingly. Caught another cold before I’d recovered from the last one, so haven’t got out of bed since the Great North Run in September. Despite this, I had a lovely Christmas, and was thoroughly spoilt.

Johan bought me this amazing purple glittery crystal thing, that is sparkly. I’m hoping to find somewhere to put it that has a light shining on it so I can see it properly. He also got me some sheets which is very practical when bed bound πŸ˜›

Sammie came over on Christmas Eve, which was the best present from her, especially the hug. She also brought me gifts, a wall sticker of some penguins swimming through a port hole, and this huge penguin cushion that’s also a hand warmer. She got Johan (now also called Dad2) a t-shirt saying “I am currently unsupervised. I know, it scares me too, but the possibilities are endless!”. Both of us were extremely happy. Sammie’s grandparents gave me a chocolate penguin and chocolate smashable igloo, and Johan some running socks. That was awesome of them 😊

My mum gave us a pod coffee machine. As Johan has now started drinking coffee, this is very much appreciated. If also does hot chocolate so I’ll be able to use it too. Other gifts included a hot chocolate mix and some star decorations from friends (and I think there were others I can’t recall right now). I’m grateful for all of them, and along with the many cards I received feel very loved.

Christmas day I spent time video chatting Sammie, which is always good. Johan made Christmas dinner, which was roast duck, his amazing roast potatoes (even better this year!) and the trimmings. I managed to stay awake to eat it, and also watched the Doctor Who Christmas special with Johan. Loved the episode, and it makes me want to catch up with the last series (I’d only got up to the 2016 Christmas special before). I may not have been able to get out of bed, but it was awesome.

Boxing day the payback from the last few days hit, so I spent most of the day asleep or resting. I did manage to message Sammie to wish her a happy birthday (she’s 14 now, which is kinda scary) and I think she liked the presents we got her. That’s pretty much how I spent the rest of the week, though on the Saturday Johan went to South Shields to run his 50th Parkrun, which also took him to 1000 miles ran in 2017. An awesome achievement, which I slept through so he went for breakfast and cake with his running friends.

New Years Eve I woke up in the evening, and just before midnight put the telly on to watch the London fireworks and spoke to Sammie through messenger. The fireworks were awesome to watch, even though I’m torn on whether it’s a good thing or not. Once they finished the telly went back off as it was a bit much for me, but I’m glad I got to see the pretties and virtually celebrate with Sammie.

Payback is hard to deal with, as it makes all my normal symptoms much worse and adds in new ones which isn’t great, especially when I’m already in relapse from the successive colds. It’s a lot easier to deal with though when it’s due to doing something nice. I know that with rest and patience it will pass, and hopefully I’ll be able to get out of bed and do stuff again.

Since my last blog post I bought a new Android tablet, as my old Galaxy Tab S was freezing, randomly rebooting and generally being less reliable. It had lasted 3 years including many drops and falls, so I’m happy with that. I replaced it with a Google Pixel C, which is much faster. I also bought a chunky case for it immediately, to protect it from the inevitable drops and to make it much easier to hold.

As my new tablet went on sale the day I bought it, I used some of the money I saved to buy a Google Home Mini. Within a couple of hours of playing with it, Johan wanted one so we now have two. I already had wifi plug sockets that I could control, then on Black Friday the Philips Hue starter set I’ve been eying up for years was reduced to its lowest ever price, so I grabbed that. I have one bulb in my bedroom (currently in the lamp clipped on the back of my bed) and Johan put the other two in the living room and his room. Though it doesn’t always understand what we’re saying, being able to control the lights with our voices (including my text to speech if I’m nonverbal) is amazing, and I’ve set up custom phrases to set my light to purple, make my light change colours and such. It’s also good for reminders and simple searches when I’m not wanting to leave the app I’m using on my tablet.

Our Christmas tree from last year ended up being broken, so it’s been replaced with a black fibre optic one. Johan is very happy that he didn’t need to set up lights, and I’m happy because they’re twinkling slowly enough to not make me worse and aren’t too bright. We plugged it into one of the the WiFi plugs so I can turn them on and off by myself (including using the Home Mini) and this year it was fully decorated for an entire 10 minutes! Then the penguin on the top fell off. For next year we’ll either need to get a better penguin topper or a way to secure the penguin on there, but even without it’s very pretty.

Below is my game stuff which I know is more boring πŸ˜›

I still miss World of Warcraft, but I’ve only been able to go on my computer a couple of times in the last couple of months, and on the surface not much more than that. I’m hoping once I get out of my relapse I’ll be able to resubscribe and play again.

For now I’m sticking with my tablet games. The main one I’m playing right now is Animal Crossing Pocket Camp. It’s perfect for me, as I couldn’t use the controls to play the full version on the DS, and it’s simplified so it works even when I’m very foggy. At the moment I’m level 56 (of 64), have invited all the animals to my camp, have 2 of 5 top tier amenities (which let me level up the corresponding animals to 20), and have one of every is of flower in the garden. There’s still plenty for me to do, but I can spend only a few minutes or an hour depending on how I’m feeling at the time.

I’m still playing Neko Atsume, Godville and DragonVale. Neko Atsume I’m only missing the memento from Hermyown. In Godville my heroine has just completed my temple and is now saving for retirement and collecting wood to build an ark. In DragonVale I have one of every dragon, two of all but the most recent event dragons, and am working on rift traits for the dragons that can have them.

I occasionally play Gardenscapes and Fishdom when I fancy a match 3 game. I’m also occasionally playing sudoku, but I’m much slower and it’s very frustrating now my brain is so foggy. Puzzle games are normally my favourite but I need to be able to think to complete them.

I tried colouring apps but was getting anxious as I couldn’t decide what colour to use. Then I discovered cross stitch apps and they work much better for me. They work like colour by number, so I just follow the code and it tells me if I make a mistake. Once I’ve put the right colour in it won’t overwrite it with a wrong one, which is great as my hands can be quite shaky, and I can zoom in really far if needed so the boxes are big and easy to hit. I’m really happy to have found something I can do that’s relatively low energy and helps when I’m anxious. It helps that I can add my own pictures as the one I’m currently using doesn’t have any penguins by default. Penguins make everything better.

 Posted by at 12:50 pm
Nov 072017
 

The short version: I’m not doing very well. The long version:

  • Care home didn’t improve much. We put in an official complaint before I left and heard nothing. When we’ve got the energy, we’ll have to complain to social services and possibly the CQC. Coming home was horrible as I wasn’t well enough to travel, but I survived and was glad to be home.
  • On the 10th of September I managed to get out to watch the Great North Run! The care worker who took me discovered just how hilly where I live actually is. I saw Johan (for a few seconds – he is fast!) and lots of Running Ninjas and it was awesome! I probably shouldn’t have gone out but it was worth it.
  • Just as I was starting to get over the payback from going out for the Great North Run, I caught a cold. Unfortunately I’ve not recovered from it and in some ways I’m getting worse.
  • I’m no longer well enough to go on my desktop computer. Because of this, I’ve not renewed my WoW subscription. Since I’d had it active for at least 9 years, it feels weird not being able to even log into the mobile app. It’s hard to justify though when I was lucky to manage a couple of hours a month of game time. I’ll resubscribe when I’m well enough to play again.
  • I’m very grateful for the Surface right now. It’s easier for me to use than my desktop computer, especially as it has a touchscreen. I also don’t have to stay in a certain position to use it like I do my desktop. I can’t use it as my main tablet but I’m using it now to type this and it lets me video chat to Sammie on the rare occasions I’m able to use it while she’s online.
  • Sleep is still an issue. Mostly hypersomnia, but occasionally insomnia due to anxiety. Even when awake I’m spending most of my time feeling incredibly dopey and out of it. Today I’ve cheated and am drinking caffeinated drinks to be productive, but I have to be careful as it can cause really bad payback.
  • I’ve not been out of bed at all since the Great North Run. Even moving for pad changes and stuff is very painful and exhausting. I’ve also not been able to have a proper wash so I’m a bit smelly (though I’ve had wipe downs a few times and change my top every week or two). I’m hoping to have a bed bath soon, though a shower seems far away right now.
  • After lots of letters back and forth confirming stuff, we now know where the PIP tribunal will be (the local law courts as I’m only mostly bedbound, not completely and it’s pushing distance) but we’re still waiting on a date. I’m hoping they’ll let Johan speak on my behalf as my ability to think drastically decreases when I’m sat up (even when my chair is fully tilted and reclined).
  • We have new upstairs neighbours. One of them is a toddler who sounds adorable! Our main “issue” is dragging furniture being loud which compared to what we’ve previously had is barely anything. Baba cries sometimes but other than wanting to help them it’s not a problem (though my boobs do occasionally hurt like they used to- I’ve not breastfed for over 13 years so no idea what that’s about).
  • Not able to do any loom knitting as my hands won’t let me, but I’ve got lots of light up stuff and glow sticks that I’m enjoying. Some have been presents from awesome friends, including colour changing penguin lights from Vivacia Dreams which are amazing.
  • I’m sad I had to spend Halloween and Bonfire night in bed, but I did have Halloween snacks and wore my penguin mask which scared the evening care workers. I slept through Bonfire night so missed all the noise.
  • Worked out that I can put a fleece top on myself if I have it cut open through the back, like a backwards cardigan. It feels better than wearing a cardi or hoodie backwards as I was before. Got two so one can be in the wash. I did look for back opening tops but they’re both expensive and very institutional/old ladyish.
  • Also bought an electric hot water bottle. Too heavy and difficult for me to manage myself, but it stays warmer than the penguins and will be useful for when I go out again (especially as plug sockets are easier to find than microwaves). It’s so hot I had to buy a cover for it.
  • Finally saw the GP. Trying prochlorperazine again (as cyclizine is causing tachycardia), and have been prescribed peppermint capsules to hopefully help with digestive issues. They’re also going to ask Professor Newton about maybe having meds to help with the POTS, and we told them about the tribunal and me not being female and stuff. I’ve also asked to be checked for any nutritional deficiencies as my eating still isn’t amazing and we never checked they were gone after the last lot of supplements ran out. I hate blood tests but if this relapse is being caused or made worse by something treatable then it’s better to know and fix it.
  • Johan is still running. He completed an official marathon last Sunday, which he’s very happy about. He’s also pretty fast, coming 5th out of over 40 runners. He’s also still working on Vostok Inc. as volunteer QA and enjoying it.
  • We’re working on getting more organised and starting today the cleaner is coming for 2 hours instead of 1 each week. I also have my storage unit built which is helping as I now have places to put things.
  • Penguins continue to be awesome.
  • WTB Greater Heal pls
 Posted by at 5:33 pm
Jul 302017
 

An incomplete and out of order summary of what’s been going on the last few months.

  • I had a shower! It was awesome. It still takes way too much out of me to be able to have one regularly.
  • I went out to vote in the General Election. I like our Labour MP so I voted for him. He retained his seat (as expected as this is a very safe Labour seat).
  • I had a birthday. Turned 31. Spoke to Sammie online and played with a light up balloon. Sammie made me an awesome animation and picture πŸ™‚ Johan got me a skirt and a penguin book. I had lots of cards and also cake a few days later. I also had other presents which were much appreciated.
  • I spent a lot of time resting. More than I’d normally do.
  • Asked the district nurse to come out. Changed Derma S to Cavilon (Derma S was causing an itchy rash, which is what it’s meant to treat) and also asked about a different mattress as pain kept waking me up and I needed to roll over, which is difficult and exhausting. Got an alternating air mattress the next day. It makes a massive difference and now I can sleep for up to two hours before waking, compared to 45-60 minutes beforehand. I also don’t need to roll over as much.
  • The reason for the resting – I went to see Sammie’s school play. Until I got the new mattress I wasn’t sure I’d be able to make it, but sleeping better and all the rest paid off and I managed to see it. Sammie had no idea I was there (she knew Johan was going) and her reaction when she saw me afterwards made it all worth it. The play itself was excellent and I got to meet a couple of her teachers. It was the first school event I’ve been able to attend so it was very special.
  • Got a taxi to and from the school. Same driver both times (he stayed on shift late to bring me home). The journey went as well as it could, but when getting out near home my wheelchair went sideways off the ramp. Luckily the driver had a really good hold on my chair and it went down slowly enough that all I got was a slightly grazed hand. Johan and the driver picked me back up and I was fine. I’m not so sure about the driver though. He refused to let us pay even though it was an accident.
  • Johan has gone to Sweden again. I’m in the same care home as last year. Johan pushed me this time rather than getting the bus as I wasn’t really well enough to travel (and the movement of the bus would have been too much) but has told me he’s not pushing me back. I got pretty much straight into bed and haven’t left it. I go home next Thursday.
  • Unfortunately being in the care home hasn’t gone as well as last year. As I can’t use a buzzer (they make a horrendous noise and can make me nonverbal) I’m meant to be checked on hourly. This hasn’t always happened so I’ve ended up with a soaking bed multiple times. The worst was Tuesday night where no-one came in from about 10.30pm (when I got my medication) until after 3am when I asked someone on Twitter to phone for me. I also ended up having a meltdown on Monday as I got overwhelmed by everything. Some of the staff are really good though. I’m going to make a complaint when Johan gets back and see how they respond before deciding whether to ask to change care homes for respite.
  • I’m really struggling with asking for things I need. Being in a care home makes this worse. I wish I could do everything myself.
  • I bought a Go Pro during the Amazon Prime Day sale. Johan is planning to use it for his runs. I’ve also insisted he goes to Edinburgh Zoo on the way home from Sweden and film the penguins for me.
  • I also bought a wifi plug socket for my bedroom in the sale. Being able to control my lights Β using my tablet is so awesome I ended up getting a second one (they only let you buy one in the sale for some reason). It also means Johan can control my lights if needed.
  • I’m now struggling to manage Twitter as well as Facebook, and am struggling with games I normally find easy. I think it might be because of being in the care home. Hopefully it’ll get better once I’m home.
  • I’ve had a couple of visits while here. One brought a crochet penguin his wife made for me. They’ve really helped me cope πŸ™‚
  • I’m hoping I’ll eventually be able to write blog posts that aren’t just bullet point brain dumps. I like writing them but my brain is being silly.
  • Penguins are still awesome. The penguin cam stopped working for a bit but Johan is at the zoo on Monday so I’m hoping to see them then.
 Posted by at 12:26 am
Apr 102017
 

Bullet Point update cos easier:

  • I got my PIP award. Standard care, no mobility. I apparently only need aids and adaptations (not carers), as I can type on my tablet. I have no communication difficulties despite being non-verbal during the assessment. I can somehow walk more than 50 metres (but less than 200) despite not being able to sit upright or stand, due to being able to lift my legs from the bed once while lying down. We asked for a reconsideration, they said it was right. We’re going to go to tribunal but I’m not sure when that’ll be. I’m not surprised, and I’m glad I get enough that Johan still can get carers allowance in the meantime (as getting nothing would have messed everything up due to the way our finances work), but it’s a bit ridiculous really. The report was full of lies, and they’ve still not told me how I’m meant to walk without standing as I really want to know so I can get out of bed by myself!
  • New care agency has been sorted, and started. It’s so much better than the old one. It’s weird having two carer workers on an evening, but unless it’s a task requiring two people (basically hoisting) normally one does stuff in another room while the other does my personal care. Other than asking for one particular care worker not to come unless it’s an emergency (she’s not bad, just not really suited to me), I’ve been getting on with everyone fine, and I have a pair who are probably my favourites that I see several times a week. I also get rotas which makes things much easier, and the lunchtime call means Johan worries about me less when at his day service. It’s already saved him having to come home at least once πŸ˜›
  • We got the new day bed! Only problem is it’s a bit low down so need to find the elephant feet for it (I have some in the flat somewhere, just not sure where). I’ve been in the living room a few times, but not as frequently as I’d like for various reasons.
  • We had a power cut. I managed to report it online (I have backup internet through my phone for these occasions). My normal bed wasn’t flat but the hoists are battery powered and the new day bed is, so Johan took me into the living room when we were told it was going to be a few hours to fix it. I ended up spending the night in there.
  • Power cut told us our burglar alarm (which we don’t know how to use) is broken. When the power came back on it kept going off and it wouldn’t accept the code (the only bit of information we have about the alarm). Housing repair person came out and fixed it, then said we need to ask for a new battery. Due to the lack of people turning up to fit a new battery, I think Johan has forgotten to ask for it.
  • I survived the noise due to new earphones I bought. They’re Bose QC20s and the noise cancelling is amazing. For most noises it’s better even than the earplug/ear defender combo, and I can put ear defenders on top. Definitely not cheap at all, but considering how noise sensitive I am, definitely worth the price.
  • I’ve been out once so far this year, at the end of February.Β I tried to find a suitable hat, failed, but did find a visor. Bought that instead, then had dinner with Johan. Was nice, though noisy. Hoping to repeat it at some point.
  • No showers yet. Felt up to it a couple of times, but Johan wasn’t available. I’m really hoping it’ll be soon.
  • Two hair washes so far. One at the beginning of February, one last week. Had to explain to new care worker that I don’t need anti dandruff shampoo, the dry skin is just because I don’t get it washed or brushed very often.
  • Upstairs neighbours are no longer there. The circumstances were very much not good, but I’m grateful that I don’t have to listen to the arguing, music and noise anymore. They seem to be clearing the flat out today.
  • Brain is still refusing to work properly. Making silly mistakes when trying to do online shopping, and needing Johan to help me with online forms. It’s very frustrating as I used to be good at that stuff.
  • My body is still evil. I sleep a lot. I need a lot of cyclizine. Nothing much has changed there.

Games stuff separate as only I’m interested:

  • When I can get on puter, I’m playing WoW still. Loving the patch 7.2 stuff, though annoyed I miss invasions, buildings being up and stuff. Finally ran my first heroic this morning, and only only one other person died (I missed a mechanic that one shot me due to not having done the dungeon before). Maybe I’ll get those quests I’ve had for months done at some point.
  • I’ve stopped playing a lot of my mobile games as wasn’t enjoying them as much. Picked up a few replacements. Mostly playing 1010!, Fishdom, Godville, I Love Hue and Neko Atsume. Godville is the best as it’s a zero player game so I don’t need to do anything if I don’t want to (though I can do stuff to try and influence my heroine if I want). Also playing Word Cookies but Johan is so much better than me, and it overheats my tablet so it turns off.
  • I played a bit of Stardew Valley on puter, but put it on hold again until I’m caught up a bit with WoW stuff. It’s fun but I had to use a mod to make fishing much easier as it was impossible before.
  • I miss playing any first person games. I really hope they stop making me dizzy soon.
 Posted by at 10:00 am
Jan 182017
 

I’ve decided not to set new year’s resolutions, as my health means that I’ll struggle to keep them and it might not be my fault. What I’ve decided to do instead is make a list of goals for the year, and hopefully achieve some πŸ™‚

  • Have a shower at least once every 2 months. That would be 6 showers this year. Last year I managed 2 in 5 months (how long I had my shower chair) so will require me to work on being well enough. I’ll continue having bed baths in between and hopefully might get a bath when I go into respite (baths are amazing but our wet room isn’t big enough for one).
  • Use the toilet/commode. Around the time I became doubly incontinent, I also had to stop using the normal commode I had as I kept fainting while using it and Johan got fed up of picking me up off the floor. My current shower chair doubles as a commode and tilts, so hopefully that won’t be a problem this time. Getting me on it at the right time is going to be the big challenge, as I don’t get much notice. Even better if I can manage to use an actual toilet, but that’s possibly too optimistic.
  • Go out with Sammie somewhere. I managed this last year and would love to do it again. Preferably somewhere a bit more interesting and less wet. As I’m restricted in how far I can travel, and can’t predict how my health is going to be in advance (though resting for a week beforehand helps it doesn’t guarantee I’ll be able to get out of bed) it’ll require a lot of thought. I’m determined to do it though if Sammie wants to.
  • Create and keep to a rough daily routine. This will have to be adaptable (what I can do when in payback is very different to what I can manage on my best days) but we should have the care agency issues sorted soon (have direct payments ready to go once we’ve found an agency that can take me on) and it’ll help reduce my anxiety a lot if I know at least some of what I’m going to be doing each day. It won’t have set times (my sleep is far too erratic for that) but more guides for what to do soon after waking/once my brain switches on/after meals and such.
  • Read at least 20 books. I bought a Kindle Voyage yesterday as my Paperwhite has been missing for months and I promised myself I’d get it if I read 50 books in 2015, which I managed. The number might be lower than the last two years but that’s so I’m more inclined to read longer books. I’m not buying new books until I’ve read some of the ones I’ve already paid for unless they are personally recommended to me, but since I have nearly 1000 unread books available on my Kindle (mostly free, but a decent chunk paid) I don’t think I’ll be short of reading material for a bit. If I’m doing well with this I will increase it later in the year.
  • Sort out my clothes. They’re a mess. My drawers are full and I have piles of clothes otherwise. Many had been buried for a long time in the cupboard and were only rediscovered when Johan got the old dryer out of there. I’m going to sort through them and reduce them to what I need now (so anything uncomfortable goes) so I know what I have and what I don’t. I’m also hoping to photograph what I’m keeping so I’ll be able to pick clothes easier as I can’t remember what I have.
  • Sort out our letters. I used to have a great system for organising letters, involving an in-tray (for new ones), an expandable folder for important ones, and a box for older ones. Then I got ill, we moved to our new flat, and Johan is not organised at all. I’m hoping to implement a system I can remind Johan about so once I’ve sorted it it doesn’t get bad again.
  • Spend more time in the living room. My ultimate goal is to go in there every day I’m not in payback, and spend at least some time on the daybed. I’ve worked out the daybed we currently own isn’t suitable (I want to use an overbed table with it and there’s no gap underneath) so I’m probably going to give that one away and buy a more suitable one. The fun bit will be getting it built, but once that’s done I’ll only need to be well enough to go through there.
  • Sort out computer stuff. There is a list of computer stuff I want to sort out. Most of it is small jobs that only take short amount of time each, but together it’s quite a big job. Included in that is updating the blogroll on here πŸ™‚
  • Go out with Johan somewhere that isn’t shopping or for a meal. Now I have my hoist and on good days can go out, I want to go somewhere with Johan. Up to now most of my trips have been shopping or meals, but I’d like to expand on that. At the moment my best times are evenings/night (I’m typing this in the middle of the night) which does complicate things, but sometimes I’m able to go out in an afternoon and I want to take advantage of that. Ultimately I’d like to manage being on a bus or taxi long enough to travel further, but until then Johan is able to push me into Gateshead and I can cope with short Metro journeys so I’m not completely stuck.
  • Create a guide to looking after me. A friend has given me a copy of their version, and I already adapted some of it for a personal information sheet that was useful when I went into hospital. I previously failed at creating a health book but with an example it’ll be much easier. I also found a leaflet on how to use my toothbrush which will also help with that.

That’s plenty of things to be getting on with. Some are bigger than others, but I can work on them slowly throughout the year. Much of my payback at the moment is due to panicking about care agency problems (I don’t know who is coming on a weekend so by the time they arrive I’m too anxious to be touched, so even if they’re nice I can’t have anything done) and the times aren’t right so getting that sorted will be a big help. Johan is doing most of that though, I’m just reminding him of what needs doing. We’re in contact with one potential agency at the moment and will be looking into others if they can’t do it, so hopefully it won’t be too long until that’s sorted. I’m also hoping to get someone to help me organise stuff and do little jobs like put proper curtains up and similar.

I’m getting over the dental surgery last week. My right side (wisdom tooth removal) is now pain free, and the left hand side (back molar removed) it’s just the jaw that’s painful if I accidentally lean on it (while sleeping) or forget and try and chew on that side. Ibuprofen is keeping the pain under control though so I doubt it’s anything serious. I’m still needing a lot of sleep and rest, but have managed several hours on my computer this evening and if I keep going at this rate, I might be able to get into my wheelchair at the weekend πŸ™‚

 Posted by at 11:05 pm
Jan 112017
 

Yesterday I went into hospital to have my teeth sorted under a general anaesthetic. Considering I have severe ME, it went about as well as it could have.

The ambulance with the stretcher was late, but we were expecting that and I was second on the list because we knew I’d not be getting in for 8am (I probably would have been first otherwise). The journey was horrible but I listened to music to help cope with the noise (along with wearing my earplugs and ear defenders) and used Google maps to see how long it would be. Got there and was put in a side room which was good.

Not too much later we went through what was going to happen, consent and stuff. Johan filled in the forms and signed for me (I gave verbal consent for him to do everything) and they took my blood pressure and heart rate. Blood pressure was normal (higher than my normal but I was anxious) but my heart rate was bouncing around, but only between 99 and 120ish bpm so not too bad for me. When I say my heart is doing funky dances, that’s part of what I mean. Once I told them that was normal for me they accepted it.

I’d made up a personal information sheet that was two sides of A4, that we laminated as we could only find A3 lamination sheets and I was also making a communication board so put them in the same sheet πŸ˜› I based it off a friend’s version and I think it really helped them understand me. It explained my normal difficulties, medication, what to do if certain things happened (if I go nonverbal, if I have a panic attack, etc.) and what not to do, especially sitting me up (which is normal procedure). It’s generic enough that it’ll be useful as a normal emergency sheet, and will just need updating if anything changes.

After that stuff we had a little wait, then got told off for my chocolate consumption (I think keeping my weight up is more important, and the acid reflux is probably more damaging in the long run). Johan struggled to get compression socks on me (I ended up doing one and hurt my hands, he managed the second after being shown how) and I had a gown put over my pyjamas and it was off to theatre. I took Po with me as I knew having a penguin there when I woke up would help. I also wore my sunglasses as it was really bright.

In theatre it was the usual confirmation of who I was, and then I was asked if the signature on the consent forms was mine. When I said no the guy jumped backwards and some of the other staff laughed. Then he confirmed that it was Johan’s signature and that we both knew what was happening, the risks and stuff. Next everyone but the anaesthetists left and one of them started looking for a vein in my hand. Because I had already hurt my hands earlier, the tapping on the back of my hand was absolute agony. I think it hurt more than the canulla being inserted and that’s bad enough. Fluids and meds were given, then they gave me some oxygen, then they told me they were putting me to sleep and injected a stinging liquid. Not too much later I was asleep.

Waking up I was very groggy. I remember feeling Po under my hand which helped with my anxiety, then being very shivery and then had warmed blankets put on me. That felt really nice as I became aware of it. Johan came in, and I asked for my eye mask because it was too bright with just my sunglasses. He was talking to me but I can’t really remember anything of it. They removed two teeth and filled 4 more, mostly at the back. I’m down to two wisdom teeth now.

Got wheeled back to the side room (the movement was horrendous) and the light was turned off which helped. Was still very fuzzy and I think I drifted off to sleep a few times. Was asked about pain, said my face was okay (it hurt but not too much) but my body was really bad. Was told I could have my normal tramadol and a drink and that helped. After a bit more time I was able to swap to my sunglasses and talk to Johan a bit. Asked about my teeth pain again and it was okay, so they called for the ambulance and they turned up.

The journey home was not exactly fun. They kept the main lights off in the back of the ambulance, and I listened to music with my ear plugs and defenders on. I also watched the map so I could tell how long it would be before we got home, which helped as I don’t like not knowing what is going on. When it said 1 minute from home I started feeling really nauseous, but was able to cope knowing it wouldn’t be long.

Ambulance guys got me back into my room, and Johan hoisted me back into bed (the hoist sling had stayed under me the entire time, which isn’t too bad if I’m not sitting on it). One of the ambulance guys asked us to let them know when I next need them so they can take the day off (the path and ramp from the road to our flat is very steep- everyone who has to push me up it complains) then they left. Johan gave me some more water and some jelly which helped me be a bit less hungry and thirsty, then some cyclizine a little later as the nausea wasn’t improving.

I spent the rest of the day on my tablet as so long as I didn’t move, I didn’t feel too bad. The worst pain was in the hand the canulla had been in, which I took as a good sign. It also seems my contact allergy to adhesives has improved, as the sticker around the canulla was fine (unlike last time where it was a horrible itchy rash). The ECG pads were still a bit red and itchy but not too bad.

I woke up a few times during the night, and my main problem was thirst as I was too tired to call Johan and as I’m not allowed to suck I didn’t have my hydrant (or can be used without sucking but we were worried I’d forget if tired, and I really want to avoid dry socket if possible). I was able to ask Johan eventually for some water (plus electrolyte tablet as the salts are good). He gave me my meds and once they kicked in my pain levels were back to Danni normal, which is still really bad pain but bearable.

Ended up sleeping again for a bit, then woke up as the carer came in and got annoyed that she put the washing machine on as it was too noisy. (To be fair to her, if the doors are closed it usually doesn’t disturb me too much, and she hadn’t been told not to put it on). Put my ear defenders and sunglasses on (my eye mask has ear muffs but they don’t block as much noise as my ear defenders) and that helped. I didn’t feel up to having any personal care done and wasn’t allowed to have my teeth brushed yet, so just said a few words and I’ll see her this evening.

We had our new dryer delivered this morning, after the guy who came out to do the repair due to the big fire risk thing said it would still be a fire risk after. As I wasn’t feeling too bad once I’d woken up a bit and stuff I told Johan he could test it, and though it’s pretty noisy for the first couple of minutes it then goes really quiet (to the point where the wind was disturbing me more). As I can put ear plugs in and ear defenders on we’ll be able to use it so long as I’m not in payback or relapse. It has a wetness sensor and seems to work faster than our old one, so I’m looking forward to soft warm towels and pyjamas again.

Other than a bit more tired I’m not too bad right now. Have been eating jelly, soup and milkybar desserts, and finally tried out my new cup which is designed for use lying down, has two handles and needs less tilting. I can manage it myself if I’m passed it so I’m really happy with it. Once I’m over the worst of this recovery I think I’ll be using it for hot drinks as I don’t really like using a straw for them. Until then it’ll be sugar free juice with electrolyte tablets.

I read that tomorrow will be the worst day as that’s when the swelling kicks in, and is also when my payback tends to start. I’m hoping it’s not too bad, but need to ask Johan to get some ice packs in the freezer in preparation. I’m also getting rather tired now so might nap again.

 Posted by at 4:06 pm
Jan 062017
 

Happy New Year!

I hope everyone had a good winter holiday season, and that this year will be good to you. I had a lovely time just before Christmas and on Christmas Day, but overdid it a bit and so it’s taken me a couple of weeks to recover. Annoying but nothing I’m not used to.

It’s been a busy time the last month or so. I managed to go out again a few days after my last post, going to Nando’s and then Tesco (couldn’t really go into Newcastle as the Metro was off), and lots of WoW for a bit. I did most of my Christmas shopping on Black Friday and then got payback from that so rested lots.

Tuesday 6th December I managed to go to Enchanted Parks with Sammie (and Johan and Sammie’s grandparents). The event itself wasn’t very good this year (based on Shakespeare, but there was less to do and see than last year and it was hard enough for the adults to understand) but being able to go out with Sammie made it worth it, even though it was chucking it down with rain. It was the first time I’d been able to do that in years, but next time maybe I’ll find somewhere a bit better (and less wet).

The next morning was attempt number 1 at going to the hospital for the dental surgery pre-assessment. We got there, and they couldn’t see me because I was on a stretcher (the previous week Johan spent a long time on the phone trying to tell them I was going to be coming on a stretcher, but kept getting passed around until finally arriving at a dead end). Attempt number 2 was meant to be the day after, but just before I was due to be picked up the lift on the ambulance broke (it’s kinda needed to get the stretcher in and out.

Friday morning was my PIP assessment. I was having payback from going out that week, and was non-verbal. The assessor tried to say she couldn’t assess someone who can’t speak (it’s a benefit for those who are long term disabled. And I have an appointee.) but she spoke to her supervisor and I dunno what they said but it was able to happen. Johan answered the majority of the questions for me, and I typed when I had something to add. By the end of it it was obvious to Johan I was struggling (kept hitting the wrong buttons on my text to speech app so it was saying things randomly) but I’m not sure if the assessor picked up on it. At least she seemed to understand that trying to get me to sit up was a bad idea, and I think she might have got an idea of how much help I needed by the end of it? The decision hasn’t been made yet so I just need to wait.

A week later the council came and cut down my tree πŸ™ I am still sad about that, as the last few years I’ve been watching the birds out my window and seeing how the leaves change, and now I won’t be able to do that. On the 15th we had attempt number 3 at pre-assessment appointment, and though it was meant to be around 11.30am and ended up being nearer 2pm (they were in surgery longer than expected) it ended up being successful. I’m getting my teeth sorted under a general anaesthetic on the 10th of January, and I warned them about the things that I needed them to know (don’t sit me up, don’t give me paracetamol, being non-verbal isn’t anything to worry about).

Sammie came over to get her Christmas and birthday presents on the 22nd, which made me very happy. I love speaking to her. It feels weird being the mother of a 13 year old now. I also spoke to her on Christmas Day for a few hours via video chat and she showed me some of her presents. I am slightly jealous of her VR headset πŸ˜› Our neighbour insisted on making us Christmas dinner (even though Johan tried to tell her he was cooking for us) so we ended up having one from her on Christmas day. It was nommy, even after reheating (I was asleep when it was made). Johan made ours on Boxing day (Sammie’s birthday) and that was also nommy reheated. Johan wins on potatoes though πŸ˜› I wasn’t well enough to talk to Sammie that day but I did email her and she liked the email πŸ™‚

For Christmas I got several penguins and penguin items (yay penguins!), a couple of new looms for loom knitting, chocolates, a handmade photo frame (from Sammie, with a photo of us two from when she was a toddler) and some smaller items. I also got so many cards that my 20 card holder wasn’t big enough so we had to find other places to put them. With that and two Christmas dinners I was very spoilt. I managed to watch the CBeebies version of the Nutcracker (which I really enjoyed even though I’m not the target audience), then the Christmas church service on telly. It was a good day even if I did end up sleeping a lot of it.

After Christmas I crashed a bit. I spent a lot of time sleeping, and when I was awake I was feeling rather rotten and out of it. New Year’s Eve Johan gave me a wash, and we had a cuddle while watching the fireworks as 2017 came in. I paid for that afterwards but it was worth it. Today is the first day I’ve been feeling well enough to do anything productive, though even this morning I was non-verbal. On Sunday our dryer will finally be made safe to use again after about a year (it was one of the ones affected by the fault that can cause lint to end up inside it and go on fire. We don’t want a fire). With having a general anaesthetic on Tuesday we’re expecting that I’ll need a lot of rest so are planning to keep things quiet for a bit afterwards. I’m hoping the payback won’t be too bad and that I don’t end up relapsing. We’ll see though.

TL/DR: I saw Sammie (twice!), there was Christmas and I spent most the time asleep or poorly πŸ˜›

 Posted by at 10:54 pm