Week 4 Review

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 problem 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 451 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 🙂
  • 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.

Happy New Year!

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 😛

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 😛

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.

November? How did we get here?

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

How Is It April Already?

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 😛
  • 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. 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.

Brain broked but stuff happened

Physically I have got better. Cognitively I have got worse. This is not unexpected but very annoying. I am struggling to understand even simple things like my bank account and emails.

Because of this, Johan is now my Appointee when it comes to the DWP. This means he’s responsible for contacting them, filling in forms, and my money now goes into his account (which he then sends to mine because the bills come out of it, but when we’re able he’s going to be added to my account so he can manage it as well). We were worried that they’d say I didn’t need an appointee but instead they asked why it had taken so long. It was very hard for me to admit that I needed that help, and as soon as I’m consistently well enough to manage it Johan is going to hand control back to me.

Johan had his PIP renewal. We were a bit scared as it was only a 6 page “has anything changed” form and then we didn’t hear anything for weeks, but it’s been renewed again at the same rates so we don’t need to worry for now. My DLA to PIP transfer is in progress- we’ve now got the form that Johan needs to fill in. He says it’ll be easier than filling in his own, and he even managed the phone call to initiate it okay. We’re going for our usual tactic of sending tons of supporting evidence (mostly my care plans, where it says they’ll find me in bed both calls) and hope it goes smoothly.

As I’ve been doing better physically I have been out of bed a bit. I’ve been in the living room and to Newcastle (I went to the yarn shop! I bought yarn!). I saw Snow Dogs and they are awesome. I also went to the local park for the fireworks display and it was good, though people kept climbing over me while we were in the queue for food (we think they didn’t realise how long the chair was so thought there was a gap when there wasn’t). I wore my penguin onesie and was nice and warm. I’m definitely glad I managed to go, and hope to go next year. We’re planning on putting lights on my chair and skipping the food queues though 🙂

I have a shower chair now so I’ve had two showers! Showers take a lot out of me and the chair isn’t quite supportive or padded enough but person from CFS team has suggested using towels to make it better and we’re going to try that. I am so glad that it’s here now though. The main thing stopping me using it is not being awake and well enough at the same time Johan is available to shower me.

Last week we finally got my new hoist slings with head support. I’ve tried them and they make it so much easier and mean my head no longer flops backwards and my neck doesn’t get sore! We’re not sure if one will fit in my normal going out changing bag, but if not I’ll just get a bigger one.

I saw mental health team. They can’t help me because I’m not at high enough risk. Blegh. I’m both glad that I’m not that ill mentally, and frustrated that they couldn’t help even with suggestions. Last night fireworks going off made me really out of it, but I was also able to describe what was going on to Johan (he was with me at the time). I think it’s the first time I’ve been able to do that, explain what’s going on in my brain while it’s happening, but I don’t know how to stop it and I was exhausted afterwards and slept all night then all day. That was not in the plan.

I went to the local hospital for a smear test and coil change. Was funny the first time I went as they didn’t know I’d be in a stretcher, most of the information they had was wrong, and they didn’t know where to put me. They figured it out though (they had a second waiting room that had a curtained off bit- they put me there with a guard nurse at the door) and the doctor took my smear. I went back a few weeks later for the smear to be repeated as the first one didn’t have enough cells, and this time the doctor changed my coil as well as he didn’t want me having to go back there again. The second time they had two rooms ready for me- one in case I could stay on the stretcher like the first time, and since I couldn’t (the ambulance guys needed it for other people) they kicked a doctor out of his office so I could go on the only bed in the department that lies flat. It wasn’t exactly fun, but the coil change went about as well as it could have and I was in less pain than the day before, so I appreciate that. My second smear came back normal so I don’t need to worry for 3 years now, and 5 years for the coil. I’ve been a bit crampy and moody since but hopefully that’ll calm down in the next few weeks.

I have a hospital appointment at the beginning of December about my dental surgery. It’s going to be at a further away hospital, which will be the furthest I’ve travelled in over 4 years. Hopefully it won’t take too much longer after that to have my broken teeth removed- one of them has had a temporary filling in for over a year.

I’ve been playing a lot of World of Warcraft since Legion came out. I’ve done all the current quest lines, got all three artifacts for my Priest, and am concentrating on levelling my Discipline one. I’m okay doing most World Quests, LFR and normal dungeons. I’m too scared to try heroic or mythic dungeons yet, though since I have a 853 item level I am geared enough. Part of the problem is that I don’t really know how to heal with the new Disc system- in LFR it doesn’t matter too much if I’m not sure what I’m doing as there are other healers, but in a dungeon I’m the only one. I’m considering learning Holy for it, but I think I need my brain to work better first. WoW is a lot of fun though, and I’m glad I’m able to spend a decent amount of time in it (mostly at night while Johan is asleep).

The biggest problem my cognitive issues is causing is I can’t initiate conversation now. I can know what I need to say and who I need to say it to, but without a prompt I just can’t do it, and I don’t know how to explain that. Replying to someone is easier but still really difficult, especially if I don’t know the person that well. I’m also muddling up or forgetting words and stuff much more these days, which if nothing else gives Johan something to laugh at (as he hears most of them). It’s so frustrating needing to do something but not actually being able to do it, even though I technically know how.

Johan is now very busy. He’s in Newcastle 3-4 times a week now, and he’s taken up running so does the 5k park runs most Saturday mornings, and goes to the gym when he can to do more running. If I’m asleep at the wrong times, I sometimes don’t see him for more than a few minutes while he sorts me out in between stuff and sleeping. Both the exercise and being out regularly is helping him a lot, and what he’s doing now might lead to a career in the future. I struggle quite a bit if I’m awake while he’s out, but it’s mostly feeling vulnerable- if something happens, I can’t do anything about it. It also means my pads leak more which isn’t fun. We’ve asked our social worker to change the call times so I’m not left alone for quite as long (the morning call moved to lunchtime so Johan can sort me out before he leaves then the carer can sort me out a few hours later) and also for the evening call to be made much later so I don’t need to cancel it whenever I’m able to go out. He’s put the request in but I don’t know how long it’ll take.

The agency finally stopped trying to send the bad carer in October. It took my social worker putting it in the contract not to send her before they’d stop. I’ve had several carers say they’d happily do those calls if asked, so it’s not that no-one wants to deal with me, but they kept insisting she was the only person available. I’ve still not heard anything about my official complaint (that I put in during July) so once everything else has calmed down we’ve got that to chase up. It’s the usual problems we’re having with the care agency now- most of the carers are lovely and do their best, but there’s a complete lack of organisation and communication, and I still don’t get rotas so get panicky every weekend as I don’t know who’s coming.

At some point I need to see my GP as my antiemetic has started causing tachycardia and palpitations, which stops me sleeping and is very uncomfortable. I can reduce my heart rate manually for a bit (by holding my breath and tensing my muscles- I discovered it myself years ago when I thought I was panicking but was actually having POTS attacks, and it turns out it’s an actual treatment) but it eventually goes back up and the palpitations stay. I’ve been on it for several years without problem so I’m really annoyed this has started now, as it was the third one I tried and I really like not vomiting. Hopefully we can fit it in around Johan being out all the time.

I’ve now written a blog post that’s too long for me to read. That’s probably a sign I should publish it. Hopefully there aren’t any massive mistakes in it.