Things Feel Weird

I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).

Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).

We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.

It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.

There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.

I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).

One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.

I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.

Self Isolation Update

So it didn’t take long after my last post for things to change. Johan’s races were cancelled, and we decided that putting me in a care home was not a good idea considering it would increase the risks to me and the other residents. Johan is also now working from home, as is everyone else in the office.

Johan still took the days booked off as holiday last week, which was Wednesday and Friday. On Wednesday we spent time together in my room, and they opened my curtain and window for me so I could get some fresh air (I originally wanted to go onto the ramp but we decided that wasn’t the best plan). Unfortunately I forgot to ask to have the curtain put up again, and the extra light in my bedroom caused me to feel horrendous over the weekend. It’s back up and I’m doing a bit better now.

Friday was originally meant to be Johan goes to Kielder day. Instead, it was Johan plays Doom Eternal day. I did get to see them occasionally, but mostly I heard lots of clicky noises from the living room 😛 At some point we want to play the board game Pandemic, as I’ve had it for ages but not opened it yet.

Johan working from home is weird. Having them in the living room all day but not being able to just bug them about little things is weird, especially as they’re usually in a voice or video chat with colleagues so I can’t just yell through. We’re using the same system as when they were in the office, which is using WhatsApp for non important stuff (like funny pictures or tweets I find) and Google Hangouts for urgent stuff (I need some care doing). If it’s super duper important, I’ll yell anyway as the rest of the team knows that Johan is my carer, but hopefully it won’t come to that. (If I can’t yell, then I can use the Google Nest Minis to broadcast a message into the living room, which is also part of my wake up Johan plan on a night time.)

At the moment we still have the care workers still coming in. On top of the normal hand washing and gloves, they’re also wearing aprons now. We’ve told the agency that if/when they start having staffing problems, just let us know and they can cut our calls as Johan is here. It will make things harder for us but a lot of the clients have no-one so they’ll need to prioritise. We’re also considering if it might be safest to cancel the calls anyway, to reduce the chance of me catching the virus from them. We’ll need to check with the council for how that will work with direct payments but we’re not there yet.

Sammie is happy that there’s no school and her exams are cancelled. She was really stressed out about her GCSEs and I was getting worried about her. If her teacher’s assessment is close to her predicted grades she’s got no problems when it comes to doing the college course she’s interested in. We don’t know if her school will be providing any work as they’ve already done the curriculum and were just revising and getting prepared for the exams, but if not then she’s got projects she wants to work on. We’re also playing Minecraft together when we get the chance, and I believe she’s got an island to develop for her animal friends.

The hardest part of being in self isolation is that I won’t get to see Sammie in person for the foreseeable future. We’ll be video chatting as normal, but it’s not the same. This is especially hard as the last time she came over I was pretty ill and we couldn’t have any hugs. I’m also no longer having hugs or hand holds with Johan, and we’re reducing physical contact to the minimum. We go on voice chat when I’m on my puter and they’re not working so we can chat without being in the same room.

Johan is still going out for prescriptions and food, but otherwise is staying in. We did manage to get some baby wipes from Aldi, and I found an unopened bottle of alcohol based hand sanitiser that has technically expired but should still be okay according to what I’ve read online, so I’m now using that.

One of the reasons we’re being so strict about physical contact with me is that the NICE guidelines for critical care with COVID-19 came out. They will be using the Clinical Frailty Scale (pdf) to help inform when critical care is appropriate, as for those with a score of five or higher “there is uncertainty regarding the likely benefit of critical care organ support”. My score is seven or severely frail . Now this doesn’t mean that if I need critical care I definitely won’t get it, but as doctors already massively underestimate my quality of life (I’ve had many that don’t believe me when I say I’m not depressed among other things) and there is likely to be a shortage of ventilators, there’s a good chance that if I get that ill, I’ll be placed on palliative care instead.

As well as trying to avoid me getting ill at all, I’ll also be updating my emergency information sheet to state I want all life saving measures to be taken if required, and make sure that those who might be asked know my wishes. I still think the main risk is less the virus itself and it making my ME worse, as I’ve ended up in hospital before when unable to swallow and it would be even harder now. Unfortunately a couple of online friends have already come down with suspected COVID-19, one of whom is still in hospital. I really hope they’ll be okay. It’s so important for people to stay at home unless necessary, but some people haven’t got that yet.

So on to better stuff. Other than the payback from sensory overload caused by not having my curtain up for a couple of days, I’ve been doing pretty well for me. Lots of computer time, catching up with emails, chatting to Sammie and Johan. I’ve also been looking at the positives that are coming out of this. Everything from the mutual aid groups, people putting rainbows in their windows for kids to spot when they’re out on walks, individuals helping out those in need, and even companies giving free drinks to those who have to work.

For this week, I’m hoping to play more World of Warcraft and Minecraft, maybe read a book, and possibly watch the Steven Universe film. I’m also planning on lots of sleep and rest to keep myself as well as possible, doing my physiotherapy, and chatting to Sammie and Johan. I’ll be on Twitter so I can see penguin and cat pictures and videos. I’m going to set up a routine based around Johan working, especially since I seem to be awake during the day most of the time at the moment. Things may be uncertain right now, but there is still good out there.

Coronavirus and Stuff

I spent most of February sleeping and feeling rubbish because of a cold (not sure if it was the same one from January or a different one). When I was awake, I mostly played Merge Dragons as it required pretty much no thinking power (and I used walk-throughs for the levels I was struggling with). I did have Sammie come over during February half term, but was too ill for hugs. Next time she’s over we’ll have to make up for it, but seeing her made me very happy 🙂

March is being better. I got my hair washed yesterday for the first time since November which is awesome. I’m able to go on my computer again and that means playing other games. First of all, I was one day away from getting enough Mechagon rep to get flying in World of Warcraft Battle for Azeroth areas. It took me about an hour but I did it! I can now fly everywhere that has flying enabled so I’m very happy.

The second was that Ellen, Bilbo‘s mum, created a Minecraft server for fans of Bilbo called Bilbcraft. Sammie and Johan had been playing a lot of it, including when I had Sammie over here during February half term, and I really wanted to play as well. Since being well enough to go on my computer, that’s been the main game I’ve been playing. I have a penguin main base, and a little island getaway which is great for exploring an area most people haven’t been to. I’m building up the courage to go to the nether and the end soon, as I want to build ender chests to make moving my stuff around easier. I’m not always well enough to interact with the other players, but they’re really friendly 🙂

The biggest news we have is that Johan now has a paid job! They started just over a week ago, and as it’s the game company they previously volunteered for we know the boss is very understanding of our situation (and me needing Johan to come home with pretty much no notice at times). The hours are relatively flexible as well so we can work around my appointments and such. It does mean claiming Universal Credit instead of ESA. So far we’ve had the ID check and made Johan my appointee again (luckily no arguments there) so Johan can do everything needed for me. I might need to go through another work capability assessment, but hopefully it’ll be fine.

We also got a refund on our Bedroom Tax a few weeks ago. Johan sent an email to the council telling them we didn’t think we should be paying it because I need a separate bedroom for medical reasons, and after a few months we got a letter back saying they agreed and refunded us back to when the law was clarified in 2017. The timing was great as we got it just before Johan got their job so we’re using that to pay the bills until payday and Universal Credit is sorted out. Johan was also able to go down to London to see friends which was awesome.

So Coronavirus is the big news story at the moment. It’s not widespread in the UK at the moment, but it’s probable that will change at some point soon. People have been stockpiling items like hand sanitiser, toilet roll and baby wipes. I’m unable to wash my hands due to having no access to a sink, so rely on hand sanitiser to keep them clean. I do have half a bottle left, but it’s not alcohol based and from what I could Google is only partially effective against viruses. Johan has been trying to get me an alcohol based bottle, but they’ve been sold out everywhere. I also need baby wipes and am really hoping we can get some before running out.

I’m not particularly worried about getting it myself. Being mostly bed bound means I have limited contact with other people, and the carers wear gloves for all personal care tasks. This would be fine, except next week Johan is going to Kielder and that means I’m going into a care home. I don’t usually have much contact with the other residents as I tend to stay in bed there as well, but it’s a lot easier for a virus to spread there than at home.

If I were to get it, I’m not at high risk of having a severe case of coronavirus itself, as my lungs are pretty much the only part of me that seem to work correctly. The problem is even a mild cold causes my ME to become much worse, and if it were to be particularly severe then I could end up at the point of not being able to chew again which is not great. I do have an N95 mask if needs be, and gloves, but avoidance is currently the best plan.

Johan is asthmatic, so I’m more worried about them getting it. Swine flu made them very ill, and I made my ME much worse trying to care for them at that point (I could still crawl back then). We do have the care agency, but we’re not sure how quarantine would work for them. If it were me to get it then Johan would probably be able to take time off work if working from home isn’t an option (I dunno how realistic it is), but if Johan got really ill I might need to go into a care home again, while being isolated, and I have no idea how that would work. I’m also slightly concerned about the care home being put in quarantine while I’m in there, but since it’s next Wednesday and only for a week hopefully it will be fine. Needing pretty much 24 hour care complicates things a lot.

The people I’m most worried about are my friends who are immunocompromised or whose ME is much more severe than mine. Already some have been told by their doctors to avoid going out outside or socialising, and I know myself how horrible being isolated is, and it’s somehow even worse if you’re well enough to do things but can’t because of external factors. I really hope they stay safe and that the people around them help them avoid getting it.

In the meantime, I hope that Johan recovers from the knee injury that they got at the weekend so they can actually run at Dark Skies Kielder in just over a week, we can get hold of some baby wipes and hopefully some more hand sanitiser, as well as more food as the shop we did had half the order missing. I’m also wanting a bath while at the care home, as baths are awesome and I don’t have a proper one here. And while I’m well enough I’m going on my puter to farm sheep and fight old Gods as often as I can 🙂

Stuff that Helps – Communication Aids

I’ve decided to update and expand on my perfecting bed life blog post I wrote a few years ago. Some things have changed since then, some haven’t, but I still spend >99% of time in bed, not even leaving it to go to the toilet. Over time, I’ve found some things that help me, and maybe some of them will help others who are bed bound for whatever reason.

I’m splitting this into multiple blog posts as there’s a lot to it. I’m making no promises on when any parts will be added, as my health is too unpredictable. Pictures may be added in the future when I’m more able to take them (or ask someone else to take them for me).

All links are to Amazon Smile or Google store to show examples. Some items may no longer be available, and there are probably newer versions that are better. It’s taken me 19 months to write this, but hopefully it’ll help someone.

Communication Aids

One of the hardest parts of being stuck in bed is loneliness. I’m lucky enough to live with my spouse, but I can go months at a time without seeing anyone but him and my care workers, which can be quite hard (this is not because I have no friends willing to visit, but because visits are very draining and often I’m just not well enough). Luckily, some awesome people invented the Internet and gadgets that use it, so I can still talk to people (and write this blog). These are those I use the most.

Android Tablet

Danni's Android Tablet

If I’m not asleep or resting, I’m almost certainly on my tablet. I’ve been through a few of them, but for my particular needs, my tablet is probably the item I rely on the most. It takes the place of a smartphone for me, as with my coordination problems and vision issues, the larger screen makes it much easier to use.

My main use is for communication. I use WhatsApp or Discord to talk to Johan and Sammie, Twitter and Facebook for talking to friends, and as a text to speech device when I’m nonverbal. I also read emails and text messages (forwarded from my phone), and very occasionally even send them or reply.

My other main use is as an entertainment device, whether that be playing games, reading library ebooks, blogs or Reddit, or watching YouTube videos. I also use it to send videos or streams to my telly and podcasts and music to my Google Nest Mini.

I also use my tablet to set reminders, organise things like my calendar, shop on Amazon, track where Johan is via GPS (when he’s running and with his permission), find stuff out and sometimes just look at pretty or cute pictures. I really hate being separated from my tablet, even for short periods.

You can buy a tablet in lots of places. I have a Google Pixel C as I multitask a lot, need a 10 inch screen, am heavily invested in Android, need to be able to root it, and as it was being discontinued it was a good price. (Since writing this I almost destroyed the charging port on my original Pixel C, but couldn’t find a newer tablet I liked so found a reconditioned model on eBay and gave Johan my original one as he could still charge it.)

If you’re using one as heavily as I do then I’d recommend getting a decent one, especially if it’s a communication device as well, but for just Facebook, Netflix and YouTube a low cost one such as a Kindle Fire HD 10 is probably okay. If you’re not heavily invested in Android then an iPad may be a better option as they tend to just work better and even the cheaper ones are decent. Some people might prefer a smaller screen size, in which case 7, 8 and 9 inch tablets are available.

I have a chunky pink case to protect it from drops and use a purple beanbag tablet holder so I don’t need to hold it up when using it (which also converts into a neck cushion which is nice).

Laptop

I’m cheating a bit here as what I have isn’t really a laptop but is actually a large Windows tablet (Microsoft Surface Pro 4) but with the keyboard cover that’s how I use it. I was initially hoping it would replace my Android tablet but it’s just that little bit too big and doesn’t have a large swipeable on screen keyboard so that didn’t work out.

My Android tablet is brilliant, but there are some things that are just much easier on a device designed for proper multitasking, and is running a desktop operating system. My main uses for my laptop are writing blog posts (as it’s easier than on my tablet), shopping anywhere that isn’t Amazon, especially food shops (as I have it set up to automatically input my address and card details so it doesn’t matter if I can’t remember them), video chatting with Sammie, and fixing my tablet when I’ve broken it for the fourth time that week (as I keep messing with it rather than it being unreliable). I also take it with me into care homes when I have respite and I often use it instead of my desktop computer as it’s less overwhelming. The touchscreen is really useful and I forget I don’t have it on my desktop.

I bought the Surface Pro 4 and Typepad (keyboard cover) on Amazon, but you can get the newer versions (and many other types of laptop) in many places. For most people the Surface is overkill and they can get a much cheaper laptop instead, though they may also be heavier. If everything you need it for is browser based, then a Chromebook could be the best option (especially as the newer ones also run Android apps).

A note specifically about using a Surface with the Typepad as a laptop: unlike a proper laptop, the Surface won’t stay open if it’s leaning forward, if you’ve got it resting on your legs with your knees up in bed. My solution was to buy a case with a stand that I thread through the clips on the Trabasack I use in bed, which works but the specific case is quite expensive (on top of the cost of the Surface and Typepad). It was worth it for me (especially as Johan often uses it when I’m not), but unless you need a lightweight, powerful touchscreen Windows device, I’d suggest getting a proper laptop or 2 in 1.

Desktop Computer

I use this for the same stuff I use my laptop for, but also computer gaming (mostly World of Warcraft these days). I have it set up over my bed, with a dual monitor mount screwed onto my overbed table (not the most stable method but it works), and I have my keyboard on my lap (usually on a Trabasack) and my mouse to my side. It’s been built specifically for gaming (by Johan), so it’s overkill for most people, but when I’m well enough to use it it distracts me from how ill I am better than most other things. As I have two monitors, I can be video chatting Sammie while playing WoW on the other screen, which is awesome. I do need help getting on and off it, and I’m not well enough to go on it as much as I like, but it’s the one hobby from before I got ME that I can still enjoy.

Smartphone

I use my phone a lot less than most people, as my tablet takes over the role. Its main purpose is to be a 4G hotspot if my broadband dies or I’m in the care home (or the rare times I actually go outside), but I also use it for text messages and buzzing Johan’s phone, via an app on my tablet. I also use it for taking photos as the camera is better, and quickly looking stuff up when I’m doing other stuff. Some people find a phone easier to use than a tablet because it’s smaller and can be operated with just your thumb if needed.

My current smartphone is a Samsung Galaxy S9+ Johan gave me after deciding he wanted a new iPhone, but there are lots available and what is most suitable depends on your needs and budget. I put a cheap case on, and a strap that makes it much easier to hold and means it doesn’t go flying when my hand or arm spasms.

Google Nest Mini

I mostly use my Google Nest Mini for home automation so will go into more detail in another post, but it can also be used as an intercom if you’ve got another one in your home (as well as my room, we have one in the living room, one in the kitchen, and an older Google Home Mini in Johan’s room – we got free Nest Minis which was cool). You can also make phone calls directly and send text messages using IFTTT.

Before I had the Nest Minis, I used to use a baby monitor to call Johan through when I needed him, as sometimes I’m too weak to press a button and it worked with the text to speech app on my tablet. If I didn’t have that issue, then a call alarm or doorbell works well (call alarm is more expensive but some have separate buttons for needing something and an emergency, or you can set up a system using a doorbell like one press for needs, three presses for emergency). Amazon’s Echo Dots are also an alternative, and there are more expensive versions with screens and better speakers.

There are privacy concerns when it comes to smart speakers as they send what you’re saying to their servers. For the Google Home devices, you can turn on the start and end sounds under accessibility so you always know when it’s recording you. I also find this helpful to know if I’m speaking loud enough for it to hear. I also go through my activity every so often and delete anything too private (your activity can also be deleted automatically after 3 or 18 months).

Communication Board

Low tech, but useful if you can’t speak and can’t use a tablet or phone for text to speech for whatever reason. Mine we made with a qwerty keyboard on one side and things I need most on the other, printed onto paper and then laminated. If I can see, I can point to what I need on there. If I can’t, then someone can read the options out to me and I can select what I need via whatever method I can (nodding, thumbs up, blinking, heavy breathing). I take it with me to hospital appointments and to the care home, just in case.

Communication Cards

Low tech again, but good for giving information quickly without needing to speak. You can buy some ready made, or make your own using paper or card (and a laminator to make them stronger and slightly waterproof). I have some from Stickman Communications and they’re useful.

Health Information Sheet/Booklet

To be honest, this is useful for most people, but especially people who have complicated or rare health problems. Mine is two sides of A4 with the most important information on it, such as personal information, allergies, conditions and essential dos and don’ts. It’s been incredibly useful. I have mine laminated so it’s harder to lose and a bit more durable, but you could just have a copy folded up in your wallet just in case of emergencies. A booklet has the same kinds of things, but can go into a bit more depth if whoever has time to read it or needs to know more (I’m still working on mine). In some areas the NHS has Health Passports that serve the same purpose.

Care Information Book

If you receive care, this makes things much easier. It’s like a care plan, but one that actually works. Mine has my important information, my routine for lunch, afternoon and evening calls, instructions on how to do tasks like brush my teeth or make my drinks, and simple explanations of how things affect me. The care workers who’ve read it have said it’s really useful and they wish everyone had one. Mine took 4 years to do due to cognitive problems (and issues with care agencies that meant I couldn’t get into a routine). I have an adapted version I use for when I go into a care home for respite, with more emphasis on how to make things easier for me, as I can’t follow my normal routine.

Care Call System

This I have but isn’t massively useful for me, but we already had one installed when we moved in and the connected fire alarm does make me feel safer. These go by various names and often are provided by the council for a small weekly fee. They involve a box that connects to a call centre (usually via a phone line, though ours is separate from our main one), then a button on a pendant that you can push if you need help.

The first problem we have with mine is that when I’m really ill (and so most likely to need help) I’m also too weak to push the button. The second problem is that the noise the system makes when connecting makes me go non verbal, which means in an emergency I can’t communicate through it (and if I can use my tablet, I can text 999 if I need to).

It is connected to the smoke alarm, which means if there’s a fire and I’m home alone they will contact the fire brigade for me (and they know I’m bed bound and can go non verbal). The downside is the smoke alarm is super sensitive, so it goes off if someone cooks with the kitchen door open or has a steamy shower. When that happens whoever caused it can tell them that everything is okay, but the noise of the smoke alarm and the care call system combined make me non verbal and really ill.

For those who can press buttons, live alone or don’t go non verbal due to loud noises (or live somewhere they can turn the noise off) it’s a really good system. I keep paying for it (through my rent) because if there is a fire or someone breaks in while I’m able to push the button but I’m alone, they can get me help (their response depends on what you need, but can include sending the police or contacting a relative).

These are often available via the council or social services, but it’s also possible to get one privately. They have different names such as lifeline or telecare, and have different options and sensors depending on your needs.

Day 29 – Shopping

Payback wasn’t that bad. One day. Seems this improving thing is good 🙂 Hopefully this means I’ll be fine going to the cinema in just over a week.

I spent most of the day trying to sort out Christmas and birthday shopping for Sammie. I was mostly successful, and have now bought the bulk of her physical presents. I still have a couple to sort out, but I’m glad that is mostly done.

In between, I was moaning to/with the care workers about the new phone system they’re starting to use. I have major concerns with it, as I was told it was just a login system (fine), but it contains all my care plans, key safe code, personal information, and the care workers are having to record what they do in far too much detail.

I’m not on any kind of fluid monitoring as I don’t need it, but they have to say exactly how much of which drink they make me, how much I drink, and how much they’re disposing of. The previous paper system just involved them writing “filled drinks bottles”. I have as needed medication, and instead of just a tick box to say I don’t need it at a call, they have to type it out on a tiny screen. It’s like that for everything on my care plan, and it takes about 10 minutes for the care worker who is good with phones to fill it in, which when my calls are 30 or 45 minutes is a large chunk of time.

I don’t know where the data is stored, how secure it is, who has access, or why they’re wanting to know such personal stuff that isn’t needed for them to do their jobs properly. I previously didn’t even have the care workers log in here as I trusted them to turn up and didn’t mind them running late. The paper logs were picked up every month and that was fine, and if I’d forgotten something I’d just ask Johan to go check what they’d written.

They’re meant to replace the communication books, yet at least at the moment there’s no way for care workers to share information with each other. So if a care worker from my lunch call needs to pass a message on to my afternoon care worker (such as me being asleep so I’ll need food at the next call) then there’s no way to pass that on. Now I’m mostly able to communicate so we’d probably be able to muddle through (though I forget things I need all the time unless they prompt me), but many clients have dementia or other conditions which would make that impossible.

The worst thing about it is I wasn’t told about it (beyond it being a login system) and only found out how much personal data they were recording when I asked a care worker why it was taking so long. I definitely don’t constent to them recording my life in such detail. I keep a daily diary of what I do and even I don’t track my exact food and drink intake, because I don’t need to.

I really need to send an email to the agency to ask a lot of questions, request a copy of all the data they have stored about me, and tell them I do not consent to my data being used in this way. It’s nearly 5am though so maybe right now isn’t the time to do it. The care workers aren’t particularly happy either for various reasons, and not even the login system is working properly (and the QR code for them to scan is almost the full A4 size sheet of paper, so getting that to scan on the crappy cheap Android phones they’ve been given is really difficult to begin with). It’s a mess and a terrible idea.

When Johan got home I went on my desktop computer as I was feeling well enough and I was struggling to buy some of the items I wanted on my tablet. Chatted to Sammie for a bit, and managed the bulk of the shopping.

During my evening call I had a mini wash and changed into a clean nightie, and let one of the care workers (T) feed me soup as my stomach is still misbehaving and my hands are too shaky for a spoon at the moment. I hate being fed but she’s one of my favourites and I trust her.

I was planning on maybe going into World of Warcraft after doing the shopping, but instead I ended up sorting my Habitica stuff out, including working on my quest spreadsheet. I can now easily see how many quests I’ve yet to do and whether I already own the scrolls to them. It took a ridiculous amount of time for me to figure it out the correct formulas as my brain just wasn’t cooperating properly, but I was also hyperfocused on it and couldn’t stop until it was done. Still feel okay, just a bit tired now, so it’ll probably be fine.

Johan is out running Saturday morning and then has a party in the evening, so I’m not going to see much of him tomorrow. At this rate though I’ll probably be asleep so it’s fine. I’m looking forward to Advent starting on Sunday and I’m hoping to get the Christmas tree up early this year as I didn’t have it at all last year. I might have to ask the care workers to help me decorate my room, but it should be awesome.

My stomach is still not great, but I’ve not brought up any of my soup for about an hour so it’s improving. Tomorrow if it’s not hurting too much I might try one normal meal and see how it goes. I’ve got some lovely apples but when my tummy is like this it’s almost the worst thing for me to eat. Other than that and my usual stuff though I’m still really happy from going out on Tuesday and speaking to Sammie, so things are good 🙂