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 Izzy 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 Izzy is via GPS (when she’s running and with her 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 Izzy my original one as she 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).


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 Izzy 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 Izzy), 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.


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 Izzy’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+ Izzy gave me after deciding she 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 Izzy’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 Izzy through when I needed her, 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 🙂

Day 28 – Zonk

Ahh, payback. I wish I didn’t experience you. I spent most of the day asleep, or wanting to be asleep but not because of tummy pain. Still on a high from going out though.

While awake I managed to grab Sammie’s main Christmas present on sale. I was able to get her the better version for less than the usual price of the standard one so that was good. Had to ask her what size to get so she knows what it is, but based on her reaction I think she’s going to like it.

I also got Johan a new high visibility running vest as the one he’s been using was “one size” which meant designed for tall, large men, which he is not. The main complaints in the reviews of the one I got were said large men saying it was too small, but those of a similar size to us both said it fit well. Since he runs a lot at night I feel much better him wearing one, and maybe he’ll argue less if it actually fits. Not exactly a Christmas present, but I’m glad I got him it.

The district nurse turned up and seemed very annoyed she couldn’t get in. The reason she couldn’t get in is that she never told us she was coming so Johan wasn’t home. It’s for a repeat blood test so I’d need him here anyway (it took well over an hour last time before it was safe for me to be left) and they have his phone number so it’s an easy thing to fix.

My tablet is mostly set up now. Still to do is connect the Hue apps to the box (requires someone to press the button on it, which I can’t reach) and fix a couple of automations in Tasker. As I’ve got all my accessibility stuff running on it now it’s a lot slower than Johan’s, but it works for me and he has his own now so he can use that instead of mine 😛

When I asked him what to blog about, he suggested I blog about how proud I am of him, which I am. But he’s not ready for me to share the reason yet, so I guess that’s all you’ll find out at this point. I can say it’s something positive.

I’m nearly done with the month of blogging, and being flexible with when I’m posting has made it a lot easier. I’ve got a couple of draft blog posts I’m wanting to post that I’ve not had the energy to finish yet, but I’m hoping to get them done before the end of the year. I have made progress on them this month and now I’m back in the habit of writing hopefully it’ll be a bit easier. It’s mostly for future Danni anyway.

Day 26 – New Tablet

I got very lucky and my new tablet was delivered Tuesday afternoon. I still have some final setting up to do but it’s working, rooted and it charges!

Tuesday was a good day. While on my computer I managed to sort out all my emails including setting up new filters so my inbox is less overwhelming, update my care call spreadsheet (43 different care workers so far this year, 87 since I started with the agency in 2017, not including any that weren’t on my rota), and play some World of Warcraft. Got to honoured with Rustbolt Resistance and did some of the Pilgrim’s Bounty quests so I’m happy there.

The physiotherapist came, and it was fine. I’m to continue doing the exercises I’ve got when I can, and when I’m ready to progress to more ask my GP to refer me back and she’ll see me again. Since it’s going to take a while to see much improvement it makes sense to discharge me, but if I’ve got any issues I’m just to ask for another referral. She also gave me some utensil holders from the OTs to see if it’ll make feeding myself bit easier. They’re different from the ones I’ve already tried and it looks like they might work so I’m excited to try them.

I was still feeling okay after the physio left so I talked Johan into taking me to the barbers. It was raining, and it felt amazing to feel it on my face. It was a little awkward and scary getting me up the step inside, but inside was spacious and they had no problems shaving my head. There was no music playing which was a bonus, and the other barber putting the telly on didn’t bother me with my ear plugs in.

Danni in their wheelchair. They are smiling and have a shaved head with only a tiny amount of hair left, and are wearing a purple coat and glasses.

They took a lot of care, and I felt more comfortable than at the other barber I’ve been to. It was also cheaper (though I added a tip as I was so happy). They called us both sir, which I found amusing (I’m normally read as female by people under 70). The only minor downside was the smelly spray they used at the end (nice scent but a bit strong for me) but I’ll just ask them not to use it next time. I’m definitely going back there, and as it’s so close hopefully more frequently than every 7 months.

My tablet arrived at the local shop not long after I got back, so Johan went to get it then left me with it and the Surface (so I could put TeamWin on it) while he went to the doctors to sort out my tramadol (the electronic prescription didn’t go through properly or something, but I have them now). By the time he got back I was getting pretty tired as I’d been up since Monday evening, so he went for his run while I got my tablet to a working state then went to sleep.

I’m writing this on Wednesday morning (though it’s still Tuesday in some of America) and I’m a bit annoyed as my digestive system has decided to play up. Nothing I haven’t experienced before but it hurts and I’d like more sleep please. Hopefully it’ll settle down so I can rest more. I suspect the rest of the day I’ll be finishing sorting out my tablet and resting after yesterday.

While I was asleep Johan managed to get my old tablet to charge with one specific cable (probably bent just right to make contact) so he’s taken that, wiped it (as I didn’t need the nandroid backup as I’d already done a fresh install of Resurrection Remix) and installed Pixel Experience (Android 10). He says it runs much faster than when I was using it (I need a lot of accessibility apps which slow things down) so he’s happy, and I’m happy it’s not just a deadweight. I’m still glad I replaced it as I move so much that I’d probably mess the cable up so it no longer charged at all. Yay!