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 🙂
I hope everyone has had as good a holiday/winter season as is possible, and that the next year is awesome for you 🙂
I’ve had a really good Christmas. Got spoilt again (lots of purple, warm stuff and penguins), and Johan made roast chicken with his amazing potatoes that were perfect. I saw Sammie a couple of days before Christmas so she could get her presents, then spoke to her on video chat on Christmas Day itself. Unfortunately she was ill for her birthday itself, but she’s feeling a bit better now and we hope to take her out to celebrate at some point.
I went out four times in December, which is the most in a very long time. First to the cinema with Sammie and Johan for the Chronic Illness Christmas Party, which was also the first time I’d been to the cinema in over eight years. We saw Miracle on 34th Street (90s version) and it was brilliant. I took my own subtitles on my tablet which worked really well (the cinema would have put them on the main screen for me, but I didn’t have my new glasses yet so I wouldn’t have been able to read them properly, and this way they didn’t disturb anyone else). The only minor issue was the lift breaking down, which with 20+ chronically ill people, 9 being wheelchair users, was a slight problem. Luckily they got an engineer within 15 minutes, and half an hour later the lift was working again! We then went to see Fenwick’s Christmas window display which was awesome (Sammie couldn’t remember having seen it before, and the last time I took her she was 2) then got the bus home.
Next week I went out to vote. Ian Mearns was returned as our MP for Labour, but the Tories getting a large majority is really worrying, especially for ill and disabled people. I’m just going to concentrate on the positives, like how awesome people are that are helping those affected by government policies and helping make the world a better place.
For the fourth Sunday of Advent I went to the St James and St Bede’s church for a carol service and it was awesome! It was the first time I’d been left without someone I knew while not in a bed in years, as Johan doesn’t do church but was willing to push me there and back. I sang a verse here and their of some songs, but mostly just listened to the others singing. Despite being in my chair and without anyone I knew, my heart rate dropped lower than my normal resting rate, which I’m taking as a good thing 🙂 Afterwards Johan came to get me (he’d been in the local McDonalds) and I had a mince pie and we chatted with the tech guy for a while. I’m wanting to go back at some point but the services are usually at 10am which is going to be pushing it most of the time.
As it’s technically my parish church I want to email the vicar and find out how LGBT+ friendly it is, and also ask about confirmation as I missed mine by being in hospital then was too ill for too long, but I’ve not been up to it yet (I’m also not sure if the email address I’ve found for the vicar is current).
Saturday after Christmas the Running Ninjas were at Gateshead Parkrun in Saltwell Park, and Johan asked them to change the breakfast location to one I could get to 😛 They agreed, and I was well enough to go watch them run and then go for breakfast afterwards. It was awesome seeing everyone again, and I got chatting to one of the mini ninjas while they were running. I was overwhelmed during breakfast by the amount of people and noise, but I had my noise cancelling headphones so I just phased out a lot and accepted that I’d not be able to understand most things. Afterwards we looked in a couple of shops before going home.
My payback for going out is now only a few days, rather than a few weeks, which is making me very happy. I’ve been on my computer a few times in the last few weeks as well. Mostly sorting out emails, trying to do food shops and playing World of Warcraft. Shopping and sorting money still makes me feel horrendous, worse than going out does, so I have to be really careful. I still haven’t done all my Christmas present shopping because of that.
New Year’s Eve I was hoping to go on the ramp to watch the fireworks, but Johan was too tired so I watched the London ones on the telly instead. Then I turned over to BBC 2 and got Rick Rolled. Sammie did as well which made me feel a bit better 😛 I’m hoping to do my goals and review posts soon but don’t want to put too much pressure on myself. Hopefully I continue with this improvement and I’ll be able to go on my computer more often 🙂
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.
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.
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’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.
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.
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).
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.
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.
I’ve managed to write 30 blog posts for November. Yay! Being flexible with the timings (it’s still the 30th in the Americas) definitely helped as my lack of sleeping pattern makes it very difficult to stick to the 24 hours of a normal day. I’m backdating this post to make it show in the right month for future Danni.
As I expected I ended up spending most of the day asleep. Before that though I spent a considerable amount of time cuddling Johan, meaning he had to take public transport to Parkrun instead of running there. I’m so mean 😛
We had the Australia against Pakistan cricket match on the telly and I got to see Warner make 300 runs. In football he’d have got a yellow card for excessive celebration 😉 Even though I’m not usually an Australian supporter, it is an incredible achievement and it’s a shame they had to declare so we couldn’t find out how many he could get.
Johan woke me up briefly before he left for the party he was going to. He had trouble finding his nice shoes, and as my feet are so much bigger than his (a size 9 to his size 6) that’s one thing he can’t borrow from me. In the process of looking for them he did find my new key lanyard, so now I just need to find my pins to put on it. I think he ended up wearing a pair of running shoes which is more him anyway.
I never did have a meal as I was asleep for all the care calls. I had a couple of Ritz crackers before going back to sleep and they don’t seem to have caused any issues. Since waking up again I’ve had some Polish sausage so that’ll be the real test. If I digest that okay I’ll probably be fine. My abdominal pain is back down to its normal grumbly level so that’s also a good sign.
I’ve gotten very confused by one of the items I tried to order yesterday. I got an email saying it had been cancelled, so I went and ordered an alternative somewhere else. Then this morning I got a dispatch notice, and checking PayPal it seems it went through twice but only one got cancelled? The address it’s being sent to is also not the one I usually use for deliveries so I’m not sure what is going on. Worst case scenario I either refund this one or the alternative, or I keep it for myself or Johan. Luckily the item isn’t that expensive and it was a lot cheaper than normal.
Now I’m back in the habit of writing, I’m hoping to spend a bit of time each day working on the draft posts I’ve got to finish. One of them is close to done so hopefully it won’t be long. They do require more concentration than these brain dumps do so I’ll need to take that into account, but I find blogging helpful so I want to carry on.
Advent is about to start and I’m hoping I’ll not spend the majority of it super ill. Next week I’m taking Sammie to the cinema for the first time so I’ll need to take it easy this week. Johan also found the Christmas tree so I’ll try and talk him into putting it up this Sunday. I’ve still got things to sort out but having a brain that vaguely works should make it much easier. The hardest part will be not overdoing it. I’m excited!
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 🙂