January was a write-off due to getting two colds. Right now I’m full of caffeine and taking advantage of my slightly less drowsiness to write this post.
Most years I make goals for the year to come. Last year I didn’t get around to making them, as I wasn’t doing too well at the beginning of the year. I did make some in 2018, but I can’t remember how well I did with them (other than only showering once). Anyway, the goals.
Have at least 2 baths or showers – Last year I managed one bath and no showers. I do need to get in touch with an OT to try and fix the shower chair not working for me problem, but hopefully when I go into respite I’ll have at least one bath and I also have an inflatable one that I just need to figure out the logistics of using (and help the other half be less scared of it :P).
Use a toilet or commode – This is staying on the list until I actually manage it 😛
Go out somewhere nice with Sammie – Last year we went to watch the Great North Run and to the cinema, and it’s great having a teenager who wants to spend time with her parents, so hopefully we’ll do something nice. One of her birthday presents is outings this year, though we’re still working out the details.
Keep up with Daylio (my diary) – This is really useful for keeping track of what I’ve done when, and is why I know I had one bath and no showers last year (and that the bath was in April). At the beginning of January I also added tracking my cognitive/pain/sensory and physical symptoms seperately, as sometimes I can be doing great with light and noise but be unable to move. Right now, I’m doing okay for cognitive (which is how I’m writing this), good for sensory, but pain is high and moving makes me feel horrendous. It’ll be interesting to see how much my mood is related to my symptoms, but to know that I need to keep it up to date.
Make progress on my Stuff that Helps series – Still thinking of a better name for it, but I’m hoping to take less than 18 months for the next post. I have the list of items ready, just need to describe how they’re useful.
Sort out my Twitter – I follow too many people, and can’t keep up with my timeline even though I spend quite a bit of time on there. This year I want to go through and unfollow some and put those remaining in lists so I have some chance of keeping up. To do this I need to get over the guilt I feel when I unfollow people who are awesome but aren’t ideal for me to follow.
Get my room more organised – this one is going to take some help, as I can’t do much, but I’d like my room to be sorted. A good start would be getting my clothes in my chest of drawers. I’d also like the wrappers removed from my rainbow roses.
Read 20 books – I managed this last year, and I’m hoping to do so again this year. My main problem is choosing what to read.
That is enough to be getting on with. I’m also hoping to get on my computer and play more World of Warcraft, but that is very health dependent. I also want to make a list of films and TV shows I want to watch now that I’m able to do so. Hopefully I’ll stop getting colds so I can get back to where I was in December and doing stuff 🙂
2019 was an interesting year. Apart from November, I didn’t blog much, but I did do some cool things. At the end of the year I improved quite a bit, which was awesome 🙂
1. What did you do in 2019 that you’d never done before? Took Sammie to the cinema 🙂 That was awesome.
2. Did you keep your New Year’s Goals, and will you make more for next year? I didn’t end up blogging my goals, so I can’t remember what they were. I’ll try and get them done this year.
3. Did anyone close to you give birth? A couple of online friends had super adorable babies in 2019.
4. Did anyone close to you die? No one super close, but a few people I used to know well. Some weren’t surprising (though still sad), a couple were more unexpected.
5. Where did you visit? Went into Newcastle in February on a date with Johan that involved trains and bridges. I finally saw the garden we have in April, and went on the path outside. Went into Gateshead and Newcastle in April, which included visiting the game developer Johan spends lots of time at. Went around the corner to vote in May and December. Newcastle again for my birthday in June. Gateshead central library with Sammie in August. Watched the Great North Run with Sammie and Martin in September. Went to the closest barbers in November. Big adventure to Tyneside Cinema and Fenwick’s Christmas window with Sammie in December, and a carol service at my parish church and then watching the Running Ninjas in my local park later in the month. Also went to the care home in March so lots of outings this year 🙂
6. What would you like to have in 2020 that you lacked in 2019? A functioning body. (Sammie’s suggestion, which is accurate :P)
7. What will you most remember from 2019 and why? Going to watch the Great North Run with Sammie and Martin, and taking Sammie to the cinema. They were both awesome.
8. What was your biggest achievement of the year? Going to the cinema for the first time in over eight years. That Sammie came with me made it even more awesome.
9. What was your biggest failure? Not managing a shower at all. One day I might contact the OT and let them know the shower chair isn’t suitable. Not sure if that will be this year or not though. Hopefully my recent improvement will mean I can use it again soon.
10. Did you suffer any new illness or injury? Just colds and even more migraines. I’ll take that as a good thing 🙂
11. What was the best thing someone gave you? Johan’s potatoes 😛 Also cuddles from Johan and Sammie. Cuddles are awesome.
12. Who impressed you this year? Sammie for getting through a very tough time successfully. Johan continued being awesome. Friends doing awesome stuff. People surviving.
13. What made you appalled and/or depressed? Politics. Mostly politics and the stuff around politics.
14. Other than food, bills and disability stuff, where did most of your money go? Johan, Sammie and eBooks. I still haven’t successfully reduced my spending on them 😛
15. What did you get really, really, really excited about? Potatoes! Sammie! Johan! Bridges! Penguins! Trains! Going Outside! Elmers! Cute babies! Cats!
16. What big events will you remember most from 2019? Probably the cinema trip. Also the country deciding they hate vulnerable people.
17. Compared to this time last year, are you: a) happier or sadder? Happier. Still on a high from going to the cinema (and Johan’s potatoes :P) b) healthier or more ill? Doing better physically, in that I get less payback from outings so can go out more. Cognitively about the same. c) richer or poorer? My income is about the same, but bills have gone up so a little bit poorer. We manage though 🙂
18. What do you wish you’d done more of? Talking to people. It’s still one of the most draining things for me to do, so I don’t get to do it much.
19. What do you wish you’d done less of? Panicking. I no cope well with being home alone. Johan goes out most days. It no go well.
20. How did you spend Christmas? Watching telly, eating amazing food (Johan’s potatoes! Oh, and roast chicken and stuff), napping, chatting to Sammie and opening presents. It was a good day.
21. What did you love in 2019? Other than Johan, Sammie, and family, penguins, jaguars and cats are definitely up there. Seeing people responding to bad events with love and kindness was amazing.
22. How many trips out? Excluding the trip to and from the care home, I went to vote twice and had 10 fun trips to barbers and on the path and into Gateshead and Newcastle. This is an improvement 😀
23. What was your favourite TV programme? Steven Universe. I’ve yet to watch the film but the feels at the end of the season before the film were so much. I also really enjoyed The Good Place (and got Sammie into it).
24. Do you dislike anyone or anything now that you didn’t dislike this time last year? Sammie’s dislocated knee. Johan’s bad knee (he hurt it on the 29th December). No more injuries please.
25. What was the best book you read? Rush of Blood by Heather Shahan (sequel to last year’s favourite Burn the Ashes) was the best fiction book I read. Yes, You Are Trans Enough by Mia Violet was the best non-fiction book I read (and highly recommended to anyone who wants to learn more about coming out as trans, whether you’re trans or not).
26. What was your greatest media discovery? The Good Place on Netflix thanks to Rammi, and LockPicking Lawyer on YouTube (I can’t remember how I got watching them, but it’s really soothing and I’ve learnt a lot about what makes a lock good or bad).
I’ve yet to play it, but I’ve really enjoyed watching others play Untitled Goose Game, and the memes that came from it.
27. What did you want and get? Johan’s potatoes (but not for my birthday, only Christmas). Going to the cinema (and other places) with Sammie. Penguins. It was a good year.
28. What did you want and not get? A shower. To see friends. A miracle cure 😛
29. What was your favourite film of this year? Guardians of the Galaxy 2. It was fun 🙂
30. What did you do on your birthday? Went into Gateshead and Newcastle! Had cocktails and birthday cake and went on trains and saw bridges!
31. What one thing would have made your year immeasurably more satisfying? Less TERFs/transphobia. It sucks.
32. How would you describe your personal fashion concept in 2019? T-shirts/pyjama tops with no bottoms in bed 😛 Dress and mermaid tail out of bed. Usually purple, penguin and/or cat 🙂
33. What kept you sane? Johan, Sammie and Penguins. Being able to check if my hallucinations were real or not was useful as well.
34. Which celebrity/public figure did you fancy the most? Still Jessica Kellgren-Fozard. Luckily Johan’s fine with it 😛
35. What political issue stirred you the most? All of them. Having a large Tory majority government means it’s not great for vulnerable people, and that’s before you add Brexit.
36. Who do you miss? My friends. Ron. Everyone I struggle to communicate with.
37. Who was the best new person you met? The other people at the Spoonie Christmas Party were awesome 🙂
38. What was the best thing you ate? Johan’s potatoes. I still want them for my birthday 😛
39. Tell us a valuable life lesson you learned in 2019? It is a lovely day in the village. And you are a horrible goose.
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!