"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Author: Danni
The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
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.
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!
My lovely tablet, a Pixel C, has pretty much died. The charging port has been tempremental for a while, and this last week it’s been really difficult to get it to charge at all. Yesterday I bought a second hand Pixel C from eBay (I was looking at new tablets, but none of the ones I could justify really met my specific needs or were worse than what I had). It’s due to arrive either Tuesday or Wednesday.
This morning I realised it was refusing to charge above 15%, and that was with a lot of wiggling the cable in the port and stuff. Realising that I might not have long left, I quickly did the most important app backups and sent them to my phone. I also did a nandroid backup, but during it I couldn’t get it to charge at all so it dropped down to what it said was 7%. I was hoping that would be enough to boot it and move the nandroid backup over to my phone (the port no longer sees my USB C hard drive) but unfortunately just trying to boot it sent it to 0% and it shut down completely.
I left the charging cable apparently charging while I slept through the day, but when trying to boot it again it never even got to the lock screen before turning off again. That was with a dedicated USB C charger. I’ve swapped to a USB A to USB C cable to see if that will at least trickle charge (it was a bit more reliable last week, though wasn’t charging it enough while on it was while off) in the hope that it’ll get enough to be able to grab the nandroid backup. Tapping the lightbar on the back, it is flashing to say it’s charging, but I don’t know how accurate that is.
In the worst case scenario, I have a nandroid backup from September, backups of all the apps I was using from the 19th November on my Google Drive, and backups of the couple of apps that don’t cloud sync and I would miss the progress I’d made since then on from Monday morning on my phone. Luckily most apps cloud sync, so having the backups is just for convinence of not needing to login and redo all the settings again.
I might take the opportunity to try a different rom out on my new tablet. I was running Ressurection Remix, which I love the customisability of. It was on Android Pie (9) and was pretty suited to my needs. I do want to try Android 10 though, and there are beta roms for Lineage and Pixel Experience available for that. There are a couple of things not working, but other than the camera (which I don’t use as the one on my phone is much better) the same issues existed on my previous rom and didn’t bother me. If I don’t like them, it’s not hard for me to go back to Ressurection Remix. I even made a document of what to do when things go wrong so if I break it again I can fix it myself with my computer/Surface.
In the meantime, I’m mostly using my phone, though I’m on my desktop PC tonight as I’m feeling up to it and wanted to sort my emails out and maybe even play some World of Warcraft. My phone is great, but I struggle with the smaller screen for a lot of things, especially as I need such large text size when my eyes are playing up. I also keep hitting the wrong stuff. I miss using my tablet.
Tuesday afternoon I have the physiotherapist coming out again, but hopefully it’ll go better now I’m no longer feeling horrendous 😛 Finally getting over the cold(s) has made a massive difference in how I feel, and means I can do more with less payback. My main issue with doing some of the exercises since I’ve been well enough has my sleeping pattern meaning Johan isn’t always awake enough to do them when I’m up to them, and I need his help. I’ve been doing the one I can without him, but I’m not even sure if I’ve been doing it right. As they don’t take very long if I’m well enough to do them all at once I’m hoping to fit them in before he leaves in the morning if possible.
This week at some point I want to see the barber. If I’m feeling okay after the physio, maybe I’ll go tomorrow. If not, probably later in the week, possibly Saturday between Johan doing Parkrun and the birthday party he’s going to (Johan is very busy :P). My hair is now long enough to tangle and hurt so the sooner I get it off, the better. I have some lovely penguin hats to wear so I don’t get cold. Penguins are awesome 🙂
Ended up going to sleep about 6am so by the time I woke up again the barber’s had shut, so I didn’t go. Not a major issue, I’ll hopefully get there next week at some point.
Since my brain was functioning relatively well when I did wake up, I decided to do a food shop. I went with Morrisons through Prime Now for same day delivery which is both good and bad.
The good: I finished the order just before 6pm, it arrived just after 8pm (8-10pm slot). This meant I could have pizza for tea with the carers rather than fish fingers, chips and veg for the third night in a row. I can also track the delivery driver on their way here.
The bad: the one substitution they told me about was wrong (it wasn’t the original product or the one they said they’d replaced it with). They also substituted a couple of other products with slightly different ones but more? They also don’t email what you ordered and it’s awkward finding past orders in the app. The app also has some very weird results for searches.
I got a refund on the replacement replacement as it was more than I was wanting to pay, and I got a message to say I didn’t need to return it, probably as it was a £1 bar of chocolate. Johan told me not to ask to return the Polish sausage (I ordered one pack of bacon flavour, got two packs of normal without it showing on the app) as he’d eat the extra. We also got 900g of chicken breast fillets in three packs instead of the one pack of 600g I ordered, so I guess we won there. I suspect whoever was doing the packing just wanted to get home.
I’ll still use it as not being able to go out to the supermarket it’s really handy, I generally like Morrisons, and free same day delivery over £40 is awesome. I do wish I could tip the delivery drivers like with the usual Prime Now as I tend to order lots of heavy items and I feel a bit guilty, but there isn’t the option for that and I don’t have much cash on me.
I was a bit annoyed at my body when it decided to ramp up the nausea levels just before 9pm, and I have no idea why. Luckily my antiemetic worked, though I’m now starting to get the drowsiness side effect from it so will be sleeping again soon. I was hoping to read a bit of an ebook or sort my emails tonight but that can wait. I still did something productive and hard. I also have lots of chocolate now and that makes me happy 😊
I think I’m going through a good patch (for me), though we’ll see if that’s the still the case if I get payback from all I’ve done the last few days, including a full body bed bath, a hair wash with water, and more cuddles today 😛
I slept through most of the day, which was good as Johan was out for a Christmas thingie with one of his volunteer things. I woke up in the evening, just before he got home which was great.
This time it was Johan who’d had alcohol, and it made him more open and soppy. We ended up chatting for hours about things, some important, some not. He gave me some awesome news that I can’t share yet but I’m super excited by. He also ended up doing something really brave even though he was scared, and I’m super proud of him.
We didn’t cuddle the entire time as it would have been far too much for me, but the cuddles we did have were awesome. I wish it didn’t hurt but it’s still worth it when I can manage it. Hopefully I won’t get too much payback from everything.
If I’m awake and well enough and Johan is okay I’m hoping to go to the local barbers tomorrow to get my head shaved again, now hair isn’t disgusting. We’ve found one that’s only a few hundred metres from where I live, and only has a small step so Johan should be able to get me in. Someone complained in the reviews that they don’t play music or the radio, which sounds great to me 😛 I might not make it as it closes at 3pm on a Sunday, but we’ll see. If not, I’m going to try and make it during the week while my hair isn’t too bad. Hopefully it’ll be fine.
This evening I was finally well enough at the time one of my favourite care workers was here to have a proper hair wash, with water and shampoo. The last time was in July so it was desperately needed. I had used shampoo caps in between, but they stop working so well after a couple of months. It’s taken a couple of hours but I’ve now stopped shaking from the pain and exertion so I can write this blog post. I am happy 🙂
The last few weeks I’ve had quite a few new care workers. Some I’ve missed by being asleep when they’ve come (if anyone can figure out how to have set time care calls when you have no sleeping pattern, let me know) but others I’ve met.
Most of them come with one of my regular care workers, especially T, who is my main evening carer. T is one of my favourites, who I know very well at this point and trust her with the tasks that are most painful to me, such as tonight’s hair washing and having a body wash earlier this week (might have been yesterday? I can’t quite remember). She’s also a pretty good judge of who I’m likely to do well with and who I’m likely to struggle with, so if she’s previously worked with the new care workers she lets me know how it’s been.
Some of them have been fine. I have to have things done in a certain way or it makes me very anxious, but I have written an instruction book that goes through everything step by step. The ones who are willing to read the book and follow it usually do okay. If they listen to T as well, it can go pretty well, and usually I’m less nervous about their next call. Tonight I had a new care worker who listened, followed instructions, and I got on with quite well.
Some of them… not so much. One, who luckily left after a few weeks, was genuinely scary. Not because she was abusive or anything, but because she basically needed care herself. She needed every instruction given to her multiple times, and even then would get it wrong. I’ve never known it take 20 minutes to fill my Hydrant with squash before, but she took that long even with help. I heard some stories about her from the other care workers that were terrifying (including trying to hoist someone incorrectly and nearly dropping someone down the stairs), and just mentioning her name to those who had worked with her caused despair. I was surprised that she hadn’t been fired but luckily she left herself.
Others just don’t listen to the more experienced care worker while here. I find having two care workers in my room overwhelming while having personal care done, so usually one goes into the kitchen to sort my drinks and food and such, while the other does my personal care. It works well, and means we get everything I need doing in the time I have. The book the care workers have to fill in is kept in the kitchen, where there’s a brighter light (as I’m light sensitive), there’s the counter to lean on and it is better for me.
Last week I had one that just wouldn’t listen to T. It was frustrating for both of us. Instead of doing the book in the kitchen, she decided to bring it into my room and stood in the middle trying to lean on the back of my wheelchair to fill it in. There’s not very much space in my room so she was just getting in T’s way, and wouldn’t move when asked. I’d ran out of baby wipes and was just standing there while T was looking for the box with them in, which meant she couldn’t find them and we had to use my more expensive bath in bed wipes. Turns out the new care worker had been pretty much on top of them. There was also just something about her that made me feel very uneasy, and by the end of it I was more knackered and overwhelmed than normal. The next time I saw T she told me she was about as helpful at the other calls.
I got my rota for next week and saw that she’d been assigned to work with T for two nights. I had a suspicion that T would be asking for that to be changed, and when she came tonight she confirmed that I was having two of my more regular, liked carers coming instead. She even talked one of the care workers into coming in on her day off so she didn’t have to work with that new care worker. I am relieved, and there’s only one completely new care worker on my rota for next week.
There is a lot of turnover in care work. Most of my regular care workers have been with this agency for a year or longer, but the organisation has gotten worse over the last year or so (see also the saga of it taking eight months before they’d stop sending a care worker here that I’d banned) and it’s resulted in quite a few of the best workers going elsewhere. I try to give new care workers a chance, and know that sometimes first impressions can sometimes be wrong (one that I thought was super patronising the first time I met her turned out to be lovely and is now one of my favourites). Sometimes though there are care workers who I’m just incompatible with.
Of the over 80 care workers I’ve had with this agency, I’ve only had to ban four of them, which considering I’m autistic and picky about how things are done is not bad. There have been some that I only saw once or twice before they left, often because they realised that this job wasn’t for them. It’s definitely not paid well enough, and I suspect some of those who don’t last only started because it’s one of the few jobs that is always seeking new people. It does take a certain set of skills though, and not everyone has them (neither Johan or I could do it, even if I were perfectly healthy). My favourite care workers are those who are doing the job because they want to, and it shows.
A couple of years ago I think the care worker who was a danger to clients and herself wouldn’t have got past the shadowing stage. When I joined the agency it was the best in the area, was decently ran and most of the care workers were happy. Nowadays, not so much. They took on too many new clients too quickly, which meant needing a lot of new care workers quickly and overworking the ones they already had, resulting in quite a few quitting and others threatening. It wasn’t unusual for one of my favourite care workers to end up with 90+ hours a week, which is just dangerous, especially on a regular basis. It took her threatening to quit before they reduced her hours to something a bit more reasonable (though still a lot higher than 48 hours a week) and she’s starting to learn to say no when asked to do more.
For me, my main issue is the disorganisation. I need to know who is coming and when, and to be informed of any changes. If this is done, even at short notice, then I’ll be fine. If it isn’t, and these days it’s unusual for me to get told of changes, then I can’t cope and panic. This makes me more ill, and has caused problems for Johan as he’s often had to abandon what he’s doing to be able to come and calm me down. The agency has been aware of this since we joined, and one of the owners has an autistic son so should know why it’s needed.
What doesn’t help is I get a rota on a Friday that is for the following week starting on Monday, but by the next Friday the weekend calls have often changed, and though the care workers get an updated rota I don’t. I don’t understand why they don’t just give me a rota on a Friday for a week starting the Saturday, so if anything changes at the weekend it’ll be reflected in my rota.
I also know that emergencies happen. They have Johan’s mobile number, and they are supposed to ring or text him if something happens. Even a couple of minutes notice (Johan messages me if he’s out so I still find out) makes a big difference if they can give it. I have some care workers now who refuse to cover for my calls unless I’m told they’re coming, as they’ve seen what it’s like for me.
The worst is when they change the call time and don’t tell me. I’m pretty okay with care workers being late, as stuff happens, calls can overrun, there can be traffic and such. I do start to worry if they don’t arrive during my call time though (half an hour for my lunch and afternoon calls, 45 minutes for my evening call), especially as I’ve had care workers not turn up in the past (mostly with previous agencies). Johan struggles to initiate communication but if someone doesn’t turn up he usually can let them know and find out who is coming and when they’re likely to be here (sometimes it’s just a bad emergency, sometimes a care worker has just not turned up and they have to find cover).
What I can’t cope with is them being early. It took me years to manage not to panic if they arrived the allowed 15 minutes before my call, and I now have alerts set to go off then so I am ready for them. Sometimes though they change the call time to earlier than is on my rota, and don’t tell me. My brain explodes and I just can’t cope with it, and often the care worker has no idea what’s wrong as it was correct on their rota. If it’s a combination of an earlier call and a new care worker, I often end up in meltdown or shutdown. I wish I didn’t react like that but receiving personal care is already scary and painful, I struggle with strangers especially when alone (if Johan knows I’m getting a new care worker on a single call, he tries to be here with me) and changes to my routine are difficult to cope with. If they just let me know, everything is fine.
Wow this turned into a bit of a rant. Compared to the previous care agencies I’ve had, this is still the best, even if it is going downhill a bit at the moment. Most of the care workers I have are nice, my most regular ones are awesome and I get on with them great, and most of the time everything goes as well as it can. Previous agencies have included care workers deliberately causing me pain (and being told by my then social worker that I just had to put up with it), calls being missed and not having anyone cover them, not sending me rotas at all so I panicked at every call, and even being put into special measures by the CQC and losing the contract with the council. In comparison, this one is much better. I just wish they’d sort things out so it is better for the clients and the care workers.
