Day 24 – Chocolate is Good

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 😊

Day 23 – More Cuddles

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.

Day 22 – Clean Hair

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 🙂

Danni, a pale white person with blue eyes and glasses. They have short, combed light brown hair that is clean.

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.

Day 20 – Cuddles

Tuesday night I decided I wanted an alcoholic drink. I’m lucky in that I don’t have alcohol intolerance any more, and alcohol reduces my pain, anxiety and muscle spasms. If I didn’t have a family history of alcoholism and didn’t have to stop my painkillers to drink I might have it more often, but I keep it as an occasional treat. I also get quite giggly and it’s a bit harder to judge if I’m overdoing it.

Being in less pain meant I could cope more with touch, and I ended up having lots of cuddles with Johan. Since I’m normally in too much pain for even a short hug, this was very much wanted. Not being able to have hugs very often is one of the hardest parts of being this ill.

I ended up sleeping most of Wednesday, only waking up when my digestive system did. Which is fine when there’s someone here, not so much when I have to wait 90 minutes for someone to come help me. Being incontinent sucks sometimes.

Using a toilet again is one of the goals I’ve had on my list for several years now but I’ve yet to manage it. Silly body not liking being upright and incontinence meaning I don’t get enough warning to use the shower chair as a commode.

Otherwise sleep is good. Not being able to choose the times of it sucks a bit, and I feel horrendous when I wake up, but not sleeping means less cope and more worse symptoms. It did mean this blog post was late but I don’t mind that.

Day 14 – Power Cut

I’m hoping that one day soon I get to have a peaceful day where I’m not just trying to minimise payback from activities and external events. Today was not going to be that day.

I didn’t sleep amazingly well last night, so I was hoping to be able to nap a bit this morning. That wasn’t going to happen. The council contractors arrived at ten to eight to start doing more work on the upstairs flat. I’ve got no idea what they’re doing or why it needs so much work when the last tenants were only there for a few months, but it involves drills and banging and lots of stomping on the stairs and slamming of doors.

Soon after 11am I got a phone call from Northern Powergrid on my mobile. I didn’t answer because I can’t manage phone calls. What I did do was go on the website to discover that there was a power cut in my area, including my postcode. At this point I still had power so I just carried on trying to distract myself from the noise, while also trying to get my phone and tablet charged (I had accidentally knocked my phone charger’s plug out so it hadn’t charged overnight, and the charging port on my tablet is pretty dodgy so I have to keep messing with it to get it to charge).

Lunchtime and it was one of my regular care workers, and she had a new one shadowing which I was okay with. She told me that half the street didn’t have any power, which confirmed what I’d seen online. The new care worker seemed nice and liked my care book and my penguins, so hopefully if I get her again it should be okay. Only problem is she has the same first name as one of my other care workers so that’s going to be confusing, especially as I forgot to ask for her surname.

At some point there was noise outside as well as noise from upstairs. It sounded like they were digging up the path outside my window (they were). Just before 3pm, I lost power. Luckily my phone had gotten pretty charged up by then, so I was able to let Johan know immediately. My mattress pump started complaining about the lack of power, but I couldn’t figure out what was causing the noise.

I keep a couple of torches next to my bed partially in case of this (and partially as one is also a laser pointer I like to play with) so I was able to use one to grab my battery powered penguin lights and I also spotted a load of glow sticks. I tried to find my battery pack but it wasn’t in my reach, so I grabbed the glow sticks and made a necklace, two bracelets and a butterfly toy from them. The glow sticks are a couple of years old so not the brightest now, but since my room is really dark without lights they still looked cool.

A very dark photo of Danni. Their face can just be seen by the light of a purple glow stick necklace and glow stick toy.

My afternoon care worker arrived at about half three. She couldn’t heat up my penguins as no power means no microwave, but she was able to sort my other stuff out using a torch. She did quickly look for my battery pack and some spare batteries for my penguin lights as they were pretty dim, but couldn’t find either. She also turned the alarm off my mattress pump which I was very grateful for.

Once she was gone I spent most of my time listening to the Bilbcast while on Twitter and playing with my glow stick toy. The noise from upstairs had stopped (I guess a power cut will do that) but the noise of digging up the path was pretty horrendous. Bilbcast on near max volume plus ear plugs and ear muffs meant I just about managed. The lack of heat (I usually have warm penguins, an electric blanket and a heat pad) meant I was starting to get cold and pain was becoming a problem, but there wasn’t much I could do about it.

Johan got home around quarter to six, and I immediately set him to finding me some warm socks and my battery pack (which was in my medicine drawer for some reason). Just as he was looking for replacement batteries the power came back on. We got confirmation via one of the workers that it was going to stay on so I got my penguins heated and turned my blanket on. It helped.

Since then Johan has gone out for a run, and via Twitter I was able to sort out getting Northern Powergrid to only send me text messages in future. I’m hoping not to have too much payback from this, but I’ve been running off adrenaline all day so we’ll see. I still have a cold and my arm is sore from the flu jab. Hopefully tomorrow will be quieter, though there’s a massive hole in the path that needs to be filled in.