Day 30 – The End

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!

Day 29 – Shopping

Payback wasn’t that bad. One day. Seems this improving thing is good 🙂 Hopefully this means I’ll be fine going to the cinema in just over a week.

I spent most of the day trying to sort out Christmas and birthday shopping for Sammie. I was mostly successful, and have now bought the bulk of her physical presents. I still have a couple to sort out, but I’m glad that is mostly done.

In between, I was moaning to/with the care workers about the new phone system they’re starting to use. I have major concerns with it, as I was told it was just a login system (fine), but it contains all my care plans, key safe code, personal information, and the care workers are having to record what they do in far too much detail.

I’m not on any kind of fluid monitoring as I don’t need it, but they have to say exactly how much of which drink they make me, how much I drink, and how much they’re disposing of. The previous paper system just involved them writing “filled drinks bottles”. I have as needed medication, and instead of just a tick box to say I don’t need it at a call, they have to type it out on a tiny screen. It’s like that for everything on my care plan, and it takes about 10 minutes for the care worker who is good with phones to fill it in, which when my calls are 30 or 45 minutes is a large chunk of time.

I don’t know where the data is stored, how secure it is, who has access, or why they’re wanting to know such personal stuff that isn’t needed for them to do their jobs properly. I previously didn’t even have the care workers log in here as I trusted them to turn up and didn’t mind them running late. The paper logs were picked up every month and that was fine, and if I’d forgotten something I’d just ask Johan to go check what they’d written.

They’re meant to replace the communication books, yet at least at the moment there’s no way for care workers to share information with each other. So if a care worker from my lunch call needs to pass a message on to my afternoon care worker (such as me being asleep so I’ll need food at the next call) then there’s no way to pass that on. Now I’m mostly able to communicate so we’d probably be able to muddle through (though I forget things I need all the time unless they prompt me), but many clients have dementia or other conditions which would make that impossible.

The worst thing about it is I wasn’t told about it (beyond it being a login system) and only found out how much personal data they were recording when I asked a care worker why it was taking so long. I definitely don’t constent to them recording my life in such detail. I keep a daily diary of what I do and even I don’t track my exact food and drink intake, because I don’t need to.

I really need to send an email to the agency to ask a lot of questions, request a copy of all the data they have stored about me, and tell them I do not consent to my data being used in this way. It’s nearly 5am though so maybe right now isn’t the time to do it. The care workers aren’t particularly happy either for various reasons, and not even the login system is working properly (and the QR code for them to scan is almost the full A4 size sheet of paper, so getting that to scan on the crappy cheap Android phones they’ve been given is really difficult to begin with). It’s a mess and a terrible idea.

When Johan got home I went on my desktop computer as I was feeling well enough and I was struggling to buy some of the items I wanted on my tablet. Chatted to Sammie for a bit, and managed the bulk of the shopping.

During my evening call I had a mini wash and changed into a clean nightie, and let one of the care workers (T) feed me soup as my stomach is still misbehaving and my hands are too shaky for a spoon at the moment. I hate being fed but she’s one of my favourites and I trust her.

I was planning on maybe going into World of Warcraft after doing the shopping, but instead I ended up sorting my Habitica stuff out, including working on my quest spreadsheet. I can now easily see how many quests I’ve yet to do and whether I already own the scrolls to them. It took a ridiculous amount of time for me to figure it out the correct formulas as my brain just wasn’t cooperating properly, but I was also hyperfocused on it and couldn’t stop until it was done. Still feel okay, just a bit tired now, so it’ll probably be fine.

Johan is out running Saturday morning and then has a party in the evening, so I’m not going to see much of him tomorrow. At this rate though I’ll probably be asleep so it’s fine. I’m looking forward to Advent starting on Sunday and I’m hoping to get the Christmas tree up early this year as I didn’t have it at all last year. I might have to ask the care workers to help me decorate my room, but it should be awesome.

My stomach is still not great, but I’ve not brought up any of my soup for about an hour so it’s improving. Tomorrow if it’s not hurting too much I might try one normal meal and see how it goes. I’ve got some lovely apples but when my tummy is like this it’s almost the worst thing for me to eat. Other than that and my usual stuff though I’m still really happy from going out on Tuesday and speaking to Sammie, so things are good 🙂

Day 28 – Zonk

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

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

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

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

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

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

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

Day 27 – Digestive Woes

I seem to have upset my digestive system. Since it can be upset by basically anything, I’m not entirely sure what it is this time, but it is quite annoying.

The worst part is having to wake Johan up multiple times a night for pad changes. He ends up being really tired the next day and I feel guilty, but he also tells me off if I don’t wake him up so I can’t win. The second worst part is the pain. For some reason I can’t cope as well with abdominal pain as well as my other various pains (the only worse one being dental/facial), so I get tired and grumpy from that. Heat helps a bit but I have to be careful not to burn myself.

My stomach isn’t currently working very well. I’m getting full and nauseous from much less food than normal (it took me 19 hours to eat one sandwich) and I’m bringing it back up for hours longer than I’m used to. My medication is also taking longer to get working as I’m still bringing it up an hour later (tramadol without the capsule tastes disgusting). It’s been dodgy on and off all my life, but sometimes it gets really bad and it seems like now is one of them.

I think I’m going to swap to mostly liquid and easily digested food for a couple of days to give it a chance to sort itself out. I usually do this when I haven’t got the spare energy to chew, but I’m fine with that at the moment. Silly body.

Other than that I’m still on a high from going out and getting my head shaved. I slept through most of the day though did get some reading done which I’m happy about. I’m expecting the worst of the payback to start hitting soon, so there may be even more sleep in my future, but that’s okay. I’m happy and that’s the important thing 😊

Day 26 – New Tablet

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

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

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

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

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

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

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

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

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