I’m doing pretty good for me. Having Johan home all the time means no waiting for urgent care and shorter waits for less urgent care, which means I’m physically doing a bit better. Not being alone in the flat most of the day is great for my anxiety, even though I’m still spending most of my time alone. Unlike most people, I am used to being unable to go out or see friends and family, so a few more months isn’t going to make much of a difference (I last got out of bed on the 29th of December).
Being that little bit better means I can do my favourite things, like play video games and read a bit. I’ve managed to watch Steven Universe The Movie, and the first two episodes of Steven Universe Future. I’ve caught up with YouTube videos I have full notifications turned on for. I’ve had video chats with Sammie, voice chats with Johan and even was in a group chat with other This is True supporters (that last one did mean I slept for most of the next two days, but was fun). I even got my loom bands out and made a strap for when I use utensils and things so they don’t go flying when I spasm (looms hold things together when they get chucked, luckily).
We’ve also had many friends and organisations check we’re okay and offered to help if we needed it. So far it’s fine. Between deliveries and our local shop, we’ve been able to get everything we’ve needed except chicken, and that we can work around. I’m very grateful we’re not forgotten and hope those who do need the help get it.
It feels really weird to be doing well during a global crisis. The reason Johan is home is because people are becoming ill and dying from a virus with no known treatment. People are losing jobs and worse. I saw on Twitter someone being told that instead of getting personal protective equipment for her PAs (impossible to source as a single person right now) she should go in a care home, despite having been exposed to someone with COVID-19 symptoms. Care homes are terrible places for disabled people even in the best of times. This is wrong, just for the need of some face masks.
There are still some struggles. As we’re doing a modified version of shielding for me (because full shielding is impossible if you need personal care and I’m technically not in the extremely vulnerable group, just in the likely to die if there’s not enough medical care available group) the lack of skin contact hand holds (we hold hands while Johan is wearing gloves instead) and hugs is hard. As is knowing I’ll not be seeing Sammie or friends in person for a while, after having plans to do so. Johan is starting to feel cooped up, so we’re trying to figure out the safest way for them to go out (the main risk being our neighbour). It’s also a bit frustrating being well enough to go out for the first time in months but not being able to for reasons outside of my control.
I’m in the middle of setting up some routines based on our current circumstances, as my previous ones were based around my care calls, which we’ve now cancelled (along with the cleaner). I’ve got a list of options for things to do so I spend less time trying to figure them out. I’m working on the best way to prompt Johan to do tasks now their routine has also been messed up, and to replace the prompts from the carers and the cleaner (the better care workers would let us know if things needed doing which helped).
One problem we’ve yet to solve is Johan getting overwhelmed if I ask for two things at once, even if I give an order to do them in. I need to do so as if I don’t, I forget the second thing while the first is being done, and Johan gets frustrated when I realise again 10 minutes or so after they’ve sat back down. I also forget it if I try to type it. I know Johan finds my memory problems one of the hardest parts of my illness to cope with, and this situation makes it really obvious.
I’m frustrated that I can’t be the carer that Johan needs. Johan is frustrated that they struggle with providing some of my care. We’re still doing mostly fine, and not having to travel to work (or volunteering) means Johan has been able to cook more which I appreciate. I just don’t know how I’m meant to feel, and that feels weird.
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.
I took this photo while chatting to Sammie (and Johan). I forgot to take a different one for the blog so it’ll do.
A mixed week overall. Some good bits, some bad bits. Had some long sleeps, watched some YouTube, and broke then fixed my tablet. On Friday I started crying before Johan left, rather than after (I don’t like being left alone so I cry for a bit after Johan leaves then try and distract myself) and it made me feel really guilty. I don’t want to stop Johan doing stuff, but I feel really vulnerable and lonely. and if anything the care calls make it worse as I hate being touched and don’t cope with lots of different people. Not sure there is much that can be done about it, and some of the problem is me sleeping through the times Johan is here and awake, but if I try and force a sleeping pattern I get worse really quickly.
On the good side, I found a light up balloon, so blew that up (my lungs being the only part of my body that work properly) and then played with it and annoyed Johan with it (initially I kept knocking it out of my reach so he had to fetch it, then I tied a string to it and it kept getting in the way when he was trying to help me). I also bought a fidget spinner, which I managed to play with once before Johan stole it 😛 I’ve only just got it back while writing this.
I’d been having an issue with my tablet not displaying the notification bar/navigation bar when swiping from the top or bottom in a full screen app. As my tablet doesn’t have hardware navigation buttons, it made it quite difficult to use, though my rom has a gesture setting that I used to go back to the homescreen. My first attempt at fixing it on Monday failed, but I managed to figure out part of the problem. On Wednesday I tried again, and on the fourth attempt was successful. As TeamWin recovery can’t format system without corrupting it (I don’t know why), I had to do it from fastboot to be able to reinstall my rom. The problem with full screen mode was in a setting saved to my Google account, so to fix it I had to set it up as a new device rather than using my backup. No idea what setting it was, but I’m glad to have it working properly again now. Luckily as I keep app backups using Titanium Backup it doesn’t take too long to get my tablet back to how I like it.
Watched quite a bit of YouTube this week, as well as the rockhopper chick cam at Edinburgh Zoo. I also watched Liverpool lose to Real Madrid in the Champion’s League Cup. I was upset by the two injuries, as I don’t like people being hurt and crying 🙁 I hope they’re both better soon. It was an entertaining game to watch even if the result wasn’t what I wanted.
Johan went to see a friend on Sunday, and I spoke to Sammie and watched more YouTube. Was having a decent day until just before 9pm, when a migraine started. What didn’t help was Johan giving me the medication for my overactive bladder instead of my antiemetic, which meant it took longer to get the nausea under control (as we weren’t certain which it was until it didn’t help my nausea). Luckily it’s not dangerous, just meant I had some extra side effects to deal with. We now have the medication for my overactive bladder in a dosette box which should mean it doesn’t happen again. I’ve also asked Johan to separate out the leftover once a day meds from the as needed meds to make things easier for the care workers (and for him when he’s tired). I have three different medications that are small, round, white tablets so it’s easy to confuse them.
Explanation for sleep below: I had 5 sleep sessions (with short antinaps in them for medication and pad changes, which was taken out of the duration), 4 over 18 hours and the other just over 9 hours. Technically my longest sleep was from Sunday afternoon to Monday morning at 19 hours 32 minutes, but only 10 hours 5 minutes of that was on the Monday morning and my tracker splits at midnight between Sunday and Monday.
Overall mood – Good, with a meh on Friday morning as I felt guilty that Johan saw how upset I get about being left alone.
Longest sleep – 19 hours 3 minutes from Friday afternoon to Saturday afternoon (59% deep sleep)
Clothes changed – 1 (Enthusiastic Member of the Orange Boy Fan Club sweatshirt)
Wipe wash – 1
Water wash – 0
Hair wash – 0
Books read – 1 (More Operation Hail Storm)
TV watched – Champions League Cup final. Liverpool lost.
YouTube videos watched – Tom Scott, Mr Puzzle, Jessica Out Of The Closet (including live stream of Jessica)
Streams watched – Rockhopper Chick Cam at Edinburgh Zoo
Music listened to – Rainbows and Unicorns then a Google Play Music radio based on that.
Podcasts listened to – Welcome to Night Vale (Episodes 21 – 30)
Blog posts written – 1
Penguins cuddled – Mostly Nicky, Phoebe and Poseidon 🐧🐧🐧
Johan hand holds – Demanded and receieved
Johan hugs – 0
Time on Twitter – 6 hours 14 minutes (average 53 minutes a day)
Time on Reddit – 14 hours 42 minutes (average 2 hours 6 minutes a day)
Time on Facebook – 11 minutes (average 1 minute a day)
In case it isn’t obvious, I’m really struggling with Facebook right now. I’m only going on if I get an important notification.
I’ve been reading more blogs again. I need to go through my reader and sort out what I’m still wanting to read, and add new ones.
I spent 4 hours 17 minutes on my email program. Most of that was due to the GDPR spam that I deleted from my inbox. It’s been a lot quieter since Friday.
Caught up with adding the latest care calls to my carer spreadsheet. I have a lot of different care workers, including 3 new ones this week, and a couple of others I’d only met once or twice before. So far this year I’ve had 42 different care workers, which is a lot. One call a day is a double up but still.
Games played – 4
Animal Crossing: Pocket Camp
AC: Pocket Camp Level – 101
Godville Heroine Level – 53 (73% done)
Godville wood for ark – 22.1%
Godville savings – 917 thousand
Cross stitch completed – 3
Most played game – Animal Crossing Pocket Camp (8 hours 31 minutes, average 1 hour 13 minutes a day)
Continued adding stuff to my Animal Crossing spreadsheet. It doesn’t require thinking which is a good thing.
Finished the fishing event. I’m glad I bought the golden rod as without it I would probably not have completed it with how much I was sleeping.
TL;DR: Got enhanced daily living, enhanced mobility PIP until December 2020. We won.
Today was not the nicest day for travel, being cold and snowing. Hot water bottle and hand warmer were much needed, along with winter weather stuff. Got there 15 minutes early, which is good going for us, especially as Johan had to push me (the hardest bit being unavoidable no matter how we travelled). When we arrived they were reviewing the evidence, which Johan had read and I kinda knew the existence of (being too ill to read most of it myself). Got called in not long after.
The tribunal itself went fine. They asked that I answered the questions if possible, but Johan could take over if needed and was given time to add to my answers. They were only concentrating on a couple of descriptors as we provided so much evidence. Some questioning about my DLA history as that wasn’t provided by the DWP (and Johan didn’t know it all as some was before he knew me). Mostly questions on mobility and using my shower chair/washing. I was struggling near the end but they asked Johan to add anything he wanted and then we were asked to leave while they discussed it (though I told Johan I was boaty and then had to describe what that meant for the record – dizzy and like everything is moving). The tribunal panel were nice and understanding, which probably helped me be able to contribute so much.
During the wait I had my eye mask on while Johan was going on about how it was the hardest bit. Not long after we were called in and told the decision. Being told that they only changed the points in a few of the descriptors because they stopped at 12 was pretty awesome. I’m now on enhanced daily living and enhanced mobility, going from standard daily living and no mobility, so it’s a big change. My reassessment date is December 2020, which is fair enough as my condition has changed quite a bit in the last few years (mostly for the worse, but I’m optimistic that’ll it be better soon).
Getting home was interesting. The snow was heavier and was sticking more, which is not ideal for wheelchairs. The hardest part was the ramp going from the street up to the ramp to the front door – it’s hard on a good day because it’s so steep, and with no grip it’s horrendous. I ended up helping to push to get through the worst of it, as without the wheels were just slipping and we were making no progress. I was scared we’d have to contact someone to help (no idea who), but between us we made it until Johan could manage by himself again.
Once home, back in bed and mostly sorted, Johan read the tribunal report to me. A couple of the changed descriptors still aren’t entirely accurate, but I got enough points so don’t care. I’ll need to eat and calm down before I can rest as I’m running on adrenaline, but I’m very happy.
I know I’m going to pay for today soon (especially the wheelchair pushing) but it was definitely worth it. It would have been much harder for me mentally to not be there, so worth any payback I get. Hopefully it’ll stop the nightmares that I’ll get it all taken away at least for a bit.
Yesterday I went into hospital to have my teeth sorted under a general anaesthetic. Considering I have severe ME, it went about as well as it could have.
The ambulance with the stretcher was late, but we were expecting that and I was second on the list because we knew I’d not be getting in for 8am (I probably would have been first otherwise). The journey was horrible but I listened to music to help cope with the noise (along with wearing my earplugs and ear defenders) and used Google maps to see how long it would be. Got there and was put in a side room which was good.
Not too much later we went through what was going to happen, consent and stuff. Johan filled in the forms and signed for me (I gave verbal consent for him to do everything) and they took my blood pressure and heart rate. Blood pressure was normal (higher than my normal but I was anxious) but my heart rate was bouncing around, but only between 99 and 120ish bpm so not too bad for me. When I say my heart is doing funky dances, that’s part of what I mean. Once I told them that was normal for me they accepted it.
I’d made up a personal information sheet that was two sides of A4, that we laminated as we could only find A3 lamination sheets and I was also making a communication board so put them in the same sheet 😛 I based it off a friend’s version and I think it really helped them understand me. It explained my normal difficulties, medication, what to do if certain things happened (if I go nonverbal, if I have a panic attack, etc.) and what not to do, especially sitting me up (which is normal procedure). It’s generic enough that it’ll be useful as a normal emergency sheet, and will just need updating if anything changes.
After that stuff we had a little wait, then got told off for my chocolate consumption (I think keeping my weight up is more important, and the acid reflux is probably more damaging in the long run). Johan struggled to get compression socks on me (I ended up doing one and hurt my hands, he managed the second after being shown how) and I had a gown put over my pyjamas and it was off to theatre. I took Po with me as I knew having a penguin there when I woke up would help. I also wore my sunglasses as it was really bright.
In theatre it was the usual confirmation of who I was, and then I was asked if the signature on the consent forms was mine. When I said no the guy jumped backwards and some of the other staff laughed. Then he confirmed that it was Johan’s signature and that we both knew what was happening, the risks and stuff. Next everyone but the anaesthetists left and one of them started looking for a vein in my hand. Because I had already hurt my hands earlier, the tapping on the back of my hand was absolute agony. I think it hurt more than the canulla being inserted and that’s bad enough. Fluids and meds were given, then they gave me some oxygen, then they told me they were putting me to sleep and injected a stinging liquid. Not too much later I was asleep.
Waking up I was very groggy. I remember feeling Po under my hand which helped with my anxiety, then being very shivery and then had warmed blankets put on me. That felt really nice as I became aware of it. Johan came in, and I asked for my eye mask because it was too bright with just my sunglasses. He was talking to me but I can’t really remember anything of it. They removed two teeth and filled 4 more, mostly at the back. I’m down to two wisdom teeth now.
Got wheeled back to the side room (the movement was horrendous) and the light was turned off which helped. Was still very fuzzy and I think I drifted off to sleep a few times. Was asked about pain, said my face was okay (it hurt but not too much) but my body was really bad. Was told I could have my normal tramadol and a drink and that helped. After a bit more time I was able to swap to my sunglasses and talk to Johan a bit. Asked about my teeth pain again and it was okay, so they called for the ambulance and they turned up.
The journey home was not exactly fun. They kept the main lights off in the back of the ambulance, and I listened to music with my ear plugs and defenders on. I also watched the map so I could tell how long it would be before we got home, which helped as I don’t like not knowing what is going on. When it said 1 minute from home I started feeling really nauseous, but was able to cope knowing it wouldn’t be long.
Ambulance guys got me back into my room, and Johan hoisted me back into bed (the hoist sling had stayed under me the entire time, which isn’t too bad if I’m not sitting on it). One of the ambulance guys asked us to let them know when I next need them so they can take the day off (the path and ramp from the road to our flat is very steep- everyone who has to push me up it complains) then they left. Johan gave me some more water and some jelly which helped me be a bit less hungry and thirsty, then some cyclizine a little later as the nausea wasn’t improving.
I spent the rest of the day on my tablet as so long as I didn’t move, I didn’t feel too bad. The worst pain was in the hand the canulla had been in, which I took as a good sign. It also seems my contact allergy to adhesives has improved, as the sticker around the canulla was fine (unlike last time where it was a horrible itchy rash). The ECG pads were still a bit red and itchy but not too bad.
I woke up a few times during the night, and my main problem was thirst as I was too tired to call Johan and as I’m not allowed to suck I didn’t have my hydrant (or can be used without sucking but we were worried I’d forget if tired, and I really want to avoid dry socket if possible). I was able to ask Johan eventually for some water (plus electrolyte tablet as the salts are good). He gave me my meds and once they kicked in my pain levels were back to Danni normal, which is still really bad pain but bearable.
Ended up sleeping again for a bit, then woke up as the carer came in and got annoyed that she put the washing machine on as it was too noisy. (To be fair to her, if the doors are closed it usually doesn’t disturb me too much, and she hadn’t been told not to put it on). Put my ear defenders and sunglasses on (my eye mask has ear muffs but they don’t block as much noise as my ear defenders) and that helped. I didn’t feel up to having any personal care done and wasn’t allowed to have my teeth brushed yet, so just said a few words and I’ll see her this evening.
We had our new dryer delivered this morning, after the guy who came out to do the repair due to the big fire risk thing said it would still be a fire risk after. As I wasn’t feeling too bad once I’d woken up a bit and stuff I told Johan he could test it, and though it’s pretty noisy for the first couple of minutes it then goes really quiet (to the point where the wind was disturbing me more). As I can put ear plugs in and ear defenders on we’ll be able to use it so long as I’m not in payback or relapse. It has a wetness sensor and seems to work faster than our old one, so I’m looking forward to soft warm towels and pyjamas again.
Other than a bit more tired I’m not too bad right now. Have been eating jelly, soup and milkybar desserts, and finally tried out my new cup which is designed for use lying down, has two handles and needs less tilting. I can manage it myself if I’m passed it so I’m really happy with it. Once I’m over the worst of this recovery I think I’ll be using it for hot drinks as I don’t really like using a straw for them. Until then it’ll be sugar free juice with electrolyte tablets.
I read that tomorrow will be the worst day as that’s when the swelling kicks in, and is also when my payback tends to start. I’m hoping it’s not too bad, but need to ask Johan to get some ice packs in the freezer in preparation. I’m also getting rather tired now so might nap again.