Category: Autism

Danni

Not ME Awareness Day

Autism, Danni, Gaming, Goals, Important Stuff, M.E., Mental Health, Physical Disability, Real Life

I was planning to blog on Sunday, which was ME Awareness Day, but instead because I have ME I slept through it instead. To be honest I’m not entirely sure I would have said anyway – I’ve already said what it’s like to live with Severe ME, and that we need more physiological research. The recent NICE guidelines are a massive improvement over the old ones, but now we need doctors and hospitals to actually listen to them.

I guess I might as well do my update post instead 🙂

First thing: the charity which provides my adaptive controllers, SpecialEffect, was given a BAFTA Special Award. They thoroughly deserve it, having helped so many physically disabled people be able to access games, amongst other things. BAFTA asked the games journalist Laura Kate Dale to write an article about SpecialEffect and what they do, and alongside some amazingly awesome people I was quoted in it. Still can’t quite believe that happened 🙂

Below is mostly a rant, so feel free to skip it if you like. It’s mostly for my future reference. The Too Long; Didn’t Read version is that respite didn’t go well, lots of things happened, and though I’m struggling, I’m making progress on some of my goals.

Last post I mentioned I was going into respite, but didn’t know where. Eventually Izzy contacted Social Services and they found somewhere that would take me. The downside was it was 10 miles away. Izzy booked stretcher patient transport there, which apparently we could always do since I needed it? No-one told us that before. It meant I got there though, and it meant I wasn’t as ill as I could have been on arrival.

The stay in the care home did not go well, though there were a few good days when the right staff were on. The morning Izzy flew to America (I’m now allowed to say she went to the Game Developers’ Conference in San Francisco) she had to phone them at 5am to get them to help me, as I’d not seen anyone for 7 hours. They agreed to hourly checks, and even without them everyone on that floor is meant to be checked on at least every 2 hours, which didn’t happen many nights and some days. Multiple unnecessary bedding changes were needed during the stay, because I didn’t get pad changes when I needed them. And to top it off, I ended up with my first bed sore in nearly a decade, due to having a heavy plate on me I couldn’t move for several hours multiple times, and no alternating air mattress. And not giving me my prescribed painkillers when needed. I was running on adrenaline the entire time, and am still having nightmares about it.

The one big positive of the stay was it was near where Sammie lives, so I got to see her twice (would have been more if she’d not had a cold at the beginning and I was doing better). Those visits helped so much. Izzy also came between the two trips, both to try and improve my care (didn’t work) and to just spend time with me. I’ve got a photo of all three of us together which makes me happy every time I see it 🙂 I also heard the owls at night, which was pretty cool.

Coming home was interesting. Izzy forgot to book the stretcher transport until a few days before I was meant to go home (while she was still in Belgium), and by that point they couldn’t do it. Then she couldn’t get a wheelchair accessible taxi booked either. This meant the only option was public transport. The first 20 minutes or so in my wheelchair I was mostly fighting to remain conscious, but eventually adrenaline kicked in enough I was aware of things and made a request: to go on a train (Metro). This technically added 6 minutes to the journey and an extra change, but reduced how far Izzy had to push me (especially uphill) and meant I got to be on a train going over a bridge, and was able to look at other bridges! That part was worth it, even if I’ve still not recovered completely.

Since getting home it’s been mixed. I crashed, as expected. The home care agency put me on a doubles round without letting us know, and having two extra people in the flat was just too much for me. We also weren’t told who was coming, and they were arriving outside the times agreed with the agency (11am-12pm in the morning, 6pm-7pm in the evening – technically my calls are at half past but with 30 minutes leeway either side). It got to the point I was panicking just thinking about it, so Izzy agreed to cancel them for a week, and also told them when they came back to only have one care worker come in.

Then I had my B12 injection, and there were two nurses for that. And because Izzy was working I had to answer all their questions by myself. Necessary (it’s started to kick in now and I can actually be awake for a few hours a day, like now) but not great in a crash. I was due to get it while in the care home, and they said they’d sort it out, but obviously they didn’t.

Then the nurses insisted I needed my mattress replacing, which was true as a pipe was broken (though the foam below is also pressure relieving, so it wasn’t an emergency). They wanted to do it the same or next day as my injection, but since there was no way I was going to be well enough we managed to postpone it until the next week, which I’m very grateful for. It meant a night in the living room and being in there with Izzy while she worked for a day. Was lovely to spend time with her, but one of her work machines is way too loud for me to be in there while it’s on. I’m glad I have a working mattress again, but I wish there was a medium pressure setting as high is a bit too high, but low is a bit too low. It’s better than none though, and it does mean I’m sleeping a bit better.

Since then I’ve been mostly trying to recover from everything, and get used to the new care workers. Having only one in definitely helps, though I don’t trust them yet. I’ve been feeling really guilty because I know how lucky I am to be getting care at all, and I feel I should be coping better. Izzy tells me I’m a silly sausage. Most of the time I like being autistic, but I do wish I were more able to cope with change and anxiety. It’s exhausting.

Izzy’s trips both went well. She really enjoyed the work event, though failed to get me any peppermint Lifesavers (not helped by having a headache the one day she had free to explore). I helped by tracking her planes and telling her where she needed to go at each airport, especially for the really tight connections. Her cruise was apparently fantastic, and she met friends and went to the zoo and saw penguins, amongst other things. I unfortunately was too ill for a video call while she was at the zoo, but the photos and videos were great. She did a bit better on presents, getting me a soft toy penguin and stroopwaffels.

A gentoo penguin. It is in the water, with the top of its head visible above the waterline, and most of its body and wings below. It is looking directly at the camera. It has a black head with a white band around its eyes, and a beak that is mostly yellow with a black line on top. The body and upper wings are black, and the belly and under wings are white.
Gentoo Penguin in Rotterdam Zoo. Taken by Izzy Brennand

Apart from the first couple of weeks where I mostly slept, I’ve been well enough for some entertainment. I’m slowly getting back into watching my favourite Twitch streams, when the games are ones that I can deal with. I’m now up to 10 books read, so I should probably think about upping my goal there. I’ve completed three video games so far (A Little To The Left, Frog Detective: The Entire Mystery and Unpacking) so I’m really happy with that. I watched Mary Poppins Returns and Miss Peregrine’s Home for Peculiar Children while in the care home, so I’m doing well on that front too. I’ve also watched the first two episodes of Good Omens, though for some reason TV shows are still really difficult to follow. I’ll figure that out at some point, when my brain is doing better. I’m really happy I’ve been able to do as much as I have, especially since I’m still not able to move as much as I’d like.

I know I will get there eventually. I’m hoping my home care situation will improve (I’ve been offered the chance to move companies, which I’m unsure about right now but if things don’t improve with this one soon will take up). Being at home is much better than not. Izzy’s being incredibly supportive and understanding, and helping me when I’ve had nightmares, anxiety and panic attacks. I’m still able to do things and I’m even on my computer to write this, which is so much easier than on my tablet. It’ll be okay 🙂

Danni

Dysautonomia Sucks

Autism, Danni, M.E., Mental Health, Penguins!, Physical Disability, Rant, Real Life

A rant, then an update.

It’s becoming more obvious to me that dysautonomia (dysfunction of the autonomic nervous system) is causing the worst of my symptoms right now. Which is a problem, as that’s things like heart rate, blood pressure, breathing, digestion, urinating, and everything else the body does without thinking about them. POTS (postural orthostatic tachycardia syndrome) is one form of dysautonomia, but ME can cause others.

The main ones causing me bother are heart rate and blood pressure (making me super dizzy and unable to sit up, amongst other things) and digestion. The first I’m used to, as it’s one of the reasons I’ve been bedbound so long. The second one has recently got worse, and I’m not happy about it. I’m also having issues with breathlessness and bladder stuff, but they’re manageable.

So digestion. About a month ago my body decided that solid food was just gonna hang out in my stomach for more than a day. Which I know because sometimes it comes up and reminds me it’s not moved on to my intestines yet. I’ve had reflux and regurgitation issues as long as I can remember (one of my earliest memories is bringing up milk and apple while in nursery, so I was 3 or 4), so I’m used to it. I’m not used to bringing up identifiable bits of chicken 37 hours after eating it, or rice 26 hours after doing so. 10-12 hours is my normal since getting ME.

I’ve had it before, and previously I’d give my stomach a bit of a break by swapping to liquid foods for a few days, and that would be enough to sort it. It’s also previously only happened when my ME has been really bad, so I’d normally be struggling to chew as well so liquids helped there too. I figured I just didn’t have the energy to digest properly, and once I came out of that bad period it resolved itself.

This time, my ME isn’t actually that bad. Chewing isn’t difficult. I’m able to do basic self care tasks like wipe my face and help with things like changing my top. I can even use cutlery every few days. I have enough energy to watch films and read books. In those ways, I’m doing pretty good for me. But I can’t digest solid food properly.

I swapped to liquid and dissolvable foods, following what my dietician told me years ago when chewing was impossible, and it did help. I was only bringing them up for 12-14 hours after eating, which isn’t amazing but I’ll take it. I’ve also discovered the combination of soup and milkshake is not one I like, especially mixed with stomach acid, so I really need to leave at least 14 hours between them. Rusks go with both, and have the advantage of being solid enough to feel like I’ve eaten something, but pretty much liquid by the time I’m swallowing it. I’ve eaten a lot of rusks.

Every few days, I’d try a bit of rice or banana to see if it was getting better. And until last week, it wasn’t, so I went back to the liquid foods. Then I again tried rice, and I stopped bringing it up after about 12 hours. Since then I’ve had a few days where I’ve been okay with what I’ve eaten, and others where I’ve needed my antiemetic to keep it down and it’s still coming up the next day. I think it’s getting better but slower than I’d like, and I’m mostly only having one meal a day with snacks which isn’t ideal but better than nothing.

As for what’s wrong, we suspect I might have something like gastroparesis (partial paralysis of the stomach), which is not uncommon among those with my combination of stuff (especially hypermobility and dysautonomia). I’m too ill to get tested though, and it’s not yet serious enough to make us worried, as I am still able to eat, even if it’s not necessarily what I want. I’m sure it’ll resolve itself like it has done previously. My IBS continues to be a pain, but it’s my normal so that’s also reassuring.

I do want to know why I still get hungry while my stomach is full though. That one I can’t figure out. Good for making sure I still eat, bad for my nausea and reflux.

</end of rant>

Other than that, I’m mostly doing okay. I’ve already read 7 books, so I suspect I’ll be upping that goal soon. I’ve watched a couple of films, and have started raising the back of the bed in the hopes of getting back to sitting up, though I overdid it one day and got payback. I’ve also been doing some planning.

Izzy’s leaving the country this month. Twice. A few months ago she booked a cruise to northern Europe with some friends for her annual holiday/break from looking after me. That starts on the 30th March, so I was already updating my care home instruction book and sorting things out for that. Then last month she got asked to go to the USA for a work trip. This is a massive opportunity for her, so we said yes. This event starts on the 19th March.

We get 4 weeks of respite a year, though it turns out it’s not January to January like Izzy thought, but July to July, which meant we only had 15 days left. Social services have been very good and given us the extra we need as a one off, which we’re very grateful for. It’ll be the only time I go this year, so that’s fine.

Izzy will be home the week between the two trips, but I’m not going to be well enough to travel twice in such a short space of time so I’ll just stay at the care home until she’s home from the cruise. Which one? We don’t know yet.

All the ones with nursing care I’ve previously stayed in near here, and the others within easy travel distance, can’t take me. Mostly because they have no room or aren’t doing respite right now, one because they think they can’t meet my needs which is better to know beforehand but frustrating. Izzy’s now trying ones that are further away and we’re accepting I’m going to be more ill. I’m meant to be going in on Friday so there’s really not much time (Izzy has been trying to sort this out for the last couple of weeks, so it’s not her fault).

Am I well enough to travel? Nope. We know ways to mitigate the worst symptoms, and luckily unlike when I go to hospital I don’t need to be able to communicate clearly at the other end (we do warn them) so I can mostly shut off and just try and recover. Going into respite last year it took about 3 months to recover once I got home, but hopefully because my ME symptoms aren’t quite as bad (even if my dysautonomia is worse) it won’t take that long this time. Care homes are not a good place for me but Izzy being unable to continue looking after me would be worse. The extra week and a bit for the work trip won’t make that much of a difference.

Izzy has requested I don’t say exactly what her work trip is, but there’s no way we’d have been able to afford it. Luckily we’re not paying 😛 To help, her boss has agreed that as me going into respite is essential for Izzy to go, the day I go in counts as a work day. If she’d not been going on the work trip, I’d have gone in on a day she’s already requested off as holiday before her cruise, so this is cool and fair. Hopefully she gets a lot out of the work trip, and that more people will know about Arcade Paradise VR (the reason she’s going). I’ve demanded she brings home some peppermint Lifesavers, since I remember really liking them as a kid but they’re too expensive to buy here. I also want pictures of San Francisco and planes.

The cruise is going to be fun. Same friends and cruise ship as she went on last year, but another friend in the same group has been convinced to go. Last time it was to the Norwegian Fjords, this time is northern Europe (Germany, the Netherlands, Belgium). I’ve been involved in the planning, have been promised lots of photos, and a trip to the zoo to see penguins (and meet another online friend who lives nearby) has been organised. I’m mostly hoping I’m well enough to video call while they’re at the zoo so I can see the penguins, but if not Izzy is going to film them for me. I’ve also told her to try a fresh stroopwaffel.

To add to my anxiety over not knowing what care home I’m going to stay in, my home care is all messed up right now. Previously I had a stable team of 3 amazing care workers, but two of them have left in the last month, and the third only does Tuesdays (and has taken this week off). I have been asking who is meant to be doing my calls, but it’s been changing on the day and we’re not getting told this. They’ve also been changing the times of the calls without letting us know, so I keep panicking. I’m hoping it’ll be more stable when I come home again, but we’ll see.

The combination of everything means I’ve been struggling to sleep until I basically crash. I’m also both drinking and weeing more (caused by adrenaline), meaning Izzy’s being woken up more often to deal with that. Once I know what’s going on it’ll be fine, I just need to get through this period. Being Autistic is mostly great when things are going well, but I really struggle with uncertainty and change, which is what’s currently happening.

It has been fun planning for Izzy’s trips though. When I couldn’t sleep one night she gave me the job of finding her a new suitcase as she gets one checked bag for the work trip and her current one is noisy and awkward to pull. I gave her multiple options and she decided to go for the biggest that met the size requirements, not realising it’s huge. It’s purple and lightweight though, so will be good. Just need to figure out where we’ll be storing it when she gets home again. We also found out American Airlines and Alaska Airlines allow huge cubes that would be easy to transport a human in, if it weren’t for the 27 kg weight limit.

What I do in the care home depends on how well I am. I’m hoping I have decent enough wifi or 4G so I can watch stuff, and I’m taking my Steam Deck and adapted controllers so I can play games if I’m up to it. Over the next couple of days I’m choosing clothes and downloading games and stuff to watch in case the connection isn’t great. I’ve already updated my care plan/instruction book (there’s only one extra section to clarify something). If there’s a TV I’ll take my Chromecast, if there isn’t I might take one depending on how difficult it is. There’s also F1 to watch if I get a good enough signal to stream it.

If I’m not well enough for any of that, Reddit exists for when I’m conscious, and adrenaline has a massive effect. I’ll also take my galaxy projector to watch if I can’t brain at all. Worst case scenario is I sleep and rest a lot, and I can do that in any bed if I’m in a room by myself, which I will be. I doubt I’ll be well enough for visitors but I’ll let local people know if I happen to be.

How much I’ll be able to talk to Izzy (probably via WhatsApp) we’re unsure about right now. Definitely not while flying, maybe not while working or partying (apparently that’s also work?) in the US, but probably at the airports, in the hotel, and when just being a tourist. When she’s in the UK it’ll be similar to our normal when I can’t speak, and when she’s on the cruise we can talk when she’s in port, but only on sea days if she buys WiFi which we’ll try to avoid (she caved last time).

It is very weird to not talk to her at all for a day. Since we got married that’s happened twice – once when she was in hospital without her phone, and the first sea day on her cruise last year. If my sleep is all over the place it might be asynchronous, but that’s one of the benefits of using a messaging app.

Penguins are still good though. Floof (the baby little blue fairy penguin I saw hatch on a New Zealand webcam stream) grew up and left the nest, so I’m now watching another young penguin go through a molt in the same colony. I’ve also been watching the burrow cam of some Australian fairy penguins, where there’s two chicks going through their first molt. I love that I can watch them from bed on the other side of the world.

If I’m awake this (Tuesday) evening I’m planning to watch the Barbie film with Izzy. Hopefully I’ll also have more of a clue with what’s going on by then too. Until then I’ll keep distracting myself with penguins and looking up all the things Izzy will be too busy to do in San Francisco next week.

Danni

Things Feel Weird

Autism, Computers, Danni, Gaming, Loom Bands, M.E., Mental Health, Physical Disability, Real Life

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.

Danni

Self Isolation Update

Autism, Computers, Danni, Gaming, M.E., Physical Disability, Real Life

So it didn’t take long after my last post for things to change. Johan’s races were cancelled, and we decided that putting me in a care home was not a good idea considering it would increase the risks to me and the other residents. Johan is also now working from home, as is everyone else in the office.

Johan still took the days booked off as holiday last week, which was Wednesday and Friday. On Wednesday we spent time together in my room, and they opened my curtain and window for me so I could get some fresh air (I originally wanted to go onto the ramp but we decided that wasn’t the best plan). Unfortunately I forgot to ask to have the curtain put up again, and the extra light in my bedroom caused me to feel horrendous over the weekend. It’s back up and I’m doing a bit better now.

Friday was originally meant to be Johan goes to Kielder day. Instead, it was Johan plays Doom Eternal day. I did get to see them occasionally, but mostly I heard lots of clicky noises from the living room 😛 At some point we want to play the board game Pandemic, as I’ve had it for ages but not opened it yet.

Johan working from home is weird. Having them in the living room all day but not being able to just bug them about little things is weird, especially as they’re usually in a voice or video chat with colleagues so I can’t just yell through. We’re using the same system as when they were in the office, which is using WhatsApp for non important stuff (like funny pictures or tweets I find) and Google Hangouts for urgent stuff (I need some care doing). If it’s super duper important, I’ll yell anyway as the rest of the team knows that Johan is my carer, but hopefully it won’t come to that. (If I can’t yell, then I can use the Google Nest Minis to broadcast a message into the living room, which is also part of my wake up Johan plan on a night time.)

At the moment we still have the care workers still coming in. On top of the normal hand washing and gloves, they’re also wearing aprons now. We’ve told the agency that if/when they start having staffing problems, just let us know and they can cut our calls as Johan is here. It will make things harder for us but a lot of the clients have no-one so they’ll need to prioritise. We’re also considering if it might be safest to cancel the calls anyway, to reduce the chance of me catching the virus from them. We’ll need to check with the council for how that will work with direct payments but we’re not there yet.

Sammie is happy that there’s no school and her exams are cancelled. She was really stressed out about her GCSEs and I was getting worried about her. If her teacher’s assessment is close to her predicted grades she’s got no problems when it comes to doing the college course she’s interested in. We don’t know if her school will be providing any work as they’ve already done the curriculum and were just revising and getting prepared for the exams, but if not then she’s got projects she wants to work on. We’re also playing Minecraft together when we get the chance, and I believe she’s got an island to develop for her animal friends.

The hardest part of being in self isolation is that I won’t get to see Sammie in person for the foreseeable future. We’ll be video chatting as normal, but it’s not the same. This is especially hard as the last time she came over I was pretty ill and we couldn’t have any hugs. I’m also no longer having hugs or hand holds with Johan, and we’re reducing physical contact to the minimum. We go on voice chat when I’m on my puter and they’re not working so we can chat without being in the same room.

Johan is still going out for prescriptions and food, but otherwise is staying in. We did manage to get some baby wipes from Aldi, and I found an unopened bottle of alcohol based hand sanitiser that has technically expired but should still be okay according to what I’ve read online, so I’m now using that.

One of the reasons we’re being so strict about physical contact with me is that the NICE guidelines for critical care with COVID-19 came out. They will be using the Clinical Frailty Scale (pdf) to help inform when critical care is appropriate, as for those with a score of five or higher “there is uncertainty regarding the likely benefit of critical care organ support”. My score is seven or severely frail . Now this doesn’t mean that if I need critical care I definitely won’t get it, but as doctors already massively underestimate my quality of life (I’ve had many that don’t believe me when I say I’m not depressed among other things) and there is likely to be a shortage of ventilators, there’s a good chance that if I get that ill, I’ll be placed on palliative care instead.

As well as trying to avoid me getting ill at all, I’ll also be updating my emergency information sheet to state I want all life saving measures to be taken if required, and make sure that those who might be asked know my wishes. I still think the main risk is less the virus itself and it making my ME worse, as I’ve ended up in hospital before when unable to swallow and it would be even harder now. Unfortunately a couple of online friends have already come down with suspected COVID-19, one of whom is still in hospital. I really hope they’ll be okay. It’s so important for people to stay at home unless necessary, but some people haven’t got that yet.

So on to better stuff. Other than the payback from sensory overload caused by not having my curtain up for a couple of days, I’ve been doing pretty well for me. Lots of computer time, catching up with emails, chatting to Sammie and Johan. I’ve also been looking at the positives that are coming out of this. Everything from the mutual aid groups, people putting rainbows in their windows for kids to spot when they’re out on walks, individuals helping out those in need, and even companies giving free drinks to those who have to work.

For this week, I’m hoping to play more World of Warcraft and Minecraft, maybe read a book, and possibly watch the Steven Universe film. I’m also planning on lots of sleep and rest to keep myself as well as possible, doing my physiotherapy, and chatting to Sammie and Johan. I’ll be on Twitter so I can see penguin and cat pictures and videos. I’m going to set up a routine based around Johan working, especially since I seem to be awake during the day most of the time at the moment. Things may be uncertain right now, but there is still good out there.

Danni

Day 22 – Clean Hair

2019, Autism, Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

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.