Danni

Wednesday 4th November, 2015Wednesday 4th November, 2015 Danni

I Like Co-op

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

Title has very little to do with this blog post, but I just played the Tavern Brawl with Johan in Hearthstone where we worked together to beat the boss, and it was fun.

I have been awake since 10pm last night. I’ve now been awake over 18 hours so hopefully will be able to sleep soon. This isn’t uncommon after activity so I’m not worried but not sure I’ll be awake for the care call tomorrow morning. We’ll see.

I’m annoyed at Tesco. It’s Guy Fawkes night tomorrow, and as it’s the first in a few years where I can actually go out to see some fireworks I wanted some traditional goodies for the occasion, so sent Johan out to get toffee apples, treacle toffee and parkin. He couldn’t find any of them in Tesco at all, not even a sign that they’d sold out. I know that parkin is a regional cake (common in Yorkshire and Lancashire, so both Johan and I both grew up with it) so I am not too surprised he couldn’t find it, but toffee apples and treacle toffee are both national traditional treats associated with the day, so I can’t understand a massive supermarket not having them. He’s going to hunt in Newcastle tomorrow to see if he can find some there.

I managed to get my computer working again overnight. First issue was the bootloader deciding it didn’t want to exist properly for some reason, and it was so broken it couldn’t even be repaired, so I gave in and reformatted Windows 10. That fixed that issue, but then it wasn’t detecting the second SSD I have where I store all my games and stuff I want to keep (all the important stuff is also backed up online but it would have been annoying having to download it all again). It was showing up in BIOS but not in disk management or My Computer. No idea what caused that or why it persisted through several reboots, but one person online suggested running a memory check and even though it came back with no errors after doing so it was showing up in disk management to be assigned a letter. Makes no logical sense but I’m not complaining now it works.

Next problem was trying to get sound working. I have a Bluetooth adapter my headphones plug into and I just couldn’t figure out why it wasn’t working. I spent a couple of hours trying to figure it out, before realising I needed to pair it to the computer for it to work. I’d been wanting to talk to Sammie but I didn’t manage to sort it until an hour after she’d left for school. Hopefully I’ll catch her soon as talking to her is one of my favourite things in the world. Just need to be on my computer at a reasonable time 😛

The rest of the day I’ve been dopey. I’ve been wanting to sleep since this morning but it just hasn’t happened yet. Had an anxiety attack around midday today and I couldn’t figure out what was causing it, which wasn’t fun. Johan gave me cuddles though and I eventually calmed down. On top that I had the anxiety and panic caused by not knowing what is going on with the care calls so I’m feeling really mentally bleh and not coping with other stuff as well as I was. I did manage to get my bedding changed at the evening care call though, and being hoisted into my chair while it’s being done is much less exhausting and painful for me than changing it in the bed would have been. I’m grateful that’s an option now.

I’m really hoping I’m well enough to watch fireworks tomorrow (I’ll be wearing ear defenders and maybe ear plugs to deal with the noise). I’ve also got Blizzcon to watch this weekend so hopefully the anxiety won’t spoil things too much 🙂

Tuesday 3rd November, 2015Tuesday 3rd November, 2015 Danni

Computer Issues

Computers, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

I can’t remember what exactly I wanted to blog about today, but when I started up my computer to write a blog post and do a food shop, I got a lovely blue screen of death saying my bootloader is broken. Johan is currently sorting me out a repair drive so I can fix it, but it means I’m not able to do a shop in time for delivery tomorrow as it takes forever on my tablet (which I’m using to write this).

Today I get the payback from the outing. Luckily it’s purely just some extra tiredness, so I had a 5 hour nap earlier which will hopefully help (I’m still rather zombified). My arm is still a bit sore from the flu jab but otherwise I’m just at Danni normal levels of pain, nausea and blehness, which I’m used to. Luckily painkillers (or pain reducers as I call them, as they don’t kill pain just make it more bearable) are working so I’m a bit less grumpy than when I first woke up. The cleaner came today and sorted my room out a little bit, which was good.

On Thursday I hope to go outside on the ramp to watch the fireworks, as we should be able to see the official display from there without the crowds or ticket prices. Advantage of being up the hill from the park 🙂 I’m wanting to have toffee apples and some treacle toffee. Maybe also hot chocolate 🙂

I’ve spent a lot of money this month, more than I originally planned. It’s all been on good stuff though, like a hot water dispenser kettle as Johan is scared of normal kettles so I can have hot drinks (he actually made himself a cup of tea earlier!) and a Brita filter jug to see if we can make the water taste better here (I like the local water except from our tap, so we think it’s our piping or tap that’s the issue). It seems to make a tiny difference? The new kettle Johan wasn’t sure about until we got it, but he already really likes it.

I’ve also bought some winter waterproof stuff for my wheelchair- some leg covers that don’t stop me opening the door with my feet (my current leg cosy makes it impossible) and a cape that should be easier to put on than a coat (we’ve also lost my coat which is a bit annoying but this will replace it I hope). Not cheap but disability stuff never is, and I couldn’t find another option in purple that was cheaper so I’m hoping they’ll help.

I’ve also recently got into making loom band bracelets. It’s a lot of fun, and patterns that use a mini loom don’t hurt my hands too much (I can make two of them during a session, and only one that uses the full loom). I spent some of today organising my bags of bands into a container by colour to make it easier to plan what colours I’m using in the future. Johan has set me a challenge to make a loom band belt so I just need to find a decent design and then I’ll be working on that. I’m really happy to have found something I can do as my hands are too silly for crocheting or knitting, which I want to learn. Being able to put it down pretty much when I need to helps as well. As I’m late to the trend all the sets are really cheap which is awesome 🙂

Apologies if there are any extra spaces in the blog post. My tablet puts them in automatically after punctuation but I also add them automatically when typing. I’ve gone through trying to remove them but I may have missed a few. Hopefully tomorrow my computer will be fixed and I’ll be back to blogging on something a bit easier 🙂

Monday 2nd November, 2015 Danni

Home Care Issues

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

At the end of September, the care agency providing my home care changed, as the previous agency lost the contract for not sticking to it. I’d had various issues with it, mostly due to lack of communication (I need to know what’s happening and when or I panic). I hoped this new agency would be better, but unfortunately it’s not been.

The new agency has only just started in this area, and they took on a lot very quickly. Unfortunately that meant they were incredibly disorganised. My care plan is a mess (the care workers struggle to find what they’re meant to do in it), it was missing the communication book for the care workers to write what they’ve done, and they promised to provide me with an email address but haven’t.

That was just the start. They’ve changed the times of some of my calls without informing me, and don’t send rotas so I have no idea who is coming or when. One morning call (written in my care plan as 10am) didn’t turn up until 12.30pm. Then a lot of times the carers just don’t turn up. There was one week where I only actually got 6 out of 14 calls because no-one actually turned up for the call. That is improving a little bit now (it’s been just over a week since the last missed call) but it’s made me very anxious and panicky. There have also been care workers showing up smelling so strongly of perfume or cigarette smoke it immediately makes me feel incredibly ill (the agency are aware that I can’t cope with strong smells and said all care workers are to read the sign on my door, which mentions it but often gets ignored). That’s on top of the problems of not being able to explain what I need every time and getting several different care workers each week, most of whom are new.

Johan hasn’t been able to contact them about any of this as he’s been too anxious, but he did tell his social worker when he had his review. The agency claimed he had been sending the carers away, but that happened twice on one day, due to that care worker smelling so strongly it took over an hour for the smell to dissipate (and Johan found it too strong, so it wasn’t just me). Most of the rest of that week no-one showed up with no explanation.

Physically I’m doing much better, but I’ve been doing a lot worse cognitively, at least partially because not knowing what’s going on with the care workers means I get incredibly anxious twice a day, and often end up having a panic attack, which was rare until this started. I’m now terrified to be left alone if a care worker is going to turn up, as I have no idea if they’ll know what to do and I’m not always able to remember things myself (mentioned in the care plan). I know me being autistic makes things a little more complicated, but just telling me when things change would be a massive improvement. If it weren’t for Johan needing the help I’d just cancel them all until I was able to cope again, but Johan doesn’t feel able to do some things and he shouldn’t have to.

Sunday 1st November, 2015Monday 2nd November, 2015 Danni

I Can Get Out!

Danni, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life

What a difference one piece of equipment and a bit of time can make 😀

A few weeks ago I was still unable to get out of bed, and rather fed up of being stuck there. A bit after my last blog post, the OT got in touch with some hoist slings! They’re not the ones I wanted, but he didn’t want to leave me any longer and has ordered the right ones for me. These don’t have head support, but otherwise are comfortable.

Once the payback from that taxi journey wore off I got Johan to hoist me into my chair. I’ve been hoisted enough times to figure out how the sling goes (after watching the video for this particular sling) and the hoist controls are simple enough, so though it took a bit the first time Johan figured it out. We stayed on the ramp the first time as I was still not really great with movement from the payback, but managed about 10-15 minutes in my chair (for my future reference, that was 23rd September). Next up was the lunar eclipse in the early hours of the 28th September, and I stayed out for about 15 minutes before going back in (I had a slanket on but it was cold :P). I felt better after that go than the first time, so knew I’d go further the next time.

Unfortunately the care agency changed at the end of September, and the anxiety from that meant I didn’t get out again for a little bit (though I did discover that someone can deliver McDonald’s to my flat, which was awesome and yummy). Been having major issues with the new agency but that’s for tomorrow’s blog post I think. About 10pm on the 11th October I felt okay so it was time for a further outing (we went out at night because that’s my best time and there’s less noise and light to worry about). After discovering the shop and the garage were shut, Johan suggested going into Gateshead so we did! Everywhere was shut but as it was the first time I’d been into town since before they built the new Trinity Square it was amazing to see the difference. I particularly liked the shiny metal tyre on an angle (not the official name).

After discovering that I got no real payback other than a bit of extra tiredness, I knew I was okay for further outings. That week I ended up having horrendous toothache, which was as bad as the nerve pain I get in my face occasionally, only lasting hours rather than a couple of minutes. Johan got over his fear and made me an emergency appointment at a local dentist, and my next trip was to see him (on 15th October). He confirmed that the pain was probably the root of my broken tooth dying (I guessed that from Google) and put a temporary filling in, and referred me to the community dentist as they don’t have the facilities to treat me there (not being able to get out of my chair without a hoist). My teeth are a mess (lots of cavities- turns out stomach acid is not meant to live in your mouth :P, and teeth brushing is kinda important for carers to do) but antibiotics and the filling helped with the pain.

Esther had a friend come to visit that weekend, and as I was jealous from Esther, Johan and Cat visiting a cat café in Newcastle while I was recovering from the dentist, on Monday 19th October I went into Gateshead during the day to go to Nandos with Johan and Cat (Esther had work). We also went to a few shops and it was absolutely amazing to be able sitting up (well, as sitting up as I am with my chair fully tilted and reclined) and while out. Cat is absolutely amazing and awesome and I’m so happy to have met her! That was the longest outing yet, being out for 3 1/2 hours and in my chair an hour longer at home. Somehow just got a bit of extra tiredness from it rather than a massive increase in symptoms so I was happy with how I’ve been coping.

October 25th I felt up to going out again, and as it was a Sunday Johan and I went into Gateshead for a roast dinner at Wetherspoons. It confirmed I had a much smaller appetite than before I got so ill, but was very nommy 🙂 We also found some Gatorade, beef jerky and a Charleston Chew in Tesco, which was nice 😀 We discovered the wheelchair space on one of the bus routes is now a lot smaller than it used to be, so the bus journey home wasn’t great but otherwise it went well. We’ll be avoiding that route in the future (luckily there’s a few others we can get).

Today I went into Newcastle for the first time (other than for hospital visits) in three years. Johan pushed me into Gateshead, then we got the Metro into Newcastle. After a bit of exploring and Johan pointing out to me all the new shops and things that had changed, he treated me to a TGI Fridays and it was very nommy! Afterwards we cancelled the care call (which was meant to be at 5pm for some reason) and went to Primark, where I bought a new bra (as I’ve not worn one in over 3 years and my size has changed dramatically), Harry Potter socks, a penguin shirt and pyjamas. Johan got a new coat, socks and a new belt which he’d been desperate for as his jeans were falling down. Johan can’t cope with Primark by himself but he was okay with me there, so it was awesome 😀 There are a few penguin items I’m wanting to investigate more when we’re next there 🙂 We got the Metro back into Gateshead then Johan pushed me back up the hill to our flat, as he apparently wants the exercise and it meant I didn’t have to deal with the movement of a bus.

It’s been an amazing few weeks, and the only downside is I’ve not been doing as well cognitively, which is partially responsible for the lack of blog posts. I want to get back into the habit though, so I’m rejoining NaBloPoMo for the month. Will set it up properly tomorrow, but for now, a photo from TGI Fridays earlier today 🙂

Tuesday 15th September, 2015 Danni

Brain Dump, Payback Edition

Danni, M.E., Physical Disability, Real Life

Wanting to blog but not having the spoons to write a proper post, so going for a brain dump instead.

I have hoists. One in bedroom, one in living room. I don’t have host slings yet. Not been able to contact OT to get them (carer has left messages). Care home was okay. Baths were awesome. Had two. No major problems. Able to manage 2 hours in wheelchair talking to friends. Movement still an issue- taxi home caused payback I’m not over yet.

Was different care home. Original care home not allowed to take social services people now as so bad. They’ve got worse since I was last there and they forgot me. This care home was one I wanted to go in anyway but Johan too scared to phone. Didn’t find out couldn’t go in booked care home until day I due to go in. Duty social worker did good job finding place at new care home for me. Went in next day for just over a week. Had puter. Was good.

Danni now sleep lots. Sleep during day and some of night. Know it’s payback but makes things hard. Now forget important things like how to pay bills. Need stuff doing but too ill. Best time of day is easily hours of morning but no-one able to help me then.

Digestive system still ebil. Still not seen doctor, but hoping to soon. Want to eat without agonising pain. Body says not allowed. Is mean. Also not good at making food stay in stomach instead of mouth after swallowing.

Hoping once payback finished and got hoist slings can work on sitting in wheelchair. Really want to see the lunar eclipse. That would be awesome. Will need to work on coping with movement but can manage short bits okay, so should be able to go on ramp outside.

Want to feel better. Want to not be ill. Glad things aren’t worse but still wish they were better. Still got penguins 🙂