Category: Real Life

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.

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 🙂

Danni in TGI Fridays in Newcastle
Danni in TGI Fridays in Newcastle
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 🙂

Danni

Spoonie Raiding

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft

Was talking to Johan today about how the last full progression raid I did (Firelands in World of Warcraft Cataclysm) I didn’t do too badly, but then got payback for ages so it meant I’ve never tried again (I’m also much more ill than I was then). During it I came up with the idea of Spoonie raiding, and what that would involve.

No longer than 15 minutes before a break.
No longer than 90 minutes a raid.
One raid a week.

Johan pointed out that it wouldn’t work at all for Mythic – Mythic Archimonde takes hundreds of attempts, and we’d fit in about 4 a raid 😛 I said we might get it down if we started now and carried on until the end of Legion (the next expansion).

Obviously this was never a serious suggestion, and even with such a short schedule it would be too much for me (I’m only just occasionally managing heroic dungeons, and we massively outgear them now so it doesn’t matter too much if I lose concentration, which happens regularly). I know there are spoonies that do raid, depending on their energy and brain fog levels. I wouldn’t be surprised if there were guilds specifically for spoonies (I know there’s at least one for people with social anxiety).

I think I might have to accept that I’m too ill for any kind of scheduled raiding. I’m lucky that I can pay WoW at all, even if it’s from bed. Still, the idea of a Spoonie raid with other people at my levels of brain fog amused me 🙂

Danni

Summer’s Here

Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

And I’m lying in my bed like always. Have had the blind up and the window open a few times though 🙂

My sleeping pattern has been non-existent recently, but I’m hoping to get it fixed soon. Missed the evening carer for over a week by being asleep so not had any big things done. I woke up at 6am today so I’m hoping to manage to stay awake for the evening call, but I’m already getting tired and it’s only early afternoon. Silly body.

The big news I have is I’ve got a date for my hoist installation! It’s being installed the 2nd September. Johan had already planned to go to Insomnia 55 the last weekend in August so we were already planning to have me in the care home, so it’s worked out really well. I’m really excited at the prospect of getting out of bed without worrying about how I’m going to get back in 😛

Johan’s day service thing is going well. He’s really enjoying it, and it’s nice for him to have something to do that’s not looking after me. We’ve not sorted out care for me yet, so I’ve been mostly sleeping while he’s there (cause of broken sleeping pattern, along with needing cyclizine a lot) but they’ll bring him back in an emergency. The new care agency isn’t starting until the end of September now, so hopefully we’ll get things sorted before then, as I’ll need to be reassessed due to having the hoist anyway (most agencies insist on two carers for hoisting).

My ability to cope with sensory stuff is improving, to the point where I’m actually thinking my room is dark sometimes 😛 Have bought a light shade for my ceiling light to see if I can cope with having it on (main problem at the moment is it shining in my eyes above my bed). If not then I’ll get another lamp to put somewhere else in the room to increase the light levels when I can cope with it. Apart from 30 minutes in the morning, my bedroom doesn’t get direct sunlight and is sheltered by trees so it never gets that bright in here even with the blind up (my blind only reduces the light rather than blocking it).

Everyone except me is going on holiday 😛 Sammie went on holiday last week, Johan’s planning on going to Insomnia 55 as I said earlier, and Esther is currently away. I was a tiny bit grumpy about it when I realised, but now I’m looking forward to the chance to have a bath and get out of bed while I’m in the care home, and after I get home getting out of bed and maybe having a shower. It’s weird not having Esther here, but I’m glad she’s had the chance to get away. One day I’ll be well enough to go on holiday myself 🙂

I’ve managed to read a few books the last couple of weeks, which has meant I’ve caught up to where I’m meant to be for reading 50 this year. Mostly children’s books, but a couple of adult ones a well. I’m managing my computer several times a week so I’m going to start planning what I want to do on there when I get on, as sometimes I’m on but not really doing anything and then I kick myself when I’ve come off for not doing what I wanted. World of Warcraft is still my main game, and I’ve been working on reputations in Warlords and pet battles mostly.

I also installed Windows 10 on my computer and a different rom on my tablet. Windows 10 seems to be working well for me, as I mostly use my computer for games and web stuff now and they all work fine. I like the new start menu (finally removed Start 8) and it seems to run faster. My new rom for my tablet is CyanogenMod based, so I’m able to customise it more and it no longer has TouchWiz. Still got to work on it but it’s running faster and I’m on 5.1, which isn’t available officially yet.

Apart from my nausea and digestion issues (which are getting worse) I’ve been mostly stable recently. Still occasionally do too much and end up with payback, but I’ve mostly figured out my limits. The digestion issues are not good though, and I’ve still not managed to see my GP (with Johan being out 3 times a week and me being asleep during the day it’s been hard to arrange). Cyclizine is amazing even if it does put me to sleep, as it means I can at least keep my food down. My portion sizes are decreasing as I get full after less food now, so I’m a bit worried about weight loss (it’s hard to tell when I can’t be weighed, but my bones in my bum and hips are sticking out more). I’m going to buy some meal replacement bars since milkshakes are really not agreeing with me right now.

Otherwise I’ve just been doing normal stuff. Playing silly games on my tablet, bossing Johan around, arguing about wanting to do things for myself 😛 I did get new bodies for Nicky and Penelope (we used penguin magic to transfer them) as their old bodies were dropping bits everywhere. Penguin is now demanding a new body but as they don’t sell his anymore it’s being a bit harder to track one down. I also got a new blue Trabasack to use when I’m on puter or in my wheelchair (which will be happening soon! Yay!). I discovered part of the reason I struggled with being on my computer was the weight of the keyboard, so I bought a lightweight one with purple leds (as it can be dark in here) and it’s making it much easier.