Danni

Monday 14th July, 2014 Danni

Wow…

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

I was not expecting as many people to see my previous blog post (either here or on Tumblr) as actually did. I now have about three times the followers on Tumblr as I did before it, which is kinda scary.

I’m working on communicating better with my main care worker. Some things are a bit better for it, others I still need to figure out. I’m not sure if I’ll be showing her the post or not (I want Johan’s opinion but he’s too meowy to give it at the moment). The main issue will be there though even if it gets better with one person.

How bad I communicate became even more obvious when I had a new care worker this week. She’s nice, but there’s something about her that makes me not want her to be near me and Johan not want her to be in the flat. Since she’s meant to be providing my personal care, that’s a problem. I’m going to have to ask the agency if they can send someone else instead (my main care worker now has Sunday’s off, which I’ve been telling her to get back for months now). If I can’t ask myself my main care worker has said she’ll speak to them for me. It would be easier if I knew exactly why I’m having trouble with her, but I don’t. She’s just not a good fit.

Yesterday I had penguins imprinted on my legs from my knee high penguin socks. I also had a really sore band where one of them had been digging in. I never used to have this problem with socks but I do now. Having penguins on my legs is cool but I don’t think it does them much good (and they’re itchy and a bit sore). I think I might need to look into some socks that are less tight, though as my legs are rather skinny (from disuse mostly) I don’t know how easy that’ll be. Ones without seams will at least prevent it digging in there.

I’ve been getting a bit frustrated by being stuck in bed. I’ve still not got back to where I was before I was in the care home, and I’m having to be careful about sitting up (though I do try to sit up at least once a day, in an attempt to convince my body that it’s not a bad thing). My nausea levels have been pretty bad and the cyclizine has been messing up my sleeping patterns. This doesn’t help with trying to plan my days, or even working out if there’s a better time for the care calls.

I finally got around to putting my medication in my pill box (one with separate boxes for each day of the week, and five slots in each for meds- four for regular medication and one for as needed). We’ve discovered that most days I don’t take all my medication because I’m not awake enough- I’ve set it so I take domperidone (to be taken before food three times a day) with the first three lots of tramadol, but some days I only have two. I also ended up basically skipping Friday because of an extra long sleep on Thursday. The good thing is it did let us know in good time that I needed more medication so Johan was able to order them before I ran out completely (due to the doctors being closed when he tried to order them the first time I would have run out Sunday evening if I’d taken every dose of tramadol, but by that point I had at least four extra doses so it was fine and he’ll pick them up today).

One thing I think I forgot to mention in the update post is I’ve finally been approved for the hoist! I’ll be getting a ceiling track hoist in both the bedroom and the living room, as well as a tilt in space shower chair. The hoist will be at least August before installation, and Johan has quite a bit of work to do in the living room beforehand, but he’ll get there. I am really excited by it as it would mean I could get out of bed even if I’m not well enough to transfer independently, which would be really good for me.

I’ve been playing a bit of Hearthstone, a bit of Minecraft, a bit of Long Live the Queen, and some games on my tablet like Ninja Chicken Multiplayer Race and Pocket Legends. No idea what I’m doing on the tablet games but they’re a good distraction. Also managed to read the second Young Wizards book today when it became obvious sleep wasn’t happening, and I liked it even better than the first. I want to read the third now but I have to be careful not to try and read too much at once as it’s so easy to overdo it (and one book every few days is enough for me right now).

I watched the World Cup final, supporting Germany (I’m quarter German). They deserved their win, but I got really worried by the amount of head injuries during the entire tournament. There were a lot of times where I thought they really shouldn’t have continued playing, as some of the players looked more out of it than I normally do (which is saying a lot). It was fun to watch though, and nice to support a team. Johan has been having fun watching it, and I’m trying to convince him to support Liverpool in the premier league (they’re my team because I’m a Scouser :P).

Had a few problems with people trying to break into my blog last night. It didn’t help that for some reason the security plugin had stopped working properly and wasn’t blocking those who were trying to brute force. Johan was clever though and managed to fix it. I found out about it because I was getting the emails for each attempt- I think there were over 25,000 by the end of it, including the 5,000 that Johan just deleted from the mail queue. It wasn’t fun but sorted now. I’m so glad Johan is able to do server stuff as my brain isn’t good enough to do more than the very basics now (I accidentally dropped a table instead of deleting a row in one in mysql a few days ago- I really need to install phpmyadmin so I don’t mix my commands up again!).

I should probably sleep soon as I’ve been awake since last night. I’m hoping everyone is as okay as they can be, and I’m just glad I’m well enough to do some stuff, even if I’d like to do more 🙂

Friday 11th July, 2014Friday 11th July, 2014 Danni

Gah, Communication

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

(Wrote this on Tumblr yesterday. Figured it would also work here.)

Trying to explain my communication difficulties (to care workers, social workers and similar) when I’m verbal is really hard.

They assume that because I can speak (most of the time) I don’t have communication problems. Some will accept that I also can’t use the phone, but beyond that think I’m okay. Except I’m not.

I really struggle to ask for stuff. There’s a few reasons for this. Sometimes I forget what it is I need. Sometimes I know but can’t figure out how to ask for it (may have forgotten words, or just can’t get them out). Sometimes I can ask, but can’t explain the details. It means I’m not getting what I need done.

I’ve tried mentioning the obvious ones, like don’t ask open questions. Yet they still are asked, and no amount of asking them will let me answer them other than with something just to get them to stop (such as no for “do you need anything?”, when I need something).

Then there are the things being done, but are being done wrong because I can’t explain what I need (example: I need to rest in between tasks like washing and dressing, but as the care workers aren’t used to that and I can’t say I need to rest so I either try and get it done in one go and become more ill, or end up having to abandon it in the middle when I’ve pushed too far and it’s obvious to others).

Ideally, I’d have a list of tasks that I could have done, and then I’d choose from that. With reminders, such as when I’ve forgotten to have my hair washed for 4 months. I have a care plan but it’s not detailed enough, I can’t access it without help, and I’m not well enough to fix it so it’s accessible to me.

Johan has similar issues. Yet during his assessment for care, the social worker put down he has no communication issues because he could speak at the beginning of the assessment (he was barely able to form words by the end and I had to provide the answers to the questions, which was mentioned in the assessment). We both have large vocabularies and sound intelligent when verbal, so there’s the assumption we can’t struggle to communicate.

It’s not helped by there not being a place for autism. I’m under physical disabilities as that’s my biggest need, and they don’t get autism at all (I’ve been told I just have to accept strangers coming to provide personal care and not being told of any changes, which I simply can’t do). There’s currently an argument over whether Johan’s care will be funded by mental health or learning disabilities (in the UK, that means IQ under 75- we’re both good at the stuff IQ tests measure, so don’t count).

Autism isn’t a learning disability, but the kind of help we require is very similar to that needed by those with one, though it might need to be provided slightly differently (I know that’s not the case for all autistics, but it is for us). Autism isn’t a mental illness either, and treating it like one doesn’t work very well in my experience.

I’ve always felt a kind of kinship with those with learning disabilities, like we’re more similar than different. I excelled at academic subjects until life exceeded my ability to cope, yet understood what it was like to struggle to learn other stuff. Many of my friends over the years have had learning disabilities, and I know it’s confused people but they’ve been great friends.

We don’t really mind who provides the funding, so long as we get the help we need. I know we’re lucky to get any help at all. Yet the help I’m currently getting doesn’t quite meet my needs, and Johan’s been struggling for years without and nearly died because of it. I wish there were an easy way to fix it, but neither of us have the spoons.

Thursday 10th July, 2014Thursday 10th July, 2014 Danni

Whoopsie, Backwards

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

Things went well in the care home until they didn’t. A couple of nights they didn’t check on me frequently enough, causing my pad to leak (I hate that, it makes me feel really uncomfortable and embarrassed, which I’m normally not about being incontinent). Then one night they pretty much forgot I existed. Well, the nurse knew I was there and gave me my medication, but she didn’t let the night staff know (they hadn’t been in since I’d gone in) so they left me for 7 hours. People on Twitter ended up calling the care home (thank you!) and they eventually sorted me out (after 2am), but by that point I was dehydrated, my hand were red, cold and numb from the window being open, and I was tired and still needed changing into my night clothes as I’d been out that day. The only reason I didn’t have a pad leak was because I was dehydrated. It was horrible.

I’ve not been as well since. I really wasn’t well enough for my chair to come home, but we did it anyway because I needed to. I was meant to see my consultant on the 16th June but that didn’t happen as though I was told to be ready by 12.30pm for a 3pm appointment, the ambulance to take me didn’t arrive at mine until 3.20pm (and my consultant is super busy so they couldn’t fit me in later). Apparently we should have told them the appointment was time sensitive. I thought all hospital appointments were?! In a way it was a good thing as I wasn’t well and I was dreading the travel.

My 28th birthday I mostly slept. When I was awake Johan got me a McDonalds as I really wanted one and he’d bought me some cupcakes from French Oven which were nice. I got some lovely cards and Vivacia Dreams sent me some awesome presents 😀 I am so lucky 🙂 Sammie also sang me happy birthday on Skype, which made me very happy.

Johan finally had his care assessment which said he has substantial care needs (same level as mine). He’s not too happy about it but hopefully they’ll provide the help he needs soon. They’re arguing over whether it should be learning disabilities or mental health who should cover him (as autism doesn’t fit either) but we don’t really mind so long as it happens.

We decided to get Sky Sports for a bit as we both like Cricket and Formula 1, and Johan is getting into football 😛 While sorting that out Johan managed to get us a discount and get us 152mbps broadband (though we somehow get 160mbps download- Virgin Media’s false advertising :P). He also ordered a SuperHub 2 which has (after a couple of days teething problems) fixed our wireless problems. We’ll have to wait to see if it’s fixed the router randomly breaking issue, though I think it probably has.

I also bought a Chromecast. I’ve been considering it for a while, and wanting to watch YouTube on my television without a couple of minute delay (how long it takes using the TiVo box) pushed me to get it. I’m really happy with it, as not only is watching YouTube videos really easy now, but I can also watch Twitch streams and play games on it. It’s also really easy to stream TV shows and films so I’ve watched a few more episodes of My Little Pony and I’m hoping to watch Brave soon.

I won tickets to the Durham Jets Twenty 20 match on the 4th July. I was hoping to be well enough to go myself (wishful thinking mostly) but when it became clear I wouldn’t be, we contacted NatWest (who I won them from) and got them transferred to Johan (who already has a season ticket, but yeah). My friend Sue wanted to go, so we gave her and her mum a ticket. Unfortunately the cricket never got started due to rain, but I did get to meet Sue which was awesome 😀 I’m hoping to see her again at some point, and my goal is to be well enough to go to the cricket next year.

Vicky also visited as she was back in the UK for a little bit from Palestine. It was really nice to see her, especially as last time she was here I wasn’t really well enough to talk to her. She brought with her a copy of the updated version of her book, Caged in Chaos, which I’d been intending to get for Johan (and will get on Kindle for myself when that’s updated because I currently can’t read print books) and a gorgeous purple ring for me 😀

Otherwise I’ve mostly been Skyping with Sammie when I can and playing games with her, and having the odd medical visit (CFS team, who couldn’t do the transfer stuff because I wasn’t well enough; GP because of me drinking loads; district nurses due to bed sore on my ear) every so often. I’m resting loads, still getting the odd 16 hour sleep (not helpful for bed sore on ear), and hoping I start improving again soon. I am also slowly starting to accept I’m bendy, after Johan pointed out my arms bend backwards when I think they’re straight, and it looks like I meet the criteria for EDS with that and several other things. At some point I really need to list everything that may be relevant from my medical history (joint pain since I was kid, dismissed as growing pains for years; fainting as a teenager when stood up too long; stamina issues since childhood when walking; acid reflux since I was at least 5 years old; cuts and bruises taking months to heal; local anaesthetic not working; lots of other stuff) as what I thought was normal is becoming obvious that it wasn’t. Is hard though. It might not be EDS, but I want to find out as it’s genetic.

I’m hoping to fix my sleeping pattern at some point, as I’ve gone nocturnal again. Right now my biliary system is being annoying (gallstone-type pain) so I have to wait for that to calm down. Could be worse – I’m not screaming and distraction is working at least some of the time right now. Pain sucks.

I’m gonna improve at some point. Just a bit impatient for it to happen now 😉

Saturday 28th June, 2014Sunday 29th June, 2014 Danni

Swish

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

I’m okay. Physically not great, but I’m coping. More explanation soon.

The world is weird. And good. Right now I can only access a tiny part of it, but I’m here and it knows. Speech and sounds lose meaning and become music in my head. Sometimes loud, scary and painful, but mostly gentle and pleasant.

I try and read on my tablet and the words bounce around and change shape and become something other than words. The things I can see in this darkened room gain colour and movement and dance. I let them, as it makes me know I’m here. I can still see them with my eyes closed.

I go back to the world of language and meaning when the room becomes brighter and I sense someone come in. The world I’m normally most comfortable in, the one I’ve had to learn it’s okay to leave sometimes. I used to only leave it when awake during overload, so found it scary. I know now that leaving words behind isn’t bad, especially as words take energy that is in limited supply. I need it to interact with people though, as I don’t know how to communicate without it.

I don’t know how to describe it properly, the world without words. I know others spend more time there, and are much more used to it. Many find it easier than words. I never used to, but now words don’t always make sense so I’m learning how to be without them again, like I know I must have before. Without overload it’s beautiful.

Friday 6th June, 2014 Danni

Super Sitting Success

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

I’m hoping to post the photos I took to go with this post at some point, but I’m not at home right now so will be when I’ve got more cognitive spoons to do so (I think I’ve got them online, somewhere) 🙂

Stuff has happened. Lots of stuff. Bullet point time!

Payback from seeing my brother only lasted a couple of days. It’s been a lot shorter in general recently.
I saw the CFS team. They are going to help me with learning safer transfers next time they visit (after I’ve seen Dr Spickett).
I sat up independently on the edge of the bed! It was amazing and my heart didn’t start doing funky dances until after I was lying down for 30 minutes. It’s strange.
A couple of days after that, I had no dizziness. Dizziness has been a constant of my illness since the beginning. So I sat up again. And was fine. Then I decided to try standing, and after a couple of failed attempts managed it while wearing my green high heeled boots (I can’t put my left foot flat on the floor with my leg straight) and my zimmer frame.
Since I was standing and pretty steady with the help of the zimmer frame, I tried walking. And managed three steps! They were little steps, but I did it! Afterwards I took one step backwards and collapsed on my bed, but I walked!
I didn’t get any payback from that, though my dizziness did come back and hasn’t gone away again since (oh well).
I went to the local polling station in my wheelchair and voted. We’d forgotten to apply for a postal vote for me and it was a good thing in the end. I wasn’t really well enough but I managed it and wasn’t too bad afterwards 🙂
Had visit from Sammie. I’ve been playing lots of Minecraft with her and talking on Skype with her but it was amazing to see her. We had a grown up discussion about something important she needed to talk about with me, then we had awesome mum and daughter time with lots of cuddles 🙂
Had care plan review with someone from the care agency. Really overdid it during it (I could tell as I was struggling to answer questions from about halfway through). Got payback from that 🙁
Johan had his care assessment finally. I did most of the talking as Johan can’t talk about himself. That was also too much but the payback (which was still happening from the last visit) only lasted a couple more days, luckily.
Sammie made me a purple penguin house in Minecraft, and herself an ice palace (inspired by Frozen) with a jaguar. She’s much better at building in Minecraft than me 🙂
Our upstairs neighbour’s brother broke into their flat. It was horrible. I spoke to the police when it happened (during the middle of the night) then gave a statement to the police the next day. There was also repairs done. The noise made me worse than I had been for weeks for a few days and scared us.
Johan went to see the cricket a few times. I think he enjoyed it.
I bought a couple of new shinies. A new SSD for my laptop and a Kindle paperwhite to read on. Yay!
I’m now in a care home for just over a week. Came in yesterday and will be going home next Friday. This is so Johan can go to see his friends and family. It’s mostly good (though I still don’t agree with care homes).
I had a bath! It was amazing! First bath since I moved house 😀 I feel properly clean. My hair also looks like hair, according to Johan 😛

Tomorrow Johan goes to Glasgow the Leeds. I’ll be keeping in touch with him via Google Hangouts and Sammie via Skype. It’ll be the longest we’ve been apart since he moved in but it’ll be good for him (and I can do more thanks to the hoist and a bath!).

I’ve done so much in the last few weeks and I’m really happy 😀 Johan’s assessment result said he has substantial care needs and his provisional personal budget is similar to mine, which he’s finding hard to come to terms with but he needs the help. Hopefully it’ll make our lives a bit easier, as we’re hoping to join our care packages together so we can both get the help we need.