Category: My Little Pony: Friendship is Magic

Danni

Discord

Autism, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life, World of Warcraft

This is one of my favourite pony songs at the moment. I like both this version and the original, though as I heard this one first I slightly prefer it. The music video is filmed locally as well, which is a bonus 🙂

We are no longer having the carer we didn’t get on with. The agency has been excellent in trying to sort it out for us, and we met a new carer yesterday (Tuesday). She is very nice, and I’m probably going to be asking for her to come all the time (at the moment she’s only coming occasionally). Both the manager person who came out and the new carer said that we had to be comfortable with whoever comes into our flat, so they understood why we couldn’t have the other carer. It’s nearly sorted (though we don’t know who is coming today) and we’re both feeling better for it.

I’m still going on my computer most days. On Monday I finished the raid with my guild- I’ve now completed normal mode Dragonsoul, which I didn’t think I’d be doing this expansion. It makes me very happy and I’ve had lots of requests for me to raid again 😛 I’ll have to be careful as my health needs to come first, but up to now it’s been good.

Yesterday I slept most of the day. I woke up very nauseous and had to take cyclizine, and it knocked me out. It normally only does so for 2-3 hours, but this time it was most of the day, though I did wake up a couple of times for an hour which meant I got to meet new new carer and the manager person when they came.

I woke up properly when new new carer came for our evening call. She was 15 minutes early, but when Johan said I didn’t like people being early she was happy to wait until 8.30pm and come back. The call went well- Johan taught her how to use the electric toothbrush (I don’t know why, but it confuses everyone), she gave me a bed bath with my wipes (I felt I could trust her) and got me into pyjamas (pink penguin hoodie ones!), brushed and plaited my hair and we had a chat. She also tried to find out who was coming today, but the on call guy forgot to get the sheet. It’ll be okay though.

Although she’s not quite as awesome as lovely ex-carer (who somehow had a personality that fitted in exactly with ours) she is very nice and I can tell she’s doing the job because she cares, rather than just for the money. She also wants to get some of the bath in bed wipes for her brother (who is also disabled- that is how she got into caring) so I gave her the web address.

After she went and I’d rested for a bit, I went on my computer and played some Bejeweled Blitz and then went into World of Warcraft to do Argent Tournament dailies. I am wanting the mounts and the pets for the achievements, and eventually to sell the pets as I think that would be a good income source for me. The only daily I dislike is the commanders jousting one as the birds keep breaking my shield, but since I’m level 85 now I no longer die there so it’s not as bad. I got a Mechanopeep (pet) and a Turbostrider (mount). They are both red. I’m going to look awesome with them 😛

Johan got me settled in bed after I’d finished them, and heated up Penguin and another wheatbag as my feet were blocks of ice. He also gave me painkillers and got me some cheese and apples as I’d slept so much I’d not had a proper meal. Since then I’ve been reading blog posts, writing this one and chatting to Pocket Pennies on Facebook. I’m hoping to get some sleep before the morning call, but since I slept all day I won’t be surprised if I don’t.

We never heard back from the care home, so since it has to be sorted this week we’ve decided to stick with the one near our old flat. It might go better now I can actually spend time in my wheelchair, and they said they can arrange transport if we need it (which we will, as I’ll need to be reclined and tilted in my wheelchair to manage the journey).

Johan really enjoyed the cricket. He was right at the front so got to see everything, and said it was really exciting. It ended in a draw, which is apparently quite unusual for 20Twenty. I want to go when I’m well enough 🙂

I have a couple of events I want to go to. Probably not going to happen but planning is almost as much fun so I pretend I can go for a bit 🙂

Pain and nausea may be pretty bad at the moment but I’m coping with meds and penguins and sleep and I’m happy overall. It is funny- nearly everyone who meets me now says I’m really cheerful. It is very easy to be positive when you don’t have depression. I want Johan to get better as well, but that may take a while. I wish there was a magic cure for depression (and M.E), but until there is one we just do what we can to make life as bearable and as good as possible. I likes being autistic as it means I can be super happy just by having penguins. Johan likes Fluttershy in a similar way 🙂

Fluttershy vs Penguins

Fluttershy vs Penguins by Kasatania.

Danni

Bumpity Bump

Autism, Computers, Danni, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life

Things with the new carer aren’t going as well as we hoped. She’s new to caring and makes a lot of assumptions that aren’t true. We also feel very uncomfortable with her in our flat and she gives out far too much information about her other clients, which isn’t good. She’s also really late to every call- over 40 minutes late this morning. I know we said being a bit late was okay, but without contact that’s too much.

We’re going to have to email the care agency to see if we can change main carers as this isn’t working properly. She is so loud she wakes me up when I’m sleeping, which is not good for me. We knew it wouldn’t be the same as with Lovely ex-Carer (who says I should now call her Crazy American now, but I’m not so sure about that) but the other carers we’ve had from this agency have been nicer and easier to deal with.

Johan is also not doing as great, but we think it’s directly related to the new carer. Things got a bit scary yesterday morning as he really wasn’t coping, but I managed to calm him down a bit. Some of it is the change (it was affecting him before it happened) but some of it is not coping with the new carer. As I’ve been asleep he’s had to try and deal with her by himself, and it’s not really been working well.

My sleep has gotten a little out of it’s normal pattern. The new carer being so loud as to wake me up isn’t helping, as it made me overtired and made it even harder to get to sleep. Bleh. I’m hoping to nap soon to try and catch up as I feel exhausted.

I’ve managed going in the living room every day for the past few days 😀 I may be fully tilted and reclined in my wheelchair, but it means I’ve been able to go on my computer and play some games. I also went into the living room for Lovely ex-Carer’s party after she’d finished work. We watched My Little Pony: Friendship is Magic (she does like it :P) and had chocolate cake. It was awesome. We’re already missing her.

This blog (and my old one) has moved servers. Since J & D Hosting is closing down, Johan has found a VPS and he’s hosting my blogs on there as I’m not well enough to do the management bit now. He didn’t know originally, but is learning 🙂 There were a few minor issues but it looks like everything is working okay now.

Johan has gone to watch some cricket. He’s at Durham to watch them play against Lancashire (he wants Durham to win). It’s 20Twenty so only lasts about 3 hours, which is good. I’m probably going to nap so will be okay. He’s not been to see cricket live before so I hope he enjoys it. He picked out his seat and the photo he posted on twitter shows he picked well 🙂

I upset my sisters. I have very low tolerance for intolerance of any kind (which is a big failing of mine), especially from people who should know better. They didn’t understand that generalising about a group of people on the grounds of race is racist. I shouldn’t have said they were publicly but I was very frustrated. Some friends tried to explain better but were attacked by Becca, who also wrote a very upsetting comment about us needing to get off the computer and get a life (all of us are ill in various ways and degrees, and being on the computer helps).

That was related to the horse. I’m not sure if it’s still there (I haven’t heard it since Friday) but Lovely ex-Carer has seen some people there looking after it and it has/had water and stuff so I’m less worried now. It certainly looks happy and in good condition (I went to see it on Friday morning) so while it’s random, it’s not too worrying.

I think I’m going to nap now. I’m liking being able to get out of bed, but stuff is very tiring.

Danni

Wheelchair Fun

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Okay, being realistic Leeds is probably a bit too much at the moment. I will stick to travelling locally until I can do that reliably and without payback before trying to travel further. It was fun planning though and means I have an idea where to stay and what trains to get for when I am well enough to go 🙂

Wednesday I managed 4 hours sitting in my wheelchair in the living room, and was fine. It was tilted and reclined, but still I was out of bed for 4 hours! I was even able to do a proper raid with my guild (Dragon Soul) for the first time in months which was awesome. They were very understanding of me when I made mistakes and stuff, and we got up to (but haven’t beaten yet) Spine. I hope to go to the continuation on Monday if I’m well enough 🙂

Thursday I had a wheelchair assessment with the district nurse. We thought the appointment came through a bit quick and it turns out she only does basic attendant chairs, so she can’t help me. She took my measurements though and has referred me to the proper team to try and get me a suitable chair. She’s put that I need proper support and a reclining chair, and what chair I have now so it should be good. I’m hoping to go to equipment services as they have all the different types of chair there and it would be easier to find something suitable. We’ve been warned that it will take a while but it will be much better in the long run.

The 15 minute appointment completely wore me out. Turns out talking about stuff that requires thinking is still one of my most exhausting things. I think it goes with physically being better but not so much cognitively. I was hungry though so had green Thai curry for lunch. I managed to eat it myself with a fork! I used a plastic fork (purple, of course) with some tubing on the handle to make it easier to grip, and it worked! My hand was spasming a bit but I just kept swapping hands and rested every mouthful, but I fed myself with a fork! Yay independence! 😀

I had to have a nap not long after. Johan went to the Autism North East committee meeting. He promised to be home before Lovely Carer was due but wasn’t. Luckily she waited around (she thought something was up as we normally let her know if Johan is going to be out). I panicked and felt completely helpless as I could hear her outside but was unable to go let her in. It’s shown it’s even more important to get a key safe so that carers can let themselves in. Luckily Lovely Carer and Johan calmed me down, then Lovely Carer helped me into pyjamas (I had been wearing a dress) then used the no rinse shampoo to wash my hair. I think she also washed some dishes.

I’m on my computer again now. I’ve played some Bejewelled and now I’m going to do Darkmoon Faire dailies in World of Warcraft. Then I think it will be back to bed as it’s quite late already. I’ve covered the ends of my armrests with penguin socks as they were slightly torn and the socks I can’t wear as they’re too small. I think they’re cute 🙂

The cleaner didn’t turn up on Wednesday. I am not happy with this as we didn’t get any warning. I sent an email but haven’t had a response, so we might need to phone. Lovely Carer did some of the cleaning the cleaner was meant to do but she doesn’t have enough time to do the bigger jobs like mopping floors and stuff.

We have finally had our cooker fitted! Once we found an electrician and Johan phoned them, they could come out the same day (Wednesday) and it only took about 10 minutes to do. It means I can have a roast dinner when I’ve done the shopping. It was so quick and easy and not too expensive (£45) that I feel a bit silly it took so long. It’s sorted now though 🙂

I’m happy that physically I’m still improving a bit and can do a bit more for myself. Hopefully this will continue.

There is a horse in the field next to our flat. This is not normal. If it’s still there in the morning we’ll contact the RSPCA as we don’t think it should be there. I want to go see it first though as I love horses and miss seeing them now I’m in the middle of Gateshead (at our old flat we were less than 5 minutes from the nearest field with horses, and people with a horse and trap used to go by pretty regularly).

Johan has fallen asleep on the sofa. He has not been having a good couple of nights. I wish I could help but I don’t know how 🙁

Latent Existence has started watching My Little Pony: Friendship is Magic. I think he’s starting to like it 😀 It is an awesome television show for kids and adults. I’ve also given Lovely Carer the link to the episodes as I think she will like it as well. I’m also thinking of watching it again- the episodes are on (US) Netflix so it’s easy.

Tomorrow we are meeting the carer who is replacing Lovely Carer when she comes tomorrow morning. I hope she’s nice. With Lovely Carer it’s been so easy as she understands me so well almost intuitively, but I can’t expect that from the new person so will probably have to explain how to do things and about ME and stuff. That’s going to be harder. Hopefully it will work out in the long run though 🙂

Danni

I’d Like To Be A Tree

Computers, Danni, Gaming, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Danni in TGI Fridays

I’ve been out a few times in the last three weeks, and I’ve been further each time. On Monday I went into Gateshead to change my address with the bank, and also looked around the shops and bought a few items, including some long stripey socks 🙂 On Wednesday I was feeling really well for me (no payback!) so we went into Newcastle, looked around some shops (hunting for some Pony hair accessories, but we went into the wrong H&M and the right one was closed a couple of hours early) and then went to get some food at TGI Fridays in the Gate. It was brilliant, especially since I got to go on the Metro on the way home and see all the bridges lit up 😀

In my last post (if you could understand it :P) I complained that I couldn’t sit upright as I was too floppy, but otherwise was well enough to do stuff. We discovered that if we tied me upright in my wheelchair, I could go out 🙂 The first time we used a scarf, then when that worked we bought a proper torso harness which does an even better job. Because I no longer have to put all my energy into remaining upright, being outside, travelling and stuff is doable.

I’m loving how much I’ve improved in the last few weeks. I can go on my computer for as long as I want (was 7 hours yesterday, which may have been a bit too long as my bottom was very sore by the end of it :P).I can cope with noise and light even better than Johan a lot of the time. I’ve been able to reduce my painkillers as pain is mostly at a bearable level now and I can use distractions such as computer games to deal with it. I’ve gotten out of bed every day for a few weeks now I think. I can watch some television.

There are a couple of things that are frustrating me though. The first is that cognitively, I’m still not doing great. Conversations, reading lots of text, remembering things, concentrating on stuff- all are now more difficult than going outside. I got frustrated while in Newcastle because I wasn’t able to direct Johan where I wanted to go. The CFS clinic people came out a week and a bit ago, and the half hour conversation (with me lying in bed) absolutely exhausted me, and I got payback from it. Johan talks to me but half the time I don’t know what about, or don’t hear him because I wasn’t able to concentrate on what he said. I can’t keep up with Facebook and even struggle with Twitter. It’s frustrating as I feel like I’m not aware of what is going on because it requires more brain power than I seem to have. I even suck at playing World of Warcraft, and other people are noticing that I’m making stupid mistakes or losing concentration.

The second is that I still can’t care for myself. My hands are stupid- I can’t reliably hold things as they either cramp and spasm or they just drop things. This means I can’t wash myself, get dressed by myself, use cutlery properly, hold a cup most of the time, write, or do anything else that requires the ability to hold things reliably. I’m also really weak so repetitive movements such as those required to feed myself (holding things in my hands is easier than cutlery, though I still drop stuff) exhausts me to the point where Johan still has to take over at times. There’s a part of me that’s saying what’s the point in being able to go out if I can’t even look after myself.

Earlier I was on the computer playing World of Warcraft, doing Raid Finder with some guildies. Johan went to the shop to get some fish and chips (compulsory on Good Friday) and I was eating them when suddenly my body decided it had enough and I almost fainted. Johan got me on the sofa and I spent about 15 minutes struggling to stay conscious while my body jerked and spasmed, then it stopped and I was “okay” again, apart from being extra tired. It was as if it was saying no to sitting upright (not wearing the harness as the seat reclines and that’s normally enough for me), eating and concentrating at the same time. We initially thought it might be payback from Wednesday but as I recovered so quickly that didn’t seem to be the case. Was odd, but it’s not the first time my body has suddenly protested like that.

I want to read and comment on blogs more but that’s too much for my brain. In the meantime, this is the song I’ve been listening to lots (which is the inspiration for the post title) 🙂

Danni

My Little Pony: Friendship is Magic

Danni, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Ponies are good. Ponies show is very good for Danni as not too hard to understand and cheerful and cute and fun. Johan also likes Ponies but says he is not a Brony, even though all a Brony is is a man who likes Ponies.

Danni frustrated at inability to sit up straight, when can do everything else properly. Danni also frustrated at silly amount of floppiness.

Danni shower be fixed, probably in May. This because the shower fixing people are being changed over the next few months. Danni toilet also be fixed, which means a new floor. Have been told this will be blue. Will need a full assessment for shower chair because cannot use a standard one because of silly floppiness and not being able to sit up straight.

Danni play lots of World of Warcraft when on computer. Danni die a lot because no concentrate, and Danni need a new mouse as Danni mouse double clicking when single click. Danni brain is also brokened. Danni want Johan to wake up but Johan went to sleep at 5am so it is too early to wake him up. Danni hungry and want some food. Danni frustrated that Danni can’t get food by herself, and needs Johan to do it for her. Danni decided she doesn’t like M.E. at all because it makes her like a baby crossed with an old person who is silly floppy and unable to do things properly.