Category: Real Life

Danni

Merry Christmas!

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

To all my readers and friends, Merry Christmas! Or if you celebrate something else or nothing at all, I hope you have a wonderful day!

I’ve had an awesome Christmas so far. Yesterday Sammie came over for a bit to pick up her presents, which meant real life hugs and squishes were had 😀 Best present ever!

Today I’ve been completely spoilt with masses of presents, from lots of family and friends. I’ve been unable to get all mine to others sorted in time for Christmas this year, but I’m hoping to get those I’ve missed within the next week or two. My favourite was a gift from Sammie- she made a ornament of us two as penguins, me being purple and her being pink, hugging each other. Me being a purple penguin and her being a pink penguin has been our thing now for many years, so it means a lot to me. She also got me new penguin bedding and a matching cushion which are super cute 😀

Johan had bought me a telly for Christmas a few months ago, but surprised me with a Pingu ball (Hafu Pingu rather than telly Pingu), and Rarity, Rainbow Dash, Fluttershy and Twilight Sparkle soft toys. My sister Meggy had visited a few days ago and she gave me an amazing super soft penguin which I love to stroke. My other sister Becca gave me some awesome penguin pyjamas and penguin stickers. Esther gave me some penguin fuzzy socks (I love fuzzy socks!) and an awesome penguin Christmas jumper. Other presents included penguin stationery, a loom band penguin and money/gift cards. Very very spoilt Danni 😀

I also saw my brother on Christmas Eve, which was a lovely surprise. I’ve spent most of the day on Skype with Sammie, sometimes playing Minecraft (with her and her friend), sometimes just talking. I’m so grateful that I’m well enough to speak to her, be on my computer, listen to a few Christmas carols and songs and hopefully later have Christmas dinner. I even managed to speak to my mum-in-law on the phone for a minute. Now is time to rest and hopefully I’ll continue to have a good day 😀

Danni

How Can I Deal With Frustration?

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

I’m frustrated. Mostly because of illness/disability stuff. And I don’t know how to deal with it. There are various things I’m frustrated about, but I don’t know how to deal with them without making myself more ill (I can explain the basics okay but going into the details is so draining I can’t just ask someone else to help). The frustration isn’t helping.

The kitchen is a pigsty. Again. I tried to investigate cleaners but I’m not up to contacting them and explaining everything that would need to be explained. The carers are limited in what they can do, and it’s back to the point they basically can’t do anything. Johan can’t do it due to executive functioning issues, and can’t ask anyone else to do it (or let me ask someone else to do it if I have a good day) due to anxiety issues. Esther has similar executive functioning issues to Johan and it isn’t fair to expect her to do it all anyway. So I’m stuck. I’m sure nice people would offer to call people for me but it took me 2 years to get a 2 page document to give to the carers written and printed so it’s highly unlikely I’ll be able to provide them with the information they need anytime soon. I want to just go in there and do it myself but that’s impossible from bed.

My bedroom needs tidying. I don’t have enough storage space for everything in here. Now I can ask the carers to help with this, but at the moment when they come I’m either asleep or feeling horrendous, and I don’t feel well enough to cope with the movement/noise until after 10pm. I might need to just suck it up and deal with the payback it’ll cause if they do it while I’m not really well enough as I’m meant to be going to the hospital on the 16th and I’ll need the room for the stretcher. But it takes so much energy dealing with the constant questions about where things go (which I mostly can’t answer because I can’t see if there’s room on the shelves or in the cupboard or anywhere else). Then it takes one day for there to be random stuff on the chair, wipes on the floor, I knock things off the bedside table, random bowls or plates to be left in here, toothpaste not taken back to the bathroom. No one is to blame but I can’t fix it, and I’m not well enough to ask anyone else.

I need to sort getting the sofa, broken wheelchair and boxes of electronics taken by the council. I nearly got the first part of this this done but needed to know how many boxes of stuff there are as they’ll only take what’s listed. Johan said he’d let me know but never did. The second part requires Johan to pay for them to be taken which I’m scared he won’t be able to do when it needs doing. At the moment there’s no way to automatically pay online, and I’d need the council to tell me how much it’ll be because there’s nothing on the price list for boxes of broken electronics and computer parts. With Johan not doing well we’re stuck and it means I can’t buy the daybed and they might refuse to put my hoist in there (and in here if my bedroom is still a mess).

We’ve heard nothing about Johan’s support. The last we got was a letter with a provisional budget and his statement of needs but it’s been silence since then. Neither of us are in a fit state to be chasing it up. The support for him would, in combination with my care being rearranged to work with it, solve most of the problems we’re having, as some of it is to communicate with other people for us. I basically can’t read letters on paper now without massive effort (the words fade in and out and the letters keep switching around – it’s better on a screen with larger text as they stay put more) and made myself stupidly weak just trying to read the DLA form that was meant to be in months ago. I want to fix things but I can’t.

I’m not asking for advice on how to solve the issues I’ve mentioned, just wanted to state some of the things I’m frustrated with. What I am asking is how can I cope with the frustration of things being wrong but not being able to fix them?

Danni

Christmas Plans

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

I’m meant to be reading a book so I’m procrastinating by writing this blog post instead 😛

This year I actually feel well enough to make tentative plans for Christmas (also Newtonmas for those who don’t celebrate Christmas). I can’t buy the bulk of the presents I want to get people until the middle of the month (all my big bills come out the day before I get paid) but I’m starting to plan them.

So far my ideas are:

  • Buy presents for people. Get them wrapped by Amazon if possible, to reduce the pressure on Johan. Sammie’s presents are the exception, as I want to get specific wrapping paper for her Christmas and birthday presents.
  • Decorate my room. Will need a bit of a tidy first, but I want my Christmas tree up and maybe some tinsel around 🙂
  • Attempt to make Sammie a birthday card. This may backfire spectacularly so I’m not mentioning it to her, but now we have a colour printer that works and I’ve got lots of nice card and things, I’m going to try and make one (I’ve asked Johan if he can do the cutting out for me). I’m hoping my hands hold out.
  • Have a nice meal. The actual date is fluid as it depends on how well I am, when Esther is here and stuff like that, but I’ve started an order with some nice food in it to be delivered a few days before Christmas, and it’ll be nice to have a meal together. I’m hoping to organise it by finding out when everything goes in the oven and helping Johan by setting timers and reminding him so he can concentrate on the actual cooking bit.
  • Watch a film. Not sure what one I’ll be watching but I do want to manage a film if I can.
  • Watch the Doctor Who Christmas special. I need to catch up first really, but I’m hoping I’m well enough to watch this on Christmas day, or at least soon after.
  • Talk to Sammie. The most important one on this list. If I manage nothing else, I at least want to speak to Sammie around Christmas/her birthday.

I’m still a bit up and down but overall not doing too badly for me. I’m hoping if I pace things, I’ll manage most things on this list. I’m going on my computer nearly everyday with no payback so it should be doable 🙂

Danni

Completed NaBloPoMo!

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

I’ve managed to blog for 30 days in a row. It was hard, but luckily this year there were no relapses to get in the way (though I still have that rotten cold…). I’m really happy to have managed it. My hope is to continue blogging regularly, though not necessarily everyday from now on. It feels good to write here.

Yesterday was an okay day until I discovered a hole in Penguin. He had been burnt and some of his filling was falling out from his back. We think it was an accident by one of the carers but it means he can no longer be heated up to help me with pain. He’s now sitting next to Penelope on the purple penguin throne (my old commode with purple fabric on it) and Johan has bought me another penguin to do his old job. He says he’s enjoying retirement, and Patricia, Johan’s penguin, is helping me until the new one arrives.

Today wasn’t great when I first woke up. During the night I woke up because I was peeing but was too tired to wake Johan up to change my pad, so it was close to leaking this morning. Luckily it didn’t, but I was really tired and in quite a bit of pain. I had a roast pork ready meal and that was quite nice for something microwaved, and after the evening carer had been I felt well enough to go on my computer. Didn’t get to speak to Sammie much as she was in the bath when I got on and at 7pm there was a meeting for my World of Warcraft guild about raids and stuff I wanted to attend. I did find out she’s enjoying the Sims 4 though which is awesome, and hopefully I’ll be able to talk to her properly within the next few days.

Since my brain wasn’t working properly I’ve only really done my garrison stuff and then fished in WoW today. Yesterday I attempted to do my first heroic but I just wasn’t well enough to manage it cognitively. I think I’ll be waiting until everyone else is overgeared for it and ask them to boost me 😛 I’m gearing up through my follower’s missions and still have some rares to kill and quests to complete in Nagrand. The fishing was fun  and relaxing. I’m hoping to get a level 3 fishing shack by the end of next week by getting 100 of each type of enormous fish in Draenor. I’ve already done two of them so it feels doable if I can manage enough computer time 🙂

It is the first day of Advent. The carer tried to correct me and tell me it was tomorrow, but it turns out she didn’t know it started 4 Sundays before Christmas. I’m going to start planning for Christmas properly now, including figuring out where I’m going to put my Christmas tree. I’ve got an idea but I’ll need some tidying up doing first 😛 I wish I could have gone to church but that’s rather unrealistic at the moment. I’ll try and watch the Christmas Day service on the telly though.

Apart from Penguin being burnt I’m happy. I feel really lucky overall, despite being pretty ill. I can do so much more than I could this time last year, even if I am still in bed not really able to sit up properly yet. I’m hoping that this year I’ll not relapse over Christmas and that way I can enjoy it properly. I’m going to see if I can get my Christmas jumper out soon. It has a penguin on it 🙂

Danni

The Problem With Digital Downloads

Computers, Danni, Gaming, NaBloPoMo, Real Life, World of Warcraft

I’m a big fan of digital downloads. Not being able to get out of bed means if I want to get something independently, digital downloads are the way to go. My biggest purchases are definitely games, but I also get music, films and books this way. It’s awesome.

I mentioned yesterday getting Sammie The Sims 4. It was one of the games she wanted for Christmas and I took it into consideration when building her computer. Thanks to the Black Friday sales, the digital download version was half its normal price on Origin, so it made sense to buy it then. The Standard DVD edition was more expensive than the digital deluxe version. Sammie uses my Origin account as she’s too young for her own (plus it means she has access to the games I’ve previously bought, which I’d give her anyway) but unlike Steam, there’s no gifting option for digital downloads. This means as I wanted to buy it while it was on sale she got access to it immediately, rather than opening it at Christmas. Not exactly a big issue (I’m sure she’ll have plenty of other stuff to open) but it’s something that comes up now.

Digital downloads are amazing but aren’t always ideal as gifts for other people. Some providers do a good job (gifting games on Steam is easy, and you can even keep the game in your own inventory so you don’t need to send it the day you buy it) but others, not so much. You still can’t gift Kindle books and if you want to buy a game on Origin for someone else you have to log into their game to do it. There’s no chance of a surprise there and could be really awkward if you’re in different places (digital gifts are normally awesome if you’re apart as you don’t have to worry about postage).

The other problem is you can’t wrap them. If the item comes as a code (I like Blizzard for this) then there’s an easy way to get around it by printing/writing the code and wrapping that, which is awesome (I’ve had two gifts of World of Warcraft pets done this way, and the creativity that went into the message with it made me as happy as the pets themselves). Humble Bundles come with a URL so you can email that with your own message if you can’t give it physically. For other stuff though, there are less options and a game just appearing in a library isn’t quite the same as  box wrapped in pretty paper.

Some people prefer physical items for various reasons. They might collect DVDs, or enjoy reading physical books. I bought the Collector’s Editions of World of Warcraft for the extras in the box, even though digital versions were available. Digital downloads are great as you can get them immediately and send them anywhere in the world. If the DVD version of The Sims 4 had been the same price as the digital download, I’d have bought that instead so Sammie could open it from under the tree. There are advantages and disadvantages to both. I really hope the gifting options for digital items improve soon from those companies that haven’t implemented them yet, as I want to be able to give Sammie ebooks or other digital items when I want to, not necessarily at the time of purchase.