Dec 092014
 

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?

 Posted by at 3:12 am
Dec 052014
 

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

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 :-)

 Posted by at 12:53 am
Nov 302014
 

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 :P 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 :P 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 :)

 Posted by at 11:05 pm
Nov 292014
 

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.

 Posted by at 9:27 pm
Nov 282014
 
My avatar for High School Story. The purple penguin on my shoulder is a requirement :)

My avatar for High School Story. The purple penguin on my shoulder is a requirement :)

Today was better than yesterday. I’ve not been able to be as high up as I would like, but I have managed computer and talked to Sammie and things.

The main thing I spent today doing was attempting to make an avatar for the High School Story forums. I have access to all the game’s assets so thought it would be easy. It wasn’t. I gave up completely on the idea of hands (why wouldn’t they look right?!) and it took me far too long to figure out where the face/head/clothes go. I based it off my actual character in the game but changed my hair colour to purple (from red- purple isn’t available in game) and added a purple dress normally worn by one of the other characters (Payton), and glasses from the Nerd outfit. Once I’d figured it out (several hours later), I added the purple Tux that’s the mascot for this website on my shoulder as a pet. If I struggle with putting together a few ready made assets, I’m never going to be good at actual graphics design 

I’d completely forgotten about the Black Friday sales when I bought the printer. The good news is it works, and it’s much quieter than the old one. It’s a colour laser printer with wifi so I don’t have to rely on anyone else to print for me (though I do need them to go fetch the printouts afterwards). Hopefully I’ll be able to print the stuff out for the carers and things will be easier.

I found out The Sims 4 was on sale today, and as it was on Sammie’s Christmas list I bought it for her. After a few issues with Origin (password is incorrect messages- yet it was exactly the same as the one I was using and it worked fine here) it’s now downloading and I have a very happy daughter. Ideally I’d have given her it at Christmas but the DVD was much more expensive and there’s no gifting system on Origin. Sammie being happy makes Danni happy :)

Over the next couple of weeks I need to finish planning all the Christmas (and birthday) shopping I still need to do so I can try and get it all done before Christmas itself. Sammie is mostly sorted but there are other people, like Johan. Luckily I’m not super ill like the last few years so I’m hoping I’ll be able to do it with plenty of rest and some help from Johan. I’ve also got WoW to play (though I should probably look at ways to reduce time needed to do things in there, as it’s taking me 2+ hours just to do garrison stuff right now) and I got to rank 20 in Hearthstone today for the cardback. No losses with a priest deck made up of random cards I liked the look of :P Unfortunately by the time I got to speak to Sammie my brain was pretty broken so I couldn’t play Minecraft, but talking was fun.

Only 2 days to go to complete NaBloPoMo. I’ll be really happy if I manage it, and even happier if there’s no relapse this year. Bad days I can cope with, bad weeks are much harder.

 Posted by at 10:57 pm
Nov 272014
 

Noise sensitivity is really bad today. Every little noise is making me feel like I’m going to throw up and causing loads of pain. Earlier there were several noises going on which by themselves wouldn’t have been too bad but combined caused a jerking attack. I didn’t lose full control this time, but every time I tried to move something I’d do that movement plus several others. Very annoying. Johan did say my muscles were being affected by multistrike though which made me laugh (multistrike is a thing in World of Warcraft that let’s attacks happen more than once).

Maybe sitting up the other day was a bad idea. Maybe it’s completely unrelated. I can’t be sure. All I know is I’m knackered now and I don’t know where my ear plugs are. Obviously I’ve not been on my puter today. Tomorrow hopefully will be better.

 Posted by at 6:35 pm
Nov 262014
 

Less sad today. Still don’t know why I was yesterday but never mind. Today was an okay day, though had an unexpected visit from someone wanting some blood, sent by my GP. I’m not entirely sure why but went through with it.

There is so much I want to do in WoW and I’ve not enough time/energy to do it all :-P I’m so grateful I’ve been able to get on my computer so often though. I also played some Minecraft with Sammie and her friend which was fun, even though my sound sensitivity made it more draining than usual. There’s My Little Pony comics on Humble Bundle I might have to get as presents.

Fed up of the pain from eating. Is so tempting to stop completely, but I’m already malnourished and losing weight so it’s a bad idea. Today it was plain chicken breast and salad that set it off. Yesterday a sandwich (and later on a wrap). The day before, sweet potato chips and a milkshake. Pretty much anything that isn’t pure sugar and that’s dodgy too. I know wholewheat and really fibrous stuff is the worst, as it just clogs me up rather than helping things along, plus the pain is worse. Yet they include some of my favourite foods :-( When I’m well enough I should probably get some tests done to find out what’s going on, as even with the domperidone I’m still bringing up bacon from yesterday’s wrap.

What’s it like to be pain-free? I don’t remember. I’ve been in pain of varying amounts since I was 5 with no real let up. Maybe earlier, but my memory is fuzzy from before then. When I was a kid it was mostly reflux and joint pain (dismissed as growing pains, though they didn’t stop after I stopped growing). I didn’t even know it wasn’t normal. Now I’m just relieved I can get it down to bearable levels with tramadol. Dunno what I’d do if I couldn’t, other than be lying in bed unable to do what I can now. I’m grateful I can do what I can.

Penguins are awesome. Saw baby penguins on Facebook today, sent by a friend. They took away the rest of the sad from last night. Sometimes I just need to remember to be more like a penguin. Noop Noop!

 Posted by at 10:42 pm
Nov 252014
 

Today I am sad. I don’t know why. I can’t think of anything of anything in particular I’m sad about. I’m just sad. Being sad is unusual for me, especially without a reason. I’m not really wanting to do anything, which is very much unlike me. But it’s okay. Sometimes being sad happens, and I’ll be okay in the end. I still have penguins, even if they’re not cheering me up like they normally do. Today I am sad, but that’s okay.

 Posted by at 7:21 pm
Nov 242014
 

A blog post not written in the middle of the night?! Madness!

Resting in bed after sitting up, super happy but dizzy and tired.

Resting in bed after sitting up, super happy but dizzy and tired.

Today I have spent a lot of time on my computer. I have played Minecraft and WoW, ordered stuff I needed online, sorted out general stuff and done other computery things. As I was feeling okay this afternoon I decided to sit on the edge of the bed (with Johan helping to hold me up). My treatment team want me to do this as much as I can (without overdoing it) to try and rebuild my tolerance of being upright.

I managed about 30 seconds (we weren’t counting) and hugged Johan (it’s much easier when upright!). No photos of sitting up as Johan was busy with me, but I took one about 10 minutes after while resting again. My heart rate took about half an hour to get back down to normal (and my normal is pretty much tachycardic itself, around 100 beats per minute) but I felt okay to go back on my computer, which was good as Sammie was back from school and I wanted to talk to her a bit :) Today has been a very good day :D

I’ll have to see how I am over the next few days. I also had a small wash and change of clothes and bedding this morning, so I might have been a bit silly doing them all in one day. I’m hoping it’ll be okay, as I’ve felt well enough to try sitting most of the last week (only when I didn’t sleep well did I feel too crap) and I do feel like I’m starting to improve. The last few years I’ve relapsed either at the end of November or the beginning of December, but I’m hopeful that this year will be different.

I do need to do a food shop though. I have a Wiltshire Farm Foods delivery coming on Thursday to give me a few meals I can have (plus some pureed sandwiches that I actually like that I can have if I can’t chew) but we’re getting low on other food to last until then. Since my eating is already pretty poor this isn’t a good thing. My digestive system still hates me, and I’m not particularly happy with it (it was being annoying this morning, meaning Johan got less sleep than he should have) but I’m getting used to that. If I carry on having good days I might have to see what else I can do :D

 Posted by at 5:13 pm
Nov 232014
 

Been asleep all day so a short post now :) Also, apologies for my blog being down- I have monitoring set up but Johan doesn’t, and being asleep meant I didn’t get it fixed until after I woke up again.

One of Vikki George’s 30 wishes (see last post or http://my30wishes.blogspot.co.uk/) is for 30 people to watch Voices from the Shadows. I have this on DVD, though I’ve not been well enough to watch it yet. However, those who have seen it say it’s a very important film about severe ME.

At the moment it’s free to watch online (until the end of the year, maybe longer) using the promo code VOICES on Vimeo. You have to register your name, email address and a password, which you can do after clicking the “rent for $3″ button. You put the promo code in by clicking the “apply promo code” link under the billing information section (which you can leave blank).

The film is very emotional and is not suitable for children or young people with ME. It’s meant to educate those who don’t know the illness or the issues surrounding it. However, if you’re an adult it would mean a lot to me for you to watch it. Thank you.

 Posted by at 11:54 pm