Merry Christmas!

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 😀

Vampires

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 😛 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!

Upright Is Cool!

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 😀

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 😀

Sleepy Danni (Again)

I was hoping to be more with it and awake today than I was yesterday (I’d not got much decent sleep as there was a dog whining for hours). Unfortunately that didn’t happen, and I spent most of the day asleep, missing the time I’d planned to go into Minecraft with Sammie and her friend 🙁 I did get on eventually, and we played a bit, but I’m annoyed I was asleep so much 😛

It also means I’m nowhere near to fixing my sleeping pattern. Nevermind 😛 I’m playing World of Warcraft at the moment where there’s loads of stuff for me to do. The problem is choosing what to do first 😛

I had an accident that required my bed to be changed, which made Johan very meowy. Luckily he was already awake, as if he’d been asleep he would have been even more grumpy. I’m very grateful I have a spare U-shaped pillow.

This cold is reminding me it’s still here. Feeling all bunged up and headachy today. I think the sitting up on the side of the bed is on hold until I’m a little bit better. I’m glad I’ve not relapsed though.

I’ve got a couple of books I want to read. If I’m able to stay awake after coming off computer tonight then I think I’ll start one of them. I wanted to read 50 books this year and I’ve only managed 32, so I’ve got a lot of catching up to do. I’m so glad I’m able to read now though 🙂

Java Fail

For some reason Java keeps crashing on my computer when I’m running Minecraft. Very annoying but I’m not with it enough to fix it today. Maybe tomorrow.

I’ve played Minecraft with Sammie today (when I could stay in) and then went into World of Warcraft for more levelling. The queues were much shorter today (about 20 minutes) and there was a lot less lag. Yay! I’ve managed to get to level 96 which isn’t bad going for me 🙂 Much of the guild are close to or level 100 now, which is awesome. Johan is the best geared in the guild, which is cool (though it’s only heroic level stuff so it’ll probably change when raiding starts).

I’m well enough for my computer (obviously) which I’m super happy about but touch and stuff is being really problematic. I want computer a bit more right now but if it continues for more than a few more days I’ll have to sort something out.

Got a letter from my consultant today. Mentioned I’d a previous positive ANA test (news to me) and now have probable POTS (not surprised). Also says fatigue of unknown origin, which is fair enough. I’ve been referred to Professor Julia Newton so hopefully she’ll be able to help (I know a lot of people who have asked to be referred to her so I’m feeling very lucky it has happened for me without having to ask, and that she’s not far away).

I’ve got a couple of blog drafts I want to finish, but all brain power currently going into computer gaming related stuff (or talking to very important people). I’m sure I’ll manage it at some point 🙂