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 🙂

Downsides to Being Danni

Yesterday I wrote a blog post, but forgot to publish it before sleeping. Fixed now, but I was a silly sausage.

I’m normally a very happy Danni. Penguins, friends, family, technology, purple, all awesome things that make me happy. There are some things that I don’t like about being me, some coming from being ill, others from being Autistic and Dyspraxic, and some combined to make smaller issues bigger.

One of the main ones is struggling to communicate with friends and family. There are several things that cause this to be an issue. The first is unless prompted, I forget people (and things) exist. Luckily these days there’s friend lists on Facebook and similar, but I’m unable to name all my friends and family without some form of prompt. I love them all dearly, it’s a quirk of my memory that’s been made much worse by being ill. I have to keep reminders around so I never forget who Sammie (my daughter) is. I imagine most people don’t forget their own immediate family, but I do. I find frequent Facebook statuses, tweets and stuff really helpful to remember who people are 🙂

I’m also pretty face blind. I don’t recognise myself in the mirror, and remember other people by hair, clothing style, voice and movement. I do better with photographs, but have thought pictures of my sister were me before. If someone drastically changes their hair style, especially without warning, it can take me a while to get used to their new one. This is less of a problem now I rarely see people face to face but it’s still frustrating.

I struggle to initiate conversation, even with people I really like and know well. Not because I don’t care about them, but because I don’t know what to say. I was getting better at this but then I got ill and it’s bad again. I really appreciate when others start a conversation with me because replying is much easier. Unfortunately since I became really ill I’m not always up to long conversations, but I’m hoping that will improve soon.

I’ve got a type of hearing problem where I can’t hear speech properly when there’s background noise. My actual hearing is better than average (I can hear things most other people can’t) but I can’t filter what I hear so have everything coming through, which is exhausting. I lip read to some extent which helps a bit but in a noisy room I simply can’t hear someone speaking. This is also a major part of why I can’t use the phone – I have no visual clues to help me and the line or background noise makes it nearly impossible to understand what’s being said. When I try it takes so much energy I’m completely exhausted afterwards and have relapsed because of it.

I’m tired now so I’ll leave it there, but understanding these are difficulties I have due to disability rather than being lazy or weak makes it much easier to deal with and means I can concentrate on workarounds to these issues. I’m still awesome, despite my problems 🙂

Level 100!

I’m really happy as I got my Night Elf Priestess Danni to level 100 this morning. I’m kinda overwhelmed with all the stuff there is to do. So far I know I want to finish all the zone quests, search for all the hidden treasures, kill all the rare mobs,  level all my professions to 700, do the pet battles in my garrison, level my garrison buildings and heal all the dungeons in a guild group, preferably on heroic. That should keep me busy for a bit 😛

I’ve also managed to fix my problems with Minecraft. Turns out there’s a problem with the latest Java and going back to an older version fixed the crashes I was having. Yay! Sammie and her friend want me to play on the Minecraft server on Friday so I have that to look forward to.

My health seems to be improving a bit. Not only can I spend a lot of time on my computer, but I’m also able to be propped up more in bed. If I’m still doing well tomorrow I’ll be trying to sit on the edge of the bed (with Johan helping) to try and build up my tolerance again. I’m also finding reading a bit easier now. I still have the cold of doom but it does seem to be slowly easing up.

I got my blood results back from the hospital and it turns out I’m malnourished. Various deficiencies which I’m pretty sure are caused by not being able to eat properly for far too long. The doctor has recommended supplements and help from the dietician. I’m wondering though if it’s being worsened by my digestive system forgetting how to do its job a lot of the time. If I get that sorted though I’m hoping it’ll mean I feel a bit better, even though I know it won’t fix everything. The penguins are telling me I need more fish. I agree with them.

Sleeping pattern is still back to front. Not too worried about it but I’m trying to push it back as that works better for me than trying to bring it forward. If I can get it closer to normal I don’t know how long it’ll last but it’ll make playing with Sammie much easier so it’s worth it.

Penguins still exist. I have good friends. There are amazing people who I love and who love me. I’ve been able to do loads for me. Today is a good day 🙂

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 🙂