Remember, Remember, the 5th of November…

Fireworks are awesome!

This year I had to watch them from my bed, as I was too ill to go out. It was too cloudy to see the ones from the official display (about a mile away) but someone set some off locally so I got to see those ones. They were pretty 🙂

My sleeping pattern is completely messed up. Woke up about 4.30pm today- it was already dark outside. I’m trying not to worry about it, as it’s probably just because I have a cold and things.

I was featured in TWIM this week 🙂 I never thought I would be, as my blog isn’t really about mental health issues (more autism and M.E.), but I’m happy anyway. 

Johan’s killed his graphics card by keeping the side off his computer. I told him to put it on because of the noise, but no- he knows better. It was completely clogged full of dust, and even cleaning it out it seems to be permenently damaged. I spent £159 on a new one for him, which is part of his Christmas and birthday present.

Still not really able to get out of bed, though I did try sitting on my computer for a bit. Feel terrible for doing so- can hardly control my arms and hands right now, which is making typing this difficult. Evenings are always my best time though.

I really need a bath, as I’ve not had one since last Sunday. My hair is probably a complete mess, as that’s not been touched for days, though it is in a French plait which should help a bit. I have a tangle teezer that should make it easier to sort out.

Aim for tomorrow- to be well enough by 6pm to get a bath so I can get clean. I also want to wear my Diablo 3 t-shirt as it’s awesome and I love it.

Just a Short Post

I am ill. By that I mean that to type this I have the brightness on its lowest and I’m wearing sunglasses to try and tolerate the light. Even when doing nothing I feel horrendous, with massive amounts of pain, and any form or movement or stimulation makes me feel a lot worse. Johan clicking his mouse (with his quiet mouse) sounds like a gunshot to me.

Hopefully I will be doing a bit better soon, so long as I keep taking my meds and get plenty of rest. In the meantine, I want to kill whoever it was that gave me this cold.

Edit: I thought I’d uploaded this post on the 4th, but obviously not. I’ve reset the date to make sure it’s in the right order.

Being Ill Sucks

Went to sleep about 1am this morning, and woke up about 1pm. So that’s another 12 hours sleep. My alarms did go off, but I was too tired to wake up beyond just turning them off.

I have a cold. I’m not sure how I got it, as Johan doesn’t have one, but it’s possible one of the carers gave me it. My body is hating me because of it- I tried and failed to go on my computer, nearly fell of the toilet (lovely Icelandic carer told me off for even attempting to go into the bathroom while this ill) and then did fall off the commode as I tried to get on it by myself. My body is very floppy, and my legs just won’t hold me up. I’m also very dizzy, so it feels like I’m on a boat while lying in bed. Of course I also have the normal cold symptoms of a blocked nose, sneezing, a sore throat, and a high temperature, though ibuprofen is helping with that.

I have a doctors appointment next Thursday, to discuss transport to hospital and something for the muscle problems. I’m hoping I’ll be well enough to get there, as the way I’m feeling now I won’t be able to. I don’t want to have to ask for home visits, as I know much time it takes out of a busy doctor’s day, but at the same time if I get much worse I won’t have any choice 🙁

I’m trying to remain positive, and remind myself that there are those who have M.E. who are doing worse than I am, but it’s hard when I’m in a lot of pain and I can’t even sit up in bed without the world spinning. Last night I got to watch Frozen Planet though, which meant I got to see lots of penguins 😀 That made me happy.

On NaBloPoMo, M.E. and Generic Stuff

Yesterday’s post was important, as not only was it the first day of NaBloPoMo but it was Autistics Speaking Day, so I got to talk about how autism affects me. Lots of people read it, and some even commented, so thank you very much.

Today I wanted to blog about M.E., sorta the same post as yesterday only relating to how M.E. affects me. Unfortunately, I’m too ill to do that today, so it’s been postponed until I’m feeling better. Even though my computer is now very close to my bed, I’m not well enough to go on it again today, and shouldn’t have earlier as I’ve made myself worse. Silly Danni.

I have mostly sorted out my sleeping pattern. Kept pushing back my bedtime, and last night it was 7pm. I then slept for 17 hours, but I think that was mostly because I’m more ill today- I’ve been overdoing the sitting up the last few days. My body has lovely ways to remind me that I’m ill, which includes massive amounts of pain that the tramadol is only slightly helping, double vision which is making typing this rather interesting, exhaustion that means even turning over in bed feels like too much effort, dizziness to the point where I feel like I’m on a boat when I’m just lying in bed, and increased light sensitivity which means I’ve had to ask Johan to turn the main light off.

All of those could be worse though- and have been. Although today is a bad day, it’s nowhere near a very bad day. Okay, it sucked not being able to have a bath as I can’t even get into the bathroom, and I can’t go on my proper computer, but I’m well enough to tolerate the light on my tablet with the brightness turned down to low, I can eat a bit so long as it’s finger food, I can type this and I can watch the lights on my colour changing candles.

Today I got my appointments through about getting my bad teeth removed. The pre-admission assessment is in about a fortnight, then the actual removal is in a month. I’m getting it done under a general anaesthetic as the sedation didn’t work earlier this year. I’m mostly worried about how I’m going to get there, so I’m going to see my GP (hopefully on a better day than today) to ask him what would be best. I also need to ask him if there’s anything I can take for the muscle spasms, as they were what caused my sleeping pattern to be so messed up when they kept me awake for about 10 hours after I was intending to sleep. I’m also a bit frightened of hurting myself when they launch me off the bed. My legs are already covered in bruises, and I don’t exactly need to add to them.

I need to rest now, so will leave it there. I’ll be blogging again tomorrow, and every other day this month, so long as I’m conscious at least part of the day 🙂

Looking Out Of The Window

The update post!

November (tomorrow since it’s Monday already) is NaBloPoMo. I am planning on taking part this year, even if I only manage to post a video or a picture everyday. It should give me something to do 🙂

Blizzcon was awesome, though I did get payback from watching a lot of television (live stream). I’m very excited about Mists of Pandaland, can’t wait to be a Pandaman Monk and also will be buying the collector’s edition of Diablo 3. I’ve also subscribed to the annual pass for WoW as I should be continuing to play, and I pay every 6 months anyhow.

I’ve spent a lot of time in bed as normal. On Thursday I went to my hospital appointment, where I didn’t see my consultant 🙁 but did see a member of his team. She’s going to write to my GP I think, and doesn’t want me back until I improve, because going there made me very ill. She is happy with this because I have such a decent GP, and there’s not much they can do there that my GP can’t anyway. If I improve enough, I’ll be going back in about 3 months.

I have given up keeping the activity diary for a few days. It’s been pretty freeing, actually :p The doctor at the hospital wants Johan to call my physiotherapist about me not being well enough to travel to the CFS clinic, to see if they can see me at home or something. I haven’t been able to figure out baselines at all, though I do know roughly how much I can do on a good day and a bad day. The problem is on a bad day, I can do pretty much nothing, and spend most of the day with my eye mask and ear defenders on, maybe occasionally taking them off to stare at Twitter. I will work on it this week, as I’m meant to be seeing them on Thursday. I will also start filling in the activity diary again.

We’ve also rearranged the living room. We originally shoved the spare bed in the corner after I’d been sleeping on the sofa for a couple of weeks because I was unable to get upstairs, but I was hoping to improve so it was only meant to be a temporary solution. As it is, I’ve got worse instead of better, and acquired an awful lot of disability equipment that needs to be in here, so we’ve moved things about. We’ve removed one bookcase completely (did have Star Trek videos and DVDs on- I’m not well enough to watch them), put another behind the door, moved my bed where my computer desk was and that desk where my bed was, and moved the other computer desk around so there’s room at the bottom of the bed for stuff like the commode. I’ve also swapped computer desks with Johan, so his is near the door and mine is near my bed so I don’t have to crawl to get there anymore. We’ve still got the sofa to sort out (it’s been moved slightly for the computer desk, but otherwise is pretty much in the same place- but it’s been turned into the dumping ground for everything while we’re moving stuff) and I want my small bookcase from upstairs to put next to my bed as a table, but it’s getting there. I’ll take and post photos when we’re done, which should be tomorrow.

The main advantage of moving everything is that I’m no longer near the living room door, the wall next to the pub and above the gas pipe, so I should be disturbed a lot less. It used to be when I was asleep that I was the first thing you’d see coming into the living room, so people mistook it for a bedroom :p Now if I’m not well, I’m in the corner so people coming in will disturb me less. Also not being on top of the gas pipe means not waking up to vibrations whenever a carer runs the hot water to do the dishes or similar :p I can also see out of the window, so I’ve been able to see some awesome sunsets.

My plan for today is to wake up and get up about 10am, to try and sort out my sleeping pattern. I’m guessing it will make me feel pretty rough for a bit, as I’ll be tired, but trying to go to sleep earlier hasn’t worked yet, so I’m going to try waking up earlier instead. Johan doesn’t think it’ll work but we’ll see. Johan needs to call the physiotherapist about Thursday, and it’s Halloween so I’ll be asking him to see if he can find some face paints (I want to be a zombie :p) and we’ll be carving the pumpkin I bought last week. I’m also thinking of asking him to find some halloween treats in the shops, and maybe try watching a scary film I’ve seen before (though that may be a bit optimistic).

We also both need to make GP appointments, but that’s not overly urgent. I want to see if there’s anything he can suggest for the muscle spasms, as them keeping me awake is what made my sleeping pattern so bad to begin with. They’re also quite scary as if I’m lying on my back they can launch me off the bed. Johan and I think we may have to consider something to stop me ending up on the floor if that happens, though I don’t really want to feel like I’m in a cot. We’ll see.