Tiarna the Mage

Spent a lot of the night being very naughty and instead of resting levelled my mage, Tiarna. She’s currently about 78% of the way through level 84 and I hope to reach the level cap of 85 tonight. Other than that I’ve been sleeping, and sleeping, and a bit more sleeping.

Did receive my book 365 Penguins today though. It’s massive, and the box it came in was even bigger (yes. a book came in a box). I love it though- so many penguins 😀

Don’t seem to be getting any payback from yesterday yet. It may be I’ve got lucky, or it may kick in tomorrow. I’m hoping it’s luck.

Feeling Weird

Slept from 12.30am – 2.30pmish today. Johan was sitting on the windowsill when I woke up, waiting for his graphics card to arrive. It did so just before 6pm.

I’m doing my own, very vague method of activity management. It basically consists of trying to get up and sit in my computer chair every day, no matter how ill I feel. I’ve managed it every day for a while now, and it’s not making me worse, just means I sleep more. I try and get back off before I start feeling even more bleh, but it means I get to play some World of Warcraft everyday. I made my Worgan Mage Elisaveta into a Gnome called Tiarna. She’s so small and cute, and best of all she doesn’t make any annoying sniffing noises 😀

I feel weird. The nausea has been worse today, so I’ve been taking the antisickness tablets, which haven’t helped much. My brain has been all over the place, and the pain has been bad even with the painkillers. I “lost” a few hours after waking up just because I felt too rotten to move.

I’ve ordered some stuff from Amazon to be delivered tomorrow, and done a grocery shop with Sainsburys to be delivered on Wednesday. Nothing too amazing, though we have three different types of roast-style meats to try (they were 3 for £10). They also do pre-prepared sweet potato and butternut squash, so when they arrive I’m getting Johan to make me my orange soup 😀

Did get dressed today, in my favourite Diablo 3 t-shirt and a denim skirt. Johan plaited my hair. It’s very loose as he’s not got the hang of keeping hold of all the hair while plaiting it, but it’s not too bad and he’s learning 🙂

Excited for Blizzcon

Had a rough time recently, but slowly coming out of it. The nausea is nowhere near as bad now, and I’m back to eating mostly normally. It was probably made worse by overdoing it (going to the MetroCentre then the doctors at the beginning of last week) and since I’ve not been out since then and resting and taking it easy, it’s started to behave.

I do have a cold, which is trying to make me feel miserable, but ibuprofen is taking care of that. On that subject, why does children’s Nurofen taste disgusting (it’s a horrible orange flavour) while Calpol tastes nice? I’d have Calpol instead but paracetamol gives me a horrendous headache. I also get the Nurofen on precription, which since I don’t pay for them makes it cheaper.

I can manage about 3 1 hour sessions on my computer without getting any extra symptoms or getting any payback. I think I’ve found my baseline for that activity, anyway 🙂 Now to work on all the others. I have found talking to my social worker is exhausting and gives payback, but that’s a necessary activity, unfortunately 🙁

I’m getting a bath lift! 😀 The occupational therapist came out today, and didn’t even need me to get out of bed :p He asked Johan some questions about me (even if he did add nearly a stone to my weight. Humph.) and has recommended a reclining bath lift. He said that normally they’d start with a bath seat, but since my main problem now is that I have very little upper body strength (or lower body strength) the bath lift is most suitable. I am looking forward to having baths again, without having to fall in and risk getting stuck. They’re awesome for pain relief, as well.

Blizzcon is on Friday and Saturday, and I have a virtual pass so I’m looking forward to watching that. I get access to the videos for a bit after they’ve been streamed, so if I miss something because I’m ill I can watch it when I’m able to. I want to see what the next expansion is for World of Warcraft, and the Foo Fighters are performing 🙂

I am starting to adapt to being this ill. It’s hard, but I’m learning to ask for things more so I can conserve my energy for more important things. I’m also asking Johan to heat up my wheat bag and penguin to try and ease the pain when it’s only in one limb, as heat does help and means needing to take less painkillers, which is always good.

We’ve had to turn the heating on. The last couple of days have been freezing. We turn it off a couple of hours before the pizza shop opens, and turn it back on again a couple of hours after it shuts. Luckily we can save money during the period the pizza shop provides our heat. I’ve also noticed I’m more sensitive to the cold this year- this is probably just because I’m a lot more ill. Still, my DLA is to cover disability related expenses and extra heating bills is one of them.

My doctor has sent off a letter to the council about moving to more suitable housing, I think. At least, he’s sent back the letter I gave him telling me I needed the doctor to write to them.

I’m also sorting out direct payments. Currently looking for someone to work as my personal assistant twice a day. Unfortunately I don’t know anyone immediately who can do it, but I’ve asked on Facebook and will also be advertising in the Job Centre and stuff. This is something that living so far out will probably make harder really though, as it’ll only be a few hours a week and unless the person lives in the area there will be quite a travel to get here. I’m hopeful though, and we can be relatively flexible regarding hours if a college or university student wants to do it. The paperwork currently looks like a nightmare, but I think that’s just because I’ve been so ill the last week or two. It will probably be less scary when I look at it when my brain is partially functioning.

Long blogpost has turned out long. Johan is amazingly still awake- I think he’s getting ready for Blizzcon. Lovely Icelandic carer is due in about 6 hours. That will be interesting if we’ve both not really slept (I’m currently sleeping for about 9 hours in two blocks of between 4-5 hours each, one in the morning and one in the afternoon/evening). Still, I’m not too concerned about it as I am sleeping enough, and if it becomes too troublesome I may ask for a very short course of sleeping tablets just to reset it.

Ambulances and Doctors

Saturday night I started experiencing some strange chest pain. It felt like someone was stabbing me every time I breathed. As the pain continued to get worse, my normal dose of tramadol wasn’t touching it, and because it was unusual for me, we called an ambulance (we would have called NHS Direct but as it was chest pain they would have just called an ambulance anyway).

The ambulance men were brilliant. I’ve no clue what they look like, as I was having a bad day, was very noise and light intolerant, and was wearing my eye mask and ear defenders (this is also why I’m calling them ambulance men, as I don’t know if they were paramedics or technicians or one of each). They understood why we called them, and also realised that going into hospital would not be a good idea unless necessary, so they performed all the tests to rule out anything serious. They asked questions about my M.E. and autism, reassured me as appropriate (both that I was okay and that it was right to call them out) and also cracked a few jokes (then told me not to laugh as it made the pain worse).

Once they’d done everything they could, they called the urgent care team (who are nurses) to ask them to come out to see if they could figure out what it was and how to deal with it. They checked to make sure I didn’t have a chest infection or anything like that, and concluded I’d probably pulled a muscle in my chest at some point, and told me to take more tramadol (double my prescribed dose) as they couldn’t prescribe anything stronger themselves. All very useful, and the extra tramadol knocked me out so I was at least able to sleep through the pain.

Johan coped remarkably well on Saturday night, but unfortunately he wasn’t doing overly good mentally. Sunday I spent a lot of time trying to reassure him, and he was unable to distract himself as he normally does. On Monday, I went with him to the MetroCentre as mentioned in the previous post, even though I wasn’t well enough, because he wanted to go and couldn’t do it alone.

Tuesday we both saw the doctor. He swapped my prochlorperaine to a form that dissolves next to the gum, as my nausea and vomiting got so bad I couldn’t keep my tablets down. It works well, except on days where I wake up with severe nausea and end up vomiting before I get the chance to take it. I’ve also been given permission to double my tramadol as I need to, which is useful.

For Johan, he took him off sertraline as the side effects weren’t helping things, and put him on mirtazapine instead. Previously Johan has said he didn’t want to go on it because of the weight gain, but he didn’t protest, and I wasn’t going to as if any medication is going to help him, that one will. He also referred him to the crisis team, despite us not being too happy about it, because of how quickly he’d deteriorated and his risk of harming himself.

While in the chemist waiting for our prescriptions, I picked up a few items I wanted to get (makeup brushes, wipes and gloves to make cleaning the commode and bed pan easier, my favourite shampoo and conditioner, some new hair bobbles as most of mine had broken). We also went to the bakery to get some lunch and to another shop for some sweets on the way back, as I like to take advantage of being out when I can. He was still bad on Tuesday evening, but he fell asleep not too long after taking the mirtazapine.

Wednesday morning the crisis team came out. For once, they didn’t make things worse. They can’t see a role for themselves as most of Johan’s anxiety and depression is being caused by the problems with the carers, but they are also sending out some information about advocates for Johan as I’m not well enough to do it for him any more, and contacted my social worker in an attempt to see if he can fix things with the carers. Johan then fell asleep again (mirtazapine is very good for sleep, just sometimes it’s too good) and I dozed off not too long after, as the crisis team exhausted me.

My social worker turned up in the afternoon, to the surprise of both of us. Apparently Johan had been told, and he thinks he told me, but I had no record of it so either he was mistaken or my memory was being lousy :p The social worker realised it wasn’t a good time, so rearranged to come back the next afternoon. By the evening Johan was doing a bit better, and really craving sweet and sour chicken, so went out to the Chinese to get some. He also didn’t need anywhere near as much reassurance as he had been, which is making me think the sertraline was making things worse.

Thursday was a quiet day for me. I didn’t get to sleep until 5am because of sleeping in the afternoon and things being on my mind (which I tried everything to try and solve, including typing them all up, but it didn’t work). When I woke up I was very nauseous, and ended up throwing up before being able to take the prochlorperazine. I did apply some makeup, but took it all off because I didn’t like wearing it when being sick. My social worker arrived at 2.30pm with a woman from A4E, to talk about direct payments. It was fine, apart from being exhausting, and I was also able to tell him things still aren’t improving with the carers and ask about respite for Johan. Ended up falling asleep again afterwards, while Johan went to the MetroCentre (by himself) to get his iPod repaired, which they very kindly replaced for free. Woke up this evening, went on my computer for far too long to level Elisaveta (I got her to 82) then have been resting in bed and chatting to friends in IRC all night.

I have messed up my sleep patterns, but hope to get them back to normal over the next couple of days. We have no appointments until Monday (when Johan sees a psychiatrist) so will be able to work on it. I also still need to figure out my baseline for activities, and have a plan which requires buying large quantities of non-specific, pretty greetings cards. I’m also two weeks behind on Waterloo Road, and trying to get caught up on NCIS whenever I’m feeling well enough to watch a TV programme. Plenty of things to do, just not enough energy to do them.

Project 365: Day 45: 1st August 2011 – WoW Insider

WoW Insider

Was just about awake when favourite carer arrived this morning, and after she’d done stuff in the kitchen was awake enough to get up and dressed.

Spent most of the day in bed again, though I was up for bits playing World of Warcraft. Also have been catching up with blogs- the photo is of a WoW Insider post that mentions my realm, EU-Quel’Thalas. Arkenstone is a troll, yes, but he’s funny and I quite like him.

Tried to watch The Ugly Truth, but it wasn’t funny so turned it off after about 20 minutes.

It’s way too hot, but going to Leeds tomorrow. A bit anxious as there’s a bit missing from the head rest of my wheelchair so I’ll have to try and keep it up by myself while travelling. It’s been really floppy so this is going to be interesting.