Nov 222011
 

It is hard for me to write as my brain keeps getting stuck. I hear something and have to repeat it lots and can’t stop it. I am also having problems trying to translate stuff into proper English with proper grammar.

Not sure why I am having a brain stuck day, just that I am. I will sleep soon and see if that helps.

Today I managed to rename my main character in World of Warcraft, from Danní to Danni. This made me happy. Blizzard let me have the name as someone else had used it but only for a level 1 and it had been inactive for a long time. This should make things easier for my guildies and things, and it makes me happy to be able to have my proper name in World of Warcraft :D

I had jelly and ice cream. My mouth was being silly and forgetting how to chew, but that is not important for jelly and ice cream. It also kept breathing the food in instead of swallowing it, which is making my chest a little bit sore. I am not sure why it is being silly.

Tomorrow is hospital. I hope it is okay.

 Posted by at 6:01 pm
Nov 192011
 

Mixed day today. Went on my computer after waking up, spent too long on there (silly Danni) but painkillers helped with the pain and was in a good mood this morning. Johan also awake early (I woke at 4.30am, his alarm went at 6.30am) as he was going to Colin’s wedding today. After spending 20 minutes persuading him to give me cuddles instead of dozing on the sofa, he gave in and we both had an enjoyable half an hour on my bed. Then he got me dressed (Diablo 3 t-shirt for the win!) and went and sorted himself out.

We hadn’t arranged anyone to look after me as I had been hoping to attend the wedding, and when it became clear I was too ill it was a bit late to ask anyone, and we also figured that as the carers would be coming and he was close enough if there was an emergency, we’d be able to cope. He left for the wedding at about 10am, when the carer was due to arrive.

She didn’t turn up. I sent Johan a text message at 10.55am (wedding was due to start at 11am) to tell him, so he could contact the agency, which he did at 11.30am (after the ceremony was finished). She eventually turned up at 11.50am, but didn’t come in, only knocked (we leave the door unlocked for the carers so they can come straight in) forcing me to crawl to the front door, and causing me massive amounts of pain. She helped me back into bed (after fetching my wheelchair from the living room) then kept asking me lots of questions, that I was in too much pain to answer. In the end I had to ask her to leave, as I was scared (I was close to melting down at this point). I asked Johan to come home, and he did, missing the wedding meal. He phoned the agency and told them we’re not happy, listing all the reasons.

Soon after he arrived back home, the post arrived, including my corset. He helped me get it on, and I was able to sit up straight for the first time in a long time :D It’s also beautiful, so I’m really happy with it. I’ll need to figure out lacing it, and what to wear it with, but I already love it and I’ve only worn it for 20 minutes. I may use it to be able to sit up to get to the appointment next week (which is on Wednesday, as the letter arrived today). I’m still worried about it, but the corset will at least prevent me from flopping (and it’s comfortable to lie in, as well).

I’m now planning on sleeping, but will have to ask Johan if he wants to go to the wedding party thing tonight. I’m still in massive amounts of pain, and I’m hoping for the least amount of payback from today (I’m still suffering the payback from last Wednesday- mostly more pain than normal and less stamina for stuff, and needing to rest more).

 Posted by at 3:55 pm
Nov 112011
 

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 :D

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.

 Posted by at 11:33 pm
Nov 072011
 

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 :D

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 :D

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 :)

 Posted by at 11:50 pm
Oct 202011
 

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! :D 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.

 Posted by at 2:06 am
Oct 142011
 

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.

 Posted by at 2:49 am
Aug 012011
 

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.

 Posted by at 10:29 pm
Jul 212011
 

Stripy Socks

Didn’t sleep much last night, as in too much pain (toothache on top of normal pain in arms and legs) and wasn’t well enough to go across the room to find painkillers.

Had to be up early this morning because I had my appointment at the CFS clinic. Threw up on the bus (I was prepared with bags, luckily) and felt really rotten travelling, but wasn’t too bad when I got there. They wanted to go through all my history, and there’s a lot of it, so I have another appointment in a month.

The photo was taken on the way back- the man sitting near us was wearing a shirt, tie and smart trousers, with colourful stripy socks :D It was good.

Went to the MetroCentre on the way back, heading to Asda. Found (and bought) a new penguin!It’s one of the ones from Madagascar. In Asda bought a new pair of wellys (they’re a size 9! and purple! and girly!) and a new dress that should be long enough to wear by itself :P Also got a salad, cherries and shortbread, but was feeling really ill by this point so we paid and went home.

Went for a nap when we got back, as I was knackered and in agony. Woke up and took painkillers, then had a bath. Also cancelled carers as I was in too much pain to deal with the one I don’t like.

After my bath, lay on my bed for a bit, then went on my computer to do dailies. Completed the Filling the Moonwell part of the Hyjal dailies, and did an epic storyline to kill Leyara :D Also was sad after doing the locket quests :(

Still in a lot of pain after full dose of painkillers. I need to make an appointment with the dentist (though I’m waiting to have the tooth removed) and see the doctor about the nausea and vomiting as it’s getting a bit difficult to cope with now.

 Posted by at 10:10 pm
Jul 172011
 

IMG_20110717_232551

Woke up just as favourite carer was arriving this morning. She went and did stuff in the kitchen, then when she came back I was alive enough to get up and dressed and stuff. Did my dailies in World of Warcraft, then messed around for a bit.

Also this morning I tidied my desk, and started tidying the rest of the living room. Hopefully tomorrow it will be done enough to take photos of :P

Favourite carer came back at 6pm to help me with my bath. Had a nice long soak, then got out, lay on the bed for a bit then got ready for bed.

This evening I had a couple of dragons to kill, so logged back into World of Warcraft to work on Nefarian. Got a bit upset because I was struggling madly to try and heal the Onyxia/adds tank, but once I swapped to the Nefarian tank it was a lot easier for me. After about 3 hours, we got him down :P I also got the achievement Defender of a Shattered World, so I have yet another title that doesn’t fit through doorways :P

I also ran another Troll dungeon, so I’m valor point capped for the week :)

 Posted by at 10:39 pm
Jul 172011
 

Google Reader

I have a lot of blogs and things to catch up with on Google Reader…

The payback from seeing Harry Potter is in full force. Been in a lot of pain and especially weak and floppy today. Was awake for favourite carer coming this morning, but was way too tired to get up. After a couple of hours I got up and did dailies and things, but I had to go back to bed afterwards. Napped for 6 hours this afternoon, then the carers came and brushed my teeth and things this evening, though one of them was knocking on the door so loud that I was extremely panicky.

Tried reading things on laptop in bed again, though not much is going in. Felt okay to sit up so levelled Elisaveta a bit.

Good news is Still Got Legs by Chameleon Circuit is now on Spotify, and I got my digital download link :) Nightmares is my favourite song I think, though I love the entire album. I recommend it to any Doctor Who lovers. If you don’t have Spotify, you can listen for free athttp://chameleoncircuit.bandcamp.com/alb​um/still-got-legs

 Posted by at 12:18 am