Category: World of Warcraft

Danni

Sleepy Danni

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

I am still sleeping lots. Johan is taking advantage of this to go out in the afternoons when I am sleeping. He went to see The Avengers which he says is very good. I would like to go see it myself but that is not going to be possible unless I improve lots 🙁

I have managed a bit more computer time where I played World of Warcraft, but both times I have overdone it and had to lie down very quickly. This morning I had a bit of a moan about not being able to do what I want to do because I’m too ill, and Johan was very understanding. I also felt very guilty as I know that there are people who are doing loads worse than I am but Johan told me that was silly and that no-one should have to deal with M.E at any level. He is right.

In World of Warcraft Danni got a Darkmoon Cub this morning so that is good. I am trying to get 150 pets on her before Pandaland comes out, and I currently have 131 I think. If I get close to the expansion and I’m not fully there I will buy some on the auction house (I already have most of the cheap ones) and there are also some real life money ones that I can get as well, and I think Johan was wanting to get me one as a present. There are some Argent Tournament ones I still need to get and some Horde ones that I could maybe get using Catalia and Johan’s account. I shall look into it and see what I can do.

M.E awareness week starts tomorrow so I’m hoping to do some blog posts for that. I’m not sure exactly what yet but I will have something for M.E awareness day on the 12th. I was hoping to blog everyday during the week but that may not happen if I sleep too much or am too brain foggy. Doing these types of blog posts doesn’t take much mental energy compared to writing about important things where I have to make sure I get facts right and stuff.

My trousers were not delivered on Thursday. This made me angry and upset as they didn’t even try to deliver them (they claimed to have left a card but none could be found, and our doorbell is very loud and wakes me up so I know they never rang it). I sent the delivery company an email saying this to them and they delivered them on Saturday instead. They are very nice though a little bit short when sitting down. That is okay though as I’ll just wear some nice socks with them 🙂 We have worked out to get the proper length trousers for me sitting down I need 40″ inside leg which is very long. I may get one nice pair tailor made at some point when my weight has stabilised a bit more so I have some proper smart trousers I can wear. Until then though my new purple ones are awesome and not scratchy 🙂

I want a television in my bedroom. Currently am not well enough to lie on the sofa (tried- it made things worse) but I can manage some television watching so when I can I’m watching some on my laptop, but as my overbed table is still not here (our old next door neighbours have kept hold of it and other stuff for us- we’re trying to organise getting them here) it is a bit awkward on the bed as it is too heavy for me to have on me for more than a very short period of time. Of course a television for my bedroom is quite low priority but it would be nice to have. I already have a unit that it will go on and know where to put it. Johan is also agreeing that I should have a television in my bedroom since I spend so much time in here. What I like to do is have the television on with something that’s not too difficult to cope with, like reality shows (though not singing ones) and then be on twitter or something like that on my tablet as well as I cannot concentrate that well. I also want to watch some films again at some point- the X Men films, try the Star Wars films to see if I like them this time, I want to see Happy Feet 2 and the Hunger Games once it is out on DVD since I won’t get to see it at the cinema.

I am in a lot of pain despite taking two tramadol (I did manage a short time with just one but then I overdid it on the computer- silly Danni) so I think I’m going to try and nap as I am also very tired. I just hope the nightmares aren’t as bad as this mornings.

Danni

1 Penguin, 2 Penguins, 3 Penguins, 4, Purple Penguins, Sparkly Penguins, Flappy Penguins, More.

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

Title has nothing to do with anything other than my love for penguins.

My sleep is still all over the place, but I’m mostly in hypersomnia mode. Having long naps on top of long sleeps. This is good as it is what my body needs to do to get over the relapse- every sleep is another step towards being just that bit better.

I am frustrated as pain levels are still higher than normal so I’m still taking double tramadol. The double tramadol is working fine so I should be happy about that, but it’s just a reminder that I’m still doing worse than I was a few weeks ago. Also when I take two tramadol I feel all woozy and dopey and sleepy, which doesn’t happen when I only have one, so there is that to think about as well. My current pain levels though require it.

Johan is regularly brushing my hair for me. This is nice and good- something simple that makes my life more pleasant and also lets me be close to him. It’s also letting me practice sitting up unsupported- my back muscles are very weak so sitting on the bed with Johan behind me is a safe way for me to do so without worrying I’m going to collapse and hurt myself. Luckily I’ve not even come close yet 🙂

Yesterday I managed my computer for a bit (probably too long) and went into World of Warcraft and did all the orphan quests on Danni. I now have all the pets (including the new ones from last year) and some pet biscuits from the Northrend one 🙂 If I get the chance I’d like to do them on Tiarna as well (which will be quicker as she’s a Mage) but it’s not essential. I also did our monthly budget for May so I know where we stand money-wise. Things are a little tighter than I’d like this month (a few one-off things that are coming out) but we still have enough slack in the budget for anything I’ve forgotten or any emergencies and stuff- which is good as I have a feeling the World of Warcraft subscriptions may be coming out. I will have to check now 😛

Just checked my account- mine is coming out 22nd May and I think Johan’s is only a couple of weeks after, so I will need to add them to the budget. Not a problem though as I can afford them, but I won’t be buying the Collector’s Edition of Diablo 3. That is a shame, but I’m getting it for free with the WoW Annual Pass so it will only be the extras I’ll miss out on (I can technically still afford it but I’d rather keep the money for emergencies).

Also yesterday I bought a new pair of trousers. Since I lost loads of weight the only trousers I’ve been wearing are leggings (and a pair of too-short tracksuit bottoms inside), and the ones in my size that I’d bought by mistake ages ago are too scratchy for me to wear now (touch sensitivity is worse with the M.E so I can’t tolerate many textures, including jeans). The new trousers are a linen/cotton blend, which I normally tolerate rather well, and are purple 😀 They’re in the long size which is important as I have silly long legs (36″ inside leg when standing) and trousers appear even shorter when sitting down. I may show some sock but that’s okay as I have some really cool ones- rainbow ones or purple ones or penguin ones 😀 It will be nice to wear a pair of trousers again, as although I love my leggings and skirts sometimes I want to wear something different.

Apart from that I’ve mostly just been on the internet. A little bit of Twitter, catching up on blog posts in my reader, and in a bit I’m going to read more of the Blogging Against Disablism Day posts. I’ve also had lots of cuddles and handholds with Johan (I can cuddle a bit again! Yay!) which is really nice.

As I spend so much time lying down, I do a lot of thinking. Some of this isn’t important, some of it is stuff like ideas for future blog posts (I have lots of ideas, just not the spoons to write them yet as they need a bit of research), and some of it is reflecting on things I read. For Blogging Against Disablism Day Ballastexistenz wrote two blog posts about caregiver abuse, which made me think a lot. I’ve been lucky to only be on the receiving end of the milder types of abuse (mostly neglect and refusal to take my wants and needs into consideration) though obviously that’s bad enough. The main thing I’ve been thinking about though was about the power imbalance between the carer and the person being cared for.

What is interesting is that I don’t feel there’s much of a imbalance in power between me and Johan. Yes, he’s physically a lot more capable than me and if he wanted he could use that against me, but when it comes to everyday life I feel equal to him. Some of this is because I do as much as I can- I manage most of the finances (Johan discusses them with me, and we come to decisions together most of the time, but the money goes into my account and I sort out where it’s going each month), I normally do most of the shopping order, and I keep track of what needs to be done and when. The other reason is that I know that Johan won’t ever deliberately harm me (I know he’s capable of it, but I also know he’d never forgive himself if he were too- he’s terrified of hurting me and I have to reassure him he won’t a lot of the time) so I feel safe with him. This means that it’s easier to accept him doing things for me, including very personal tasks involving washing and stuff. He always takes what I want into consideration, and I also care for him while he cares for me, in that I help him with the things he struggles with and try and help him with his mental health. I’d love to be able to do more, but with my M.E this bad that’s not possible at the moment. We also both spend about half the day telling and showing each other how much we love each other, which is always a plus 🙂

I think that’s one of the advantages of both of us being autistic. We’re very open and honest with each other, and we’ll talk about things (even if Johan does have to remind me not to talk too long as it makes me ill). If anything were to bother me with how he’s looking after me (or anything else, for that matter) I can and do talk to him about it, and if he’s able to change things he will. It’s the same for him- he’ll tell me if I’m doing something that bothers him, and if I can I’ll try and change it so it doesn’t anymore 🙂 I also have friends I can talk to if I ever want to talk to someone else about things, and I’m trying to encourage Johan to find his own support to help him cope with things (probably with the Carer’s Association, as it’s close by now). We both acknowledge that we need time alone sometimes, and even if it can’t happen physically then we can manage it by being in separate rooms and doing different things. As Johan respects my needs, I try to respect his as well. It’s also why respite and breaks are so important- it gives Johan a chance to charge his batteries, and it can help me as well.

I want to go to Edinburgh on holiday this year. Johan is also happy with this idea, so long as I’m well enough (I’m not currently, but I’m hopeful I will be in a few months). It’s harder to do a cheap break away now that I can’t walk at all so everything needs to be wheelchair accessible and things, but I’m very good at finding cheap train fares and cheap places to stay (I normally find Johan’s, and my siblings tend to come to me as well) so I’m sure we can manage it even on a tight budget. The main reason I want to go to Edinburgh is the penguins- there are so many at the zoo and it’s perfect for Danni’s. I also want Johan to do something he enjoys while we are there- not sure exactly what but I’m sure he’ll be able to find something (there’s a really cool museum we went to last time that may be good to go to again if I’m well enough). If I’m not well enough for it this year then there’s always next year.

The other places I want to go are London to the Mad Up in June (although that’s not looking very likely at this stage for me, Johan might be able to make it again though) and Leeds to see Johan’s family. I’m sure someone will look at this and think that we get far too much in disability benefits, yet most of it is because of money management and the fact we live very cheaply. Neither of us drink most than very occasionally, neither of us smoke, when I am well enough to go out we tend to go to rather cheap places and the only nights out Johan does are Barcraft, which since he doesn’t drink much works out very cheaply. I’ve said before that I feel rich on the amount of money we get in, though when compared to what we’d get if both of us were working it’s not very much at all.

Of course being stuck in bed most of the time means that now I have most of the equipment and things I need there’s less for me to spend my DLA on (other than the things like extra heating and a higher food bill as what I’m able to eat is changeable), but as soon as I become more mobile the costs will go back up again. If someone could cure my M.E tomorrow I’d grab it with both hands, and happy look for a job as there’s nothing I want more than to be able to work. It’s frustrating as I saw the perfect job for me advertised- working from home data entry, around 40 hours a week. Pay was a little more than minimum wage. And I’m not well enough to do it- if there was even the slimmest possibility that I could have managed it I would have applied immediately, but I’m just too ill. I don’t want to be on benefits but I’m grateful they’re there.

Since I’ve upset myself now thinking about all the scrounger rhetoric and stuff (I really need to stop internalising it) I think I’ll go watch some penguin cam – that always cheers me up 🙂

Danni

I Want a Bath

Autism, Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

I think I’m over the worst of the relapse. It never got as bad as in December, in that for some of the day at least I could tolerate small amounts of sound and some light with sunglasses on, and never stopped drinking, but I still was very ill and my arch nemesis the bed pan was brought back into action when trying to use the commode made me much worse.

There are some residual effects. Because I was moving much less than is normal for me (not that I move much anyway, but during the relapse I was only moving every 3-4 hours to adjust position as that was all I could manage) I got severe constipation. When I started moving again, so did my digestive system and the pain involved was immense, as it aggravated my hemorrhoids and I think I may have torn the skin as well. Luckily we had some Orajel in and that helped (I checked online that it was okay to be used that way). I think for next time I’m going to ask the doctor for some laxatives to be taken during a relapse so it never gets to that point (it was the same after the December relapse). Johan went to my doctors appointment on Friday and the doctor is going to ask the CFS Clinic about stronger painkillers for relapses, as I can’t have oramorph and tramadol just isn’t strong enough (for my normal levels of pain tramadol is my wonder drug- takes the edge off it so I’m able to do stuff and concentrate on things other than pain).

I’m still not great. On Friday evening I was able to go on my computer for a bit so played World of Warcraft, which made me very happy 😀 Unfortunately since then I’ve been stuck in bed again, as just been really weak and bleh. Luckily double tramadol is enough for my pain now so that is good. My sleep is also all over the place so that’s making things awkward for Johan.

The biggest thing I want now is a bath. Of course, at this new flat we don’t have one, and there’s still another 5 weeks to go until the shower is usable. I haven’t had a proper wash for nearly 3 weeks now, and my hair is also very greasy. I’ve been meaning to have one since Friday (which was the first day I was well enough to be able to tolerate one) but with me sleeping all day and Johan having brain explosions we’ve not got around to it yet.

Having a wash for most people isn’t a big task, but for me it’s one of the harder things to do. It’s one of the areas that autism and dyspraxia makes things harder than it would be if I only had M.E. Because I’m touch sensitive, being washed is very overwhelming, so I can only do it lying down (that’s been the case for about a year now, even when I was able to go out and about). Luckily my smell sensitivity isn’t as bad as it can be, so I when I am washed I use some things with nice smells, such as my cherry almond shampoo (reminds me of bakewell tart) and coconut body wash. When we had a bath I used to lie down in it using the reclining bath seat, have my hair washed (either by a carer before we sacked them or by Johan) then I’d soak in the water to clean most of me, using body wash on my face and selected other areas. As I wasn’t trying to wash everywhere directly, I was able to do the washing my body bit myself most of the time which gave me some independence.

Now we don’t have a bath, I have to wash in bed (there’s nowhere in the bathroom for me to lie down yet). We have a bed shampoo thing, so Johan washes my hair in that and tries not to knock the bucket over and soak everything on my floor 😛 After he’s washed my hair (I’m currently using a 2 in 1 shampoo and conditioner to make things easier) he washes my body. I normally do my face but the effort of that is normally me completely exhausted, so Johan washes the rest of my body. Some days I’m not well enough for all of it to be done, so he concentrates on the smelliest areas. Then I rest. Of course I’ve missed out the bit where Johan has to fetch everything and bring it into my bedroom, which sometimes makes his head explode. It’s a massive task and I try and have my hair washed every week or so (with a full body wash) but sometimes my illness gets in the way.

Because of the problems Johan is having, we’re getting carers in again. We’re giving up on direct payments for now as neither of us are able to manage the paperwork yet, so we’re going back to commissioned care. As we’ve moved to a more central area, there are more agencies covering where we live so it will be easier to change if things don’t go well, but the old care company don’t operate in this area so we’re hopeful. This time we’ll be able to tell them what doesn’t work for us and how they can help us from the beginning, so that should make things easier as well.

We’re also going to be having council cleaners to come in and help, which we’ll pay for ourselves. This will be a massive help for Johan as he’s just overwhelmed with everything at the moment. Our social worker had forgotten that we’d asked for this already but we’ve told him again so hopefully that will happen soon. I think if Johan knows that we’ll be having someone come in every week to do the bulk of the cleaning it will take the pressure off and he’ll be able to do some of the easier things himself.

Things aren’t brilliant but they could be worse. Of course I’m aware that just being eligible for carers makes me very lucky, though it’s because I’m severely disabled and if Johan breaks down again I’ll have to go into a care home, which is more expensive for social services and which we don’t want (my current care needs are classed as substantial).

Now I just need to improve. First step, having that wash (hopefully today), then maybe soon I’ll be able to go into the living room again. I have some orphans to take around Azeroth 🙂

Danni

Dead Drive

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

As I write this, my blog is not working. On Sunday night as I was typing up another blog post (which I may or may not post- some of it is no longer relevant) the server this blog is hosted on suddenly died. Some quick diagnostics showed that the main hard drive was dead (at least we think so- fsck on that drive would cause a kernel panic, which is not normal behaviour). Due to various issues it took until Tuesday to get a new drive in and the operating system installed. As my emails go through the server, we set up a temporary account so that my normal email forwarding would work again. Luckily it seems I’ve not lost many- most of the important ones from Monday and Tuesday seem to have come through, along with lots of unimportant ones from Sunday, Monday and Tuesday.

All the accounts on the server had been backed up on the 14th (the weekly backup), and I have a database backup for my blog from the 15th. Once the backup drive is reconnected all the accounts will be restored, and that will mean my blog should work again and I’ll be able to post this. That should happen later today (Wednesday). It’s very frustrating, especially since I’m no longer well enough to sort it out like I used to, which would have sped things up a bit (Colin working is one of the reasons it took a while to sort out).

Normally my email system makes me happy. Everything is backed up on the server, then it gets forwarded to GMail. So long as the server is working, this means I have two copies of all my emails, which means that should I lose access to my GMail account it won’t be anything more than a minor inconvenience. I may need to rethink it after this though. I don’t mind massively my blog being down for a few days, but I’m going to start keeping my own backups on my computer so if something like this happens again I’d be able to move it quickly if needed (which would also solve the email problem as I could set up the forwarding again from wherever I move it).

Apart from the server playing up so I was without access to my emails for a couple of days and my blog for three, I’ve been doing not brilliantly. I think I’m relapsing a bit. Monday I slept for 20 hours, which meant I didn’t eat. Tuesday I saw the nurse, but wasn’t well at all and couldn’t hold my head up, which was very uncomfortable (the harness held my body up so I wasn’t slumped anywhere near as much as I would have been otherwise). I’ve also been in a lot of pain- at midnight I took two tramadol (I can normally manage with one) but I’m still in too much pain to sleep, despite being sleepy enough. I managed to go on the computer for a bit on Tuesday evening to sort things out, do a Tesco shop and manage a couple of easy quests in World of Warcraft, but it was a bad idea really as I’m paying for it now. Before that I’d not been out of bed since Friday night, other than to see the nurse. I’m mostly bedbound again.

So, seeing the nurse. We’re about 10-15 minutes pushing distance (took about 10 minutes to get there, 15 minutes back) from the doctors surgery, and my head was floppy the entire time, which was very annoying and uncomfortable. It turns out the appointment was an hour later than Johan thought, and by the time I got there I was feeling really ill. The nurse was able to squeeze us in though so I didn’t have to go back. We went in and it was fine. She noticed my penguins and told me see had been to New Zealand and seen some there (good move- talking about penguins automatically makes me calmer) and then we went through some of the registration questions (Johan had told her about me at his appointment so I didn’t have to answer all of them). She told Johan off for not taking in his urine sample (he’d forgotten) but it was in such a nice way he didn’t feel bad. I told her my height and weight as they don’t have the facilities to do them if you can’t stand there, and she didn’t ask to take my blood pressure or anything probably because she could see it would have been too much for me. She told me if I needed a home visit at any time that is no problem (she knew from me having to cancel last week that sometimes I’m too ill to get to the surgery) and also said she’d ask about a wheelchair assessment for me. We likes her a lot 🙂 It definitely feels like a community doctors, where everyone knows everyone (the nurse said that she was glad I’d made it in because now she could put a face to a name and she never forgets anyone) and I was spoken to in a very warm, nice way that wasn’t patronising. When we got home Johan hauled me onto the bed as I wasn’t well enough to get myself on it (not paralysed for once, just far too weak and uncoordinated) and I rested for a few hours.

Johan also went out to get a blackout blind for my bedroom. If I am starting to relapse, then this will be important to keep my room dark and try and reduce the amount of symptoms I’m getting (I’ve had periods where I’ve had to wear sunglasses in bed already). It will also help as my sleeping pattern is completely broken so sometimes I can’t sleep until it’s already light. The blind is purple so will work well in my bedroom 🙂

There is so much I want to do. I want to read. I want to go out more. I want to be able to watch my favourite television shows, not just the ones that don’t overwhelm me or don’t require my concentration. I want to be able to tidy my bedroom 😛 Maybe one day.

Danni

I’d Like To Be A Tree

Computers, Danni, Gaming, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Danni in TGI Fridays

I’ve been out a few times in the last three weeks, and I’ve been further each time. On Monday I went into Gateshead to change my address with the bank, and also looked around the shops and bought a few items, including some long stripey socks 🙂 On Wednesday I was feeling really well for me (no payback!) so we went into Newcastle, looked around some shops (hunting for some Pony hair accessories, but we went into the wrong H&M and the right one was closed a couple of hours early) and then went to get some food at TGI Fridays in the Gate. It was brilliant, especially since I got to go on the Metro on the way home and see all the bridges lit up 😀

In my last post (if you could understand it :P) I complained that I couldn’t sit upright as I was too floppy, but otherwise was well enough to do stuff. We discovered that if we tied me upright in my wheelchair, I could go out 🙂 The first time we used a scarf, then when that worked we bought a proper torso harness which does an even better job. Because I no longer have to put all my energy into remaining upright, being outside, travelling and stuff is doable.

I’m loving how much I’ve improved in the last few weeks. I can go on my computer for as long as I want (was 7 hours yesterday, which may have been a bit too long as my bottom was very sore by the end of it :P).I can cope with noise and light even better than Johan a lot of the time. I’ve been able to reduce my painkillers as pain is mostly at a bearable level now and I can use distractions such as computer games to deal with it. I’ve gotten out of bed every day for a few weeks now I think. I can watch some television.

There are a couple of things that are frustrating me though. The first is that cognitively, I’m still not doing great. Conversations, reading lots of text, remembering things, concentrating on stuff- all are now more difficult than going outside. I got frustrated while in Newcastle because I wasn’t able to direct Johan where I wanted to go. The CFS clinic people came out a week and a bit ago, and the half hour conversation (with me lying in bed) absolutely exhausted me, and I got payback from it. Johan talks to me but half the time I don’t know what about, or don’t hear him because I wasn’t able to concentrate on what he said. I can’t keep up with Facebook and even struggle with Twitter. It’s frustrating as I feel like I’m not aware of what is going on because it requires more brain power than I seem to have. I even suck at playing World of Warcraft, and other people are noticing that I’m making stupid mistakes or losing concentration.

The second is that I still can’t care for myself. My hands are stupid- I can’t reliably hold things as they either cramp and spasm or they just drop things. This means I can’t wash myself, get dressed by myself, use cutlery properly, hold a cup most of the time, write, or do anything else that requires the ability to hold things reliably. I’m also really weak so repetitive movements such as those required to feed myself (holding things in my hands is easier than cutlery, though I still drop stuff) exhausts me to the point where Johan still has to take over at times. There’s a part of me that’s saying what’s the point in being able to go out if I can’t even look after myself.

Earlier I was on the computer playing World of Warcraft, doing Raid Finder with some guildies. Johan went to the shop to get some fish and chips (compulsory on Good Friday) and I was eating them when suddenly my body decided it had enough and I almost fainted. Johan got me on the sofa and I spent about 15 minutes struggling to stay conscious while my body jerked and spasmed, then it stopped and I was “okay” again, apart from being extra tired. It was as if it was saying no to sitting upright (not wearing the harness as the seat reclines and that’s normally enough for me), eating and concentrating at the same time. We initially thought it might be payback from Wednesday but as I recovered so quickly that didn’t seem to be the case. Was odd, but it’s not the first time my body has suddenly protested like that.

I want to read and comment on blogs more but that’s too much for my brain. In the meantime, this is the song I’ve been listening to lots (which is the inspiration for the post title) 🙂