Category: World of Warcraft

Danni

Goodness

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Penguins!, Physical Disability, Real Life, Second Life, World of Warcraft
Penguin and Penelope. Penny's wing is bandaged.
Penguin and Penelope. Penny’s wing is bandaged.

I’ve had a rough day. My prescribed Fortisips arrived and though I was meant to be prescribed only chocolate and vanilla flavours, the first one Johan gave me was Fruits of the Forest. Which my body reacted to as badly as it did the Skittles milkshake and strawberry milkshake I tried, confirming that I can’t have fruit flavoured heavy drinks now (I can manage fruit squash okay, but pure fruit juice, smoothies and fruit milkshakes cause worse nausea; and burn my throat and taste disgusting when they’re brought back up). I also had my body attempting the final part of digestion, which had me shaking, sweating, curled up in a ball and at one point crying from the pain. It lasted several hours, and I’m grateful that I didn’t have to attempt it on a bedpan or toilet as though the clean-up sucks being able to lie on my side did help a bit. I think the worst of it is over this time.

Penelope’s wing got burnt in the microwave 🙁 I performed surgery (cutting away the burnt fur/feathers and removed the burnt stuffing) and have used a part of a dressing to stuff her wing and have bandaged it up. We’re going to look into a skin graft but even if that is possible her heating days are over. I’m giving her loads of cuddles and she’s asked me to find one of her siblings to do her job. Unfortunately the Intelex website is out of stock of Penny’s sisters, but I’ve emailed them asking when they’ll next be available and if that fails, I’ll look elsewhere. She might be a disabled penguin now but I still love her very much.

Despite all that, I’m happy. I believe that every person has at least some goodness in them (even Tories, though it can be hard to see there) and my friends show me their love and goodness all the time. I have Johan, who does everything he can to make me feel as comfortable and well as possible (and didn’t even complain about the messy clean-up earlier). It can be easy to think everyone and everything is bad when that’s what must of the news concentrates on, and there are a lot of bad things that happen, but there are people trying to make the bad things less bad and do more good things. One of Nerdfighteria’s aims is to reduce world suck (the other main one is DFTBA – don’t forget to be awesome).

I might blog about the downsides of having severe ME (and like a lot of disabling chronic illnesses it sucks a lot) but part of me learning to adapt to it was to try not to dwell too much on it. Blogging and tweeting helps me with this- once I’ve written about it it frees my brain to think about other things, and knowing that there are people who care really helps. Having ME has opened me up to a whole community of good people I proudly wouldn’t have met before, some of whom I now class as friends. I still want a cure and wish my friends weren’t suffering, but I’m grateful for what it has brought me. (I try and keep out of the politics side of ME for the same reason I limit my intake of bad news- there’s nothing I can safely do to help and there’s a lot of (mostly justified) negativity that makes me more ill.)

I’m also grateful to be Autistic. Unlike the ME I don’t want to be cured, despite the difficulties it can cause. I like who I am and I wouldn’t be the same person without it. I discovered Second Life through the autistic community, and without that I would never have met Johan. Autism doesn’t make me ill- it means I think and process stuff differently, but it’s not broken. I have super senses- it may mean I can’t tolerate loud noises or certain smells but it also allows me to enjoy lights and sparklies in a way I can’t explain. And every time I see a penguin it makes me very happy. The autistic community has also introduced me to some awesome people I otherwise wouldn’t have met, and learning there were people like me has been very positive.

Lent begins tomorrow. I’m not giving anything up for it this year- if I were to give up something food related I think my dietician would kill me, and I’m not sure what else I could give up. Instead, I’m going to try and do nice things for people. After I wake up I’m going to make a list of the specifics of this, but some ideas I’ve had are writing a note to someone on Post Pals, sending someone who needs cheering up a small gift, and seeing if I can help someone with one of my skills (I might not have many I can currently use, but there are still some).

Good things that have happened today include playing some World of Warcraft, Johan and the other raiders in my guild managing to kill Heroic Paragons, managing to install a new beta version of Paranoid Android on my tablet (accidentally wiping it in the process, but it needed it and I’d backed it up yesterday), cuddling my Penguins, making Penelope feel better, getting clean, dry pyjamas on, joking with Johan, talking about interesting things with my guild in Mumble, playing with the Google Now speech recognition stuff, and writing this blog post. That’s quite a lot considering I’ve been awake less than twelve hours and haven’t got out of bed 😛 Time to sleep now, and that’s good too.

Danni

Busy March

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

Although the beginning of the month took me by surprise (yesterday I woke up late after a 16 hour sleep and was convinced it was still February until I got my Brew of the Month club mail in World of Warcraft) it’s shaping up to be quite a busy one for us.

Becca is staying with us next weekend as she’s going to Newcastle Film and Comic Con and we live much closer than she does (she lives in the middle of nowhere with a rubbish bus service and worse internet connection, we’re quite central with decent buses, walking distance from Newcastle if necessary, and awesome internet). I wish I could go with her as it looks to be amazing but will have to experience it second hand. Her staying here should make that easier though 🙂

Vicky has invited Johan to go see the ballet in Leeds the week after, and he’s going to go down a couple of days early to see his parents and friends and so on. Becca has kindly offered to look after me so I don’t have to go into a care home 🙂 After the ballet Vicky is going to come back with Johan so I can see her before she goes gallivanting across the world. It’s been a while since I last saw Vicky in person so it will be awesome. She’s a low energy person so I’m hoping to be able to chat while she’s here 🙂 (Different people require different levels of energy for me to be able to be around them- it’s not a bad thing, or related to how much I like the person, just something I have to take into account when it comes to visits and things.)

The week after that I have the CFS team coming out to see me. It was meant to be to discuss my visit to see my consultant but since that hasn’t happened I’m not sure what we’ll be discussing. They are helpful but exhausting so that is also a big event in my calendar.

I am not doing amazing at the moment. The curtain has been up for a while and today I’m non-verbal again. Moving causes my back to go into spasm so I’m trying to remain very still. Johan has dosed me up on painkillers and an antiemetic to help with the nausea and heated penguins so I’m as comfortable as I can be, which is good.

Yesterday my carer went to Primark for me to get me a penguin onesie. Although I have one, it’s huge (XL men’s) and I wanted one that would fit a bit better. They were reduced and since she was going to be in there anyway she offered to get one for me. I love it and can’t wait to be well enough to try it on 😀

My World of Warcraft playing is good at the moment. Not well enough to do any raids (not even LFR) so I’ve been concentrating on levelling. My blood elf paladin Catalia is now level 73, and my recruit a friend character that I’m levelling with Becca, Caitlyna, has reached level 60. We’ll be going to Outland when we next play together 🙂 It’s interesting trying to teach her- she wasn’t doing well on DPS in dungeons (she was asked about it during one of the runs- once I explained she was new they were fine though) and I discovered it was mostly because she wasn’t using charge (her character is a fury warrior). I’m also trying to teach her not to click the abilities and to use the keyboard instead, but she’s finding it difficult. Unfortunately unlike me she’s unable to touch type which helps a lot for being able to use key bindings without looking, but I’m hoping with practice she’ll be able to manage it at least some of the time. I showed her where the training dummies were in Stormwind and asked her to install a damage meter so she’ll be able to practice 🙂

I’ve been watching a lot of Foster Kitten Cam recently. The Ghostbuster kittens are so cute! It was sad last night though as Peter, one of the kittens, died in Foster Dad John’s hands. It upset me quite a bit even though it’s not uncommon for kittens to not survive. He was so active, constantly trying to escape, and I know he will be missed by a lot of people. His litter mates, Egon and Ray, are also really active and keeping their mamma Janine busy. Earlier today one of them escaped the box and mamma had to carry him back in 😛

I tried to watch some Hearthstone earlier but not quite got the concentration for it. I think I’ll go do some easy levelling or something in World of Warcraft. I’m hoping my body starts behaving better soon but until then I’ll just do what I can to not get worse and distract myself from the worst of the blehness.

Danni

Bedrooms and WoW and Stuff

Computers, Danni, Gaming, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft
A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.
A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.

I’m now nocturnal, thanks to sleeping most of the day on Thursday when I was meant to be going to the hospital. I’m not concerned about this, as otherwise I’m not doing too bad for me (so long as I don’t move, I’m not touched, and I don’t eat) and I figure it’ll sort itself out in its own time.

For Valentine’s Day I kicked Johan out so that Becca and I could sort out his bedroom. He went to see The Lego Movie (he really enjoyed it and said it was very good). Becca brought all the boxes in Johan’s room into mine so I could work out where things go, and after a lot of work (mostly by Becca) we got it sorted. When she’d finished, she made the bed, put Patricia (the penguin) and Charlie (the Jedi monkey) on top and took a photo so I could see.

Johan was very happy with this, and we decided that on Saturday he’d replace the single bed with the double bed I used to use, as there was now room to do that. He also moved the remaining boxes into the cupboard, dismantled the clothes rail, moved in the spare computer desk, and a spare kitchen cupboard we happened to have for his clothes (until we get him a chest of drawers). He’s now wanting to put his posters up (we can’t paint until I’m less sensitive to smells or able to disappear for a few days) so it feels more like his space. Since he’d been sleeping in what was effectively a storage room for two years, I’m hoping he enjoys having a proper room (and having the double bed- he’s yet to tell me which is more comfortable though).

The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.
The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.

This means our flat is getting closer to being sorted. Now the living room is the main room that needs working on, but that shouldn’t be as difficult as Johan’s was. We have a lot of boxes to sort through and I need to get some bookcases for all my books. The plan is to get a daybed frame and use that with the (now spare) single mattress to replace the sofa, so that if we do have someone staying over they’ve got somewhere to sleep, and maybe I’ll be able to lie down in the living room when I’m doing better. This is mostly because we don’t otherwise have room for all three beds (my hospital bed, the double bed in Johan’s room and the single bed) and that mattress is really comfortable so I don’t want to get rid of it 😛 Our sofa is rarely used as such anyway (Johan spends all his time in his computer chair, and I’ll be in my wheelchair if I go through there) so having a daybed is a better idea. We’ll also be able to use bedding and cushions to make it purple 🙂

Becca went home yesterday (Sunday). I think she enjoyed her stay here, even though it included a lot of hard work. It was nice for us as well- having someone else to talk to and just be with for a few days was good, and she has a pretty good understanding of my needs so I didn’t have to worry about offending her or upsetting her if I needed some time alone. We have determined that she doesn’t want to do personal care as a job, but she’s able to provide mine okay so it meant Johan got a bit of a break, even while he was here.

Since I’m not doing too bad, I’ve been playing probably too much World of Warcraft. In the last day I’ve got my Pandaren Monk Dannila to level 90, and my first Battle Pet to level 25. After I wake up I’m going to be doing some recruit a friend levelling with Becca, which will be fun. We’re currently level 56 and I’m hoping we’ll reach level 60 so we can get flying (I’m supplying the gold, as my gold making is ticking over even though I’ve barely worked on it recently). Now I’ve got my first max level battle pet I’m finding it much easier overall, so it shouldn’t be too long before I have several of them. I’ve got a list of goals for World of Warcraft so I have some idea what to work on, especially as different things require different amounts of brain power/concentration (I’m not well enough to raid at the moment but pet battles and levelling are fine).

I still can’t watch My Little Pony, which is frustrating. Not sure why exactly but I just can’t seem to understand what’s going on. This is especially confuzzling as I’m able to play World of Warcraft okay. The same thing applied to trying to watch the Winter Olympics- I had no idea what was happening, though the figure skating I saw was pretty. I’m managing to read okay (even if I can’t remember it afterwards) so I’m going to guess it’s a problem with auditory processing being particularly bad at the moment. That’ll also fit with me struggling to understand Johan when he’s talking to me. I need to get the subtitles on for Ponies but that requires brain power and mine is limited 😛

I’m happy. Johan has been cheerful recently as well. I’ve done some productive things (cancelled Netflix and Unblock US as we’re not using them right now- we’ll resubscribe when we want them) and I’ve got a plan for other things that need doing so I can sort them when I’m next able to. Even though I might need to wait until June to see my consultant (that’s when my next appointment is- I’m hoping for a cancellation) I feel like I can get things sorted and moving forward now. I still have some problems (my body does not like me eating- doing so causes bloating, nausea and pain no matter what I’m having) and I can’t get out of bed yet, but they will get better.

Danni

No Go

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

So, I didn’t get to go to my hospital appointment today. At about 7am we got a phonecall from the ambulance service saying that one of the ambulance people who was meant to be taking me to hospital was ill, and asked if I could travel by wheelchair instead. After Johan explained that wouldn’t be possible, they said they’d try and find someone else. My appointment time (8.30am) came and went, and about 9ish we got a phone call saying that they’d tried to get someone, but they wouldn’t have been able to get me there until at least 10am and having spoken to the clinic that would have been too late for them. So the appointment was cancelled and I went back to sleep.

They have said that I’ve been put on the cancellations list (next cancelled appointment I get) and they’re going to get me an afternoon appointment next time, so there’s more of a chance I’ll actually get there. So far since last year I’ve had 5 appointments at hospital, and only made it to one of them, which was last February (so over a year ago now). One of them we rearranged as they made it too early in the morning (until recently the ambulance service didn’t start until 9am, but that’s changed now), but the other three I’ve not been able to get to because of problems with the ambulance transport. The reason I was able to get to the appointment last February was because I was doing better than I am now so didn’t need a stretcher, and it was at the local hospital where Johan taking me up on the bus is less stressful than travelling in the ambulance (hospital is 5 minutes up the road).

It is frustrating. The preparation yesterday took hours, and I didn’t get enough sleep last night because of the appointment, and then it didn’t happen again. We’re lucky that Becca was able to help, as otherwise it would have taken even longer. If I were less ill I’d be able to travel by wheelchair, though there’s no guarantee the ambulance would be able to transport me in it (two of the cancellations were because they couldn’t transport me in my wheelchair, before the last relapse made me worse). If I was well enough to go without a wheelchair I wouldn’t have needed the appointment. Being ill is complicated.

Becca is staying for a couple more days I think (we’ve not but a time on it yet). Tomorrow we’re kicking Johan out so we can work on sorting his bedroom out (he gets panicky if he’s here when we’re doing it, and panicky if he tries to do it). It’s mostly done by Becca bringing the boxes into my room, I work out where the contents go, and Becca puts them where they belong. We did a bit today and there’s now a bit more room in there, and tomorrow we hope to get a decent amount done. Having her here is good 🙂 We’re trying to teach her about Nerdfighteria. She’s also playing a lot of World of Warcraft (I’ve been playing some today- my Monk is now level 88 :D).

I’m hoping it won’t be too long until my next appointment to see my consultant. I really need to see him so the case conference can happen and I can get a hoist and shower chair. Until then I guess I’ll lie here and keep going on 🙂

Danni

Preparing For An Outing

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

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy 🙂

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting 🙂 For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird 😛 I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can 😀