Exploring the Darkmoon Faire

Danni in Transmogrified gear.

Danni in Transmogrified gear.

I’m still improving physically. Sitting in my computer chair is no longer a problem, and I can manage it for several hours without getting any worse. The only problem is movement makes me very ill, so if I try and go in my wheelchair to the bathroom I start feeling really dizzy and sick. As the bathroom is quite a distance away by wheelchair thanks to how big our rooms are, I’m using the commode for now. This also has the advantage of me being able to use it when I want without asking, as I can transfer by myself again :D (Johan says emptying it isn’t any more difficult than pushing me into the bathroom, so he doesn’t mind).

Cognitively I’m not doing too brilliant. There’s been a slight improvement, but writing emails is beyond me, as is understanding Facebook. I am however managing to play quite a bit of World of Warcraft, and since I’ve not been on for ages I have lots to catch up with. This week the Darkmoon Faire is on, and they’ve changed it since the last time I was there (the changes were in place last month, but I was too ill to see it then). It now has its own island, lots of games and quests, and I’ve been having a lot of fun with it :) My favourite game is the ring toss, as I never need more than one token for that :P Also available there are replicas of some of the sets no longer available, including the Devout set I want for Danni, my priest. I’ve managed to get enough prize tickets for the robe, and have done some transmogrification of other items to match it while waiting to get the other items in the set. I may keep the witch’s hat though, as I like that :P

I’ve also been doing quite a lot of heroic dungeons on Danni, as the new ones are very short and easy, and (as I said to one of my groups) it doesn’t matter that I’m now rubbish at healing because no-one dies anyway :P I’ve also ran a bit of Raid Finder, which is interesting but requires more concentration. I am definitely a lot worse at healing than I used to be, and was normally one of the bottom healers, but it was fun and no-one yelled at me, which was good.

Since I’m now able to sit up and do more, I’m going to start making lists of things I want to do. I have television programmes I want to catch up on, lots of things in World of Warcraft I want to do, and films I want to watch. I also have blog posts I want to write, but my concentration isn’t there for them. I’ve got a couple of them in draft form that I’ve started, so I may have a look after this to see if I can finish one of them. I’ve also still got two emails to write, so maybe they should come first. I phoned Sammie on Monday and that went well, so I’m hoping to phone her every weekend to see how she is and things. I’m going to buy a stereo Bluetooth headset for this as I’m finding it hard to hear her a lot of the time and being able to hear with both ears may make it easier.

I’m not sure how I’d describe my M.E. right now. It’s nowhere near as severe as it was, but I’m still housebound and mostly stuck in one room, especially since moving makes me feel so ill. I only manage to get on my computer as it’s very close to the bottom of my bed, and I can go straight from the bed onto my computer chair. Once I’m in my computer chair I’m reluctant to get out of it again as the moving between chair and bed also makes me very dizzy and nauseous, though it eases off quickly once I’ve stopped moving. I’m able to eat okay, and even manage a spoon sometimes :D Being able to sit up though (even in my reclining computer chair) is brilliant, and playing games online (both World of Warcraft and The Sims Social) is a brilliant distraction from the pain and how ill I feel.

I’m also very happy at the moment. Some of this is being really grateful for what I’m able to do now, and for any improvement. Me being happy is also helping Johan’s mood, which is great. I still have the occasional meltdown, but that’s mostly due to sensory overload and is over quickly. Most of my penguins are now sitting on the sofa, as my single bed isn’t big enough for them all and I can see them from my bed there. Tomorrow bidding opens again for more council houses, and we should get somewhere soon. Our urgent priority is for two bedroom bungalows or ground floor flats, with step-free access and a level access shower. We’re not too fussy on where we move to so long as there are decent bus links, but ideally I want to be along Durham Road or close to there because it’ll be so easy to get to Gateshead and there are normally a lot of shops and facilities. The two bungalows I bidded on over Christmas were both in Birtley, which would be awesome (I also bidded on a three bedroom house in Blaydon, but we won’t get that even though it’s adapted- it was the most suitable of the other choices though).

Somehow this outpouring of thoughts has gotten very long. How come I can type really long blog posts in not very long (about 15 minutes on this one) but not short emails or blog posts on important subjects? I don’t know :P

Brain Fail

I want to blog. I have lots of subjects I want to blog about, and even a couple of drafts. My brain its not cooperating with me though so it’s hard for me to write.

I enjoyed Christmas. I’m mostly over the relapse that made me very ill, and back to my “normal” level of functioning. I’m completely nocturnal at the moment, but that’s okay as I have no real need to be awake during the day. I’m sleeping when I’m sleepy, eating when I’m hungry (including lots of chocolate, but it is Christmas), sitting at my computer when I feel up to it and generally listening to my body. I’m also happy.

Facebook is feeling too much for me at the moment. I’m playing a bit of The Sims Social, but trying to keep up with my friend’s statuses is just confusing me. I’m managing Twitter better though, so if you like you can follow me on there @Dannilion.

I know I’ve said this lots recently, but thank you to my friends for being there for me. I really do appreciate it. Thank you also to Johan, who has been doing a remarkable job of looking after me, both during and after this relapse.

Posted in Computers, Danni, Gaming, M.E., Physical Disability, Real Life. Comments Off »

Relapse

I’m currently experiencing a bit of a relapse, though I am doing a bit better than I was. Last week my sister came around to help out and tidy up a bit, and we had a bit of a chat, which meant I overdid it a bit. I also caught a cold, and my body didn’t react too well. I was completely intolerant to any light or noise, any touch was completely unbearable (it felt like my duvet and pyjamas were trying to murder me), I was in massive amounts of pain that my painkillers were not touching (normally tramadol takes the edge off it) and I didn’t have the energy to move, so I was relying on Johan to roll me over, which also caused more pain. I also had to use a bed pan as I was too ill to manage even the commode- even being propped up in bed made me feel more dizzy, sick and ill.

I am doing a bit better now. I can manage low levels of light while wearing my sunglasses (I tried having the main light on but it was too much). I can roll over in bed by myself, and use the touchscreen on my tablet which is how I’m writing this. I can tolerate some noise. I still can’t cope with being propped up for more than a few seconds so am still using the bed pan. I can’t sleep properly because I keep waking up in massive amounts of pain. I can’t chew so Johan is feeding me soft foods like jelly and yoghurt. I can talk now, though only can whisper. I spend most if my time resting as everything, even tiny things, leaves me completely exhausted.

I am grateful though. I’m grateful that I’ve improved enough to roll over by myself, even if it is painful and exhausting. I’m grateful that I have Johan to look after me. I’m grateful that I have my tablet computer, so I can communicate with the outside world through twitter. I’m grateful to my GP, who asks how I’m doing during Johan’s appointment and is going to phone him tomorrow to talk about me. He also prescribed me calcichew, which I can suck and taste like sweets.

I hope this is just a short relapse. I hope that by Christmas I will be able to sit up in bed, can feed myself solid foods and no longer have to use the horrible bed pan. If I can’t, I’ll ask Johan if I can postpone Christmas dinner until I can eat it.

This is the worst I’ve ever been. It’s scared both me and Johan. I am hopeful though. In good news I’ve been put on urgent priority for an adapted property. The direct payments are being sorted out and Johan is going to get help to manage them. Gateshead Carers Association have been amazing- helping Johan with contacting everyone and being there for him (and me). Things are being sorted. Now I just need my health to improve.

It’s taken me a few days to write this- started it on Monday and it’s now Thursday. Johan is happily playing World of Warcraft and I’m going to get some rest then go on Twitter.

Patch 4.3

Today has been a World of Warcraft day. I have spent far too much time sitting at my computer playing that game. The reason for this is today patch 4.3 – Hour of Twilight was released. To people who now have no clue what I’m talking about, this means there’s lots of new stuff to do in the game that there wasn’t yesterday.

The first thing I did was get Danni sorted with some nice gear. I decided that until I get around to farming a proper pretty set of armour, I was going to wear Black Mageweave (I am a tailor so made it myself), which is less pretty and more sexy. Up to now I’ve not seen anyone else wearing it, so that is good.

I then started dumping most of my old gear from my bank into void storage. And got angry because some of the items weren’t allowed in, for vague reasons. Like my Ashen Verdict ring that I kept from Ice Crown Citadel. I managed to dump quite a bit in there though, and that meant I could dump stuff from my bags into my bank, so now I can actually use my bags again. This is good.

After a long rest, I went back on to do the new 5 man dungeons. We got a mostly guild group together, and had a pug mage from a different realm who was awesome and gave me cookies. The new dungeons were a bit challenging but not too hard, and were tons of fun. I did sit up for too long so I could complete them all (we had a few wipes while learning what to do and with me occasionally failing) but it was worth it. The individual dungeons are short enough that if I’m having a good day I should be able to run them, so that’s awesome.

There’s also a new raid, but I’m not geared enough or well enough to try that yet. Maybe when I improve a bit.

Johan went out today to the MetroCentre. Apparently it was packed. This may have had something to do with a strike that was going on, that meant most of the schools were closed, among other places. He didn’t really buy anything that I saw, but did use his mobile phone to buy a McDonalds on the way home, paid for by Google. That was cool, though I want a McDonalds and can’t have one because the bus drivers won’t let Johan carry one on for me :(

I am now hungry. I have to wait for Johan to complete a dungeon before he can even start cooking. This means I’ll have to stay up late. I’m not particularly happy about this. At least I can watch Penguins in the meantime.

Christmas Shopping

This will be a short post as I am super tired and about to sleep.

Today I started my Christmas shopping. I got Sammie a Nintendo 3DS in pink as that’s what she wants. I hope she likes it :) I’ve also started looking at what other presents she wants for both Christmas and her birthday (on Boxing Day). I also was told some of the sweet things she has been saying- one of them made me cry.

I also sent an email to an Amazon seller who wanted more information about an order I’d placed, received my new laptop battery which hopefully will make it run a bit better, and wrote a list of things for the hospital on Friday. I was hoping to get a wash and some clean pyjamas, but that didn’t happen. Maybe tomorrow. I also had lots of cuddles, then discovered that cuddles are exhausting and make me feel ill :(

Tomorrow Johan is at the doctors in the morning and the carer’s association people are coming in the afternoon. Hopefully it will be okay.

Posted in Computers, Danni, M.E., NaBloPoMo, Physical Disability, Real Life. Comments Off »

Yesterday

Since I can’t be bothered to type it again, here’s what I posted on a forum about yesterday:

Made it to the hospital yesterday in a taxi, but got really ill during the appointment from sitting up and they sent me to A+E. Limbs jerking themselves around, and ended up halfway down my wheelchair held in by the seatbelt around my chest. Not comfy.

Things calmed down once they let me lie down and rest for a bit, then they sent me home sitting up in an ambulance, which was pure torture. Managed it (only scaring the ambulance man a little bit), and the ambulance men carried me upstairs and to my bed, and I slept a few hours afterwards.

Johan and I have agreed I’m not leaving the flat again until I’m back to the functioning level I was at the beginning of September, where I could sit up for a few hours without getting worse, as that’s what is needed if I want to go anywhere. If I lived in a ground floor flat I’d just get a reclining wheelchair and be done with it, but we don’t and we’ve not heard from the housing for a while.

The dentist doctor (I’m sure she has a proper name) came to see me in A+E and said that as I’m too ill for even the assessment the anaesthetist won’t give me a general anaesthetic, so I won’t be able to have my tooth removed (sedation and local anaesthetics don’t work for me). I’ve been trying to put up with it for a year now, so I guess I’ll just be going on lots of antibiotics and begging my doctor for painkillers that work on toothache, since tramadol doesn’t work.

I’m a little upset because I know that if I’d been allowed to be transported lying down, none of this would have happened. It’s just sitting up my body dislikes, and it has its ways of showing this. Hopefully staying at home and resting for the next few weeks/months will help.

That’s mostly it. Today I’ve watched Catreina play Skyrim,  bought Oblivion on Steam, failed to get it working on my laptop, and slept a lot while Johan went to the MetroCentre (he prefers going out when I’m asleep, so if there’s a fire I’ll burn to death :p). On Saturday it is our friend Colin’s wedding, and I’m not well enough to go :’( I’m sending Johan though, and getting him to take lots of photos so I can see what he’s wearing (and also see his family :p). I never thought Colin would be the type to get married (and to have kids, since his fiancée has some) but he has matured a lot since he was throwing mouse mats at lecturers in college a few years ago. His fiancée is lovely though, so I’m hoping they’re very happy together :)

Edit: It really helps to press publish, silly Danni.

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 :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 :)

Level 25

Saturday was my 25th birthday. It went well.

In January I reported my change in circumstances to the DLA people, as by that point I was unable to walk outside at all. They decided to ignore everything I said in the letter, and kept my original award of higher care, lower mobility. While I was waiting to hear from them, I went from being able to take a few steps to not being able to walk at all, so I felt that I should be entitled to higher mobility (for those who are unable, or virtually unable, to walk). I put in an appeal, and they contacted my GP, consultant, then sent out an evil ATOS doctor last week to do a medical. It must have convinced them, as on Friday I received a letter saying my appeal has been stopped as they’d changed their decision and awarded me higher care, higher mobility :D My reasons for having higher care have also been changed from mental health (which is much improved, if not completely fixed) to physical care needs, which is more accurate now.

The back payment came in on Saturday, so I sent Johan out to buy my new television. It does iPlayer and YouTube and stuff, as well as being a million times better than my old one, which is nearly dead. It was less than £300, which for a 32″ LCD with internet is extremely good :) It’s also nice being able to operate it from bed :)

What else has happened? I’ve still been really ill. I now spend most of the day in bed (about 20+ hours, sometimes nearly 24) at least four days a week. My sleep is a bit all over the place- little things stop me getting to sleep for hours after my meds would normally knock me out, then I struggle to wake up in the mornings (though to be fair, that’s not unusual).

I had my Computing exam. It went better than expected, so I’m hoping for at least a B, despite not being able to remember anything I’d been taught since Easter. I did the exam in the first aid room, but the bed was too high for me to use it. I took some beanbags but ended up not using them either, as by the time I needed to lie down I only had 3 short questions left, so I answered them, checked my answers, printed it off and went and lay on the recliner in Interface for an hour, napping for quite a bit of it. We stayed in a hotel near the college the night before so I didn’t have to worry about the journey in (we got a taxi from the hotel) and it was nice, though I couldn’t get my wheelchair into the bathroom, despite it supposedly being a disabled room. I crawled instead, and let them know when we were checking out.

Apart from that, I’ve not been in college as much as I wanted to. It’s the last week next week, and there’s the leavers ceremony, prom and things. I want to go but will have to see how my health is.

I did manage to make it to Flamingo Land with the college on Friday though :) First of all everything that could go wrong, did. I struggled to get up after not being able to sleep until 1am because there were people talking very loudly outside. We were slightly late leaving because we forgot something, so we missed the first bus by about 30 seconds. The second bus wasn’t accessible, and we got on the third but I reacted badly to a woman’s perfume so had to get off at Blaydon. We got on the forth bus, but were running really late by then. We missed the metro by less than a minute, so ended up emailing the college to let them know we would be late. One of the support staff picked us up from the metro station, which was good :) Then the lift on the coach wasn’t working properly because the road and path are uneven there. It took 25 minutes until I was lifted onto the lift so I could actually get on the coach :P

After that though everything went well. I got a disabled band and Johan got a carer band, so we didn’t have to queue for the rides. I went on the first roller coaster to see how I’d manage with it, and it turned out that because they had good back support and I don’t get scared I could manage them fine, so I went on a few :) I also got to see the penguins, which was awesome. I’ve been tired since, but overall I’ve not been much worse than I was anyway, so it was more the long day that did it than being at the theme park itself. Luckily it was pretty quiet there.

I went to little Martin’s birthday party on Monday. He’s getting so big :)

I am having problems communicating beyond just Twitter and Facebook at the moment. Instant messenger is exceptionally difficult, even with friends, and emails and letters are pretty much impossible to write. I keep losing speech, which makes communicating with the carers difficult when it happens. I am currently creating an Android app that should help with that at least.

I’ve also started project 365. I’ve posted the first two days to Facebook, and I’ll copy them over here in a minute. I’m hoping that taking a photo everyday, no matter how crappy, will give me something to do :)

Posted in College, Computers, Computing, Danni, Interface, Real Life. Comments Off »

Crawling Penguins

I’ve had an interesting time. I saw my GP. He persuaded me to try codeine again, at a higher dose. It worked… for the first 90 minutes. Then I had the most horrendous stomach cramps- worse than the pain I was already in. So I stopped taking it. A week later, I ended up in A+E because the pain was unbearable. The morphine I was given also gave me stomach cramps. Because the doctor was able to ask what they were like while I was there, I was able to describe that they were like spasms (I have very poor body awareness and also a bad short/medium term memory, so after they’ve finished I can’t remember what they’re like). She had a think, gave me buscopan and it worked! No more stomach cramps. She also gave me tramadol to last a week (well, until the next morning with a prescription for the week) to last until I saw my GP.

My GP took me off the tramadol and put me back on the codeine, with the buscopan. It works, but it turns out not all the tummy troubles were spasms- I still get a really sore, uncomfortable abdomen with the codeine, but without the spasms I’m not rolling around in agony. I’m taking it because my experiment of not taking it failed, but I’m not happy as tramadol didn’t cause the same problems, and worked better. I am aware that the tramadol shouldn’t really be taken with the other medication I’m on though as it can cause fits, so I’m being a good girl (mostly).

Seeing the doctor also made me a lot more ill. He had me trying to stand up and trying to walk, which exhausted me so much, I’ve been bedbound pretty much all the time since then. Yeah, thanks. I’m currently refusing to go back there, as it’s not worth making myself more ill over it. I need more codeine though, as I only had 2 weeks worth from the first time, so I need to figure out a way of getting a prescription without getting out of bed or using the phone. I suspect I may be writing a letter, then asking Johan to take it down there.

I did manage to get out of bed long enough to go to college last Monday, but I couldn’t concentrate and I really wasn’t well enough to be there, as now I can’t even sit up unsupported for a few minutes. I’ve fallen really behind on Computing, especially since my brain is really foggy. It is half term next week though, so I’m hoping to be able to catch up a bit. I also need to do a bit of catching up with Interface work, but that’s not quite as difficult so shouldn’t take too long, though if it’s worksheets I’ll need a scribe as I can’t hold a pen for much longer than to sign my signature.

Some good news though- my laptop has been repaired, and now works mostly okay. It needs a new battery (not covered by insurance) but it lasts long enough, and since I don’t move around much I can keep it plugged in. It also means that when my concentration comes back I can do some Computing work in bed, as the laptop has Windows on it and runs well enough for VB.Net. I can also play World of Warcraft on it. It’s not good enough for instances or raids, but it’s okay for chatting and dailies. It’s also lighter and cooler than Johan’s laptop, so better for me in bed. I’m really happy to have it back.

In World of Warcraft, I’ve completed my first level 85 normal dungeon! Possibly not the biggest achievement, but it felt good and went well. I could tell how healing has changed, and how I need to adapt for when I get to heroics and raids. I also went to ICC and did a ton of hardmodes, and achievements. It was a lot of fun, as with being all level 85 it didn’t require much concentration, and I already knew most of the fights. I’m hoping to be able to do the rest of it with the same group.

My mood has been a bit up and down, mostly because of pain and being fed up of being stuck in bed. Overall it’s good, I just get a bit sad or upset when I can’t do something, like sit up. Johan’s been pretty ill though- he had a breakdown, and his anxiety and depression got really bad, and he couldn’t speak. He’s back on medication to help with anxiety, and has been referred to the CMHT to get help overall. We know the main cause is being under so much stress from looking after me, but he needs a bit of help to get through this patch.

We finally got our Social Services assessments. The conclusion is I should be entitled to quite a bit of help with personal care, and hopefully Johan can get some respite. Eventually, I’ll probably get a personal assistant, who may be able to help me with getting to and from college. That would be awesome. We also have forms to fill in to move house, on medical needs. I need a property which has level or ramped access, an adapted bathroom, and that is generally wheelchair accessible, since it doesn’t look like I’ll be walking any time soon. When we have moved, I’ll be getting an electric wheelchair if my appeal for higher rate mobility is successful, which would be awesome, as it would give me so much independence.

I’m trying to think of things that I can do in bed, that won’t make me any more ill. I really need to spend less time on my laptop, and I can’t concentrate well enough to read, so I’m thinking of maybe getting some crafty stuff like beads to work with for when I’m not napping. I’m hoping that I’ll be able to get up and maybe go out soon. I’m on day four of not biting my nails, so I’m hoping to get some nail varnish and things to make them pretty :)

I’ll try not to take so long over my next blog post :P

Tomorrow Never Comes

Yesterday I promised words. Problem is I didn’t know then that I’d be feeling like a skyscraper had fallen on top of me. Yay colds! So instead of going to college (things to work on- feeling guilty when I don’t go in) I stayed at home and rested. In bed now on the laptop so I can type this.

On that note, Annika (my laptop) is very ill. Vista (yes, I know, but she came with it) doesn’t boot at all, and the DVD drive doesn’t work so I can’t repair it. Oh, and there’s a highly reproducible fault where if it’s past the POST check and you press the DVD drive in, it switches off (happens both in Vista and Linux). Also, the charger is now unreliable and has to be in the exact right position or it doesn’t charge. Tomorrow I will be asking Johan to call the repair people to see if they can sort it out. I do pay for it, so I may as well.

I will see how I am tomorrow before deciding on college. If anything like today, it’s not going to happen. Sleep now, though.