Nov 202014
 

Yesterday I wrote a blog post, but forgot to publish it before sleeping. Fixed now, but I was a silly sausage.

I’m normally a very happy Danni. Penguins, friends, family, technology, purple, all awesome things that make me happy. There are some things that I don’t like about being me, some coming from being ill, others from being Autistic and Dyspraxic, and some combined to make smaller issues bigger.

One of the main ones is struggling to communicate with friends and family. There are several things that cause this to be an issue. The first is unless prompted, I forget people (and things) exist. Luckily these days there’s friend lists on Facebook and similar, but I’m unable to name all my friends and family without some form of prompt. I love them all dearly, it’s a quirk of my memory that’s been made much worse by being ill. I have to keep reminders around so I never forget who Sammie (my daughter) is. I imagine most people don’t forget their own immediate family, but I do. I find frequent Facebook statuses, tweets and stuff really helpful to remember who people are :-)

I’m also pretty face blind. I don’t recognise myself in the mirror, and remember other people by hair, clothing style, voice and movement. I do better with photographs, but have thought pictures of my sister were me before. If someone drastically changes their hair style, especially without warning, it can take me a while to get used to their new one. This is less of a problem now I rarely see people face to face but it’s still frustrating.

I struggle to initiate conversation, even with people I really like and know well. Not because I don’t care about them, but because I don’t know what to say. I was getting better at this but then I got ill and it’s bad again. I really appreciate when others start a conversation with me because replying is much easier. Unfortunately since I became really ill I’m not always up to long conversations, but I’m hoping that will improve soon.

I’ve got a type of hearing problem where I can’t hear speech properly when there’s background noise. My actual hearing is better than average (I can hear things most other people can’t) but I can’t filter what I hear so have everything coming through, which is exhausting. I lip read to some extent which helps a bit but in a noisy room I simply can’t hear someone speaking. This is also a major part of why I can’t use the phone – I have no visual clues to help me and the line or background noise makes it nearly impossible to understand what’s being said. When I try it takes so much energy I’m completely exhausted afterwards and have relapsed because of it.

I’m tired now so I’ll leave it there, but understanding these are difficulties I have due to disability rather than being lazy or weak makes it much easier to deal with and means I can concentrate on workarounds to these issues. I’m still awesome, despite my problems :-)

 Posted by at 11:51 pm
Nov 192014
 

I’m really happy as I got my Night Elf Priestess Danni to level 100 this morning. I’m kinda overwhelmed with all the stuff there is to do. So far I know I want to finish all the zone quests, search for all the hidden treasures, kill all the rare mobs,  level all my professions to 700, do the pet battles in my garrison, level my garrison buildings and heal all the dungeons in a guild group, preferably on heroic. That should keep me busy for a bit :-P

I’ve also managed to fix my problems with Minecraft. Turns out there’s a problem with the latest Java and going back to an older version fixed the crashes I was having. Yay! Sammie and her friend want me to play on the Minecraft server on Friday so I have that to look forward to.

My health seems to be improving a bit. Not only can I spend a lot of time on my computer, but I’m also able to be propped up more in bed. If I’m still doing well tomorrow I’ll be trying to sit on the edge of the bed (with Johan helping) to try and build up my tolerance again. I’m also finding reading a bit easier now. I still have the cold of doom but it does seem to be slowly easing up.

I got my blood results back from the hospital and it turns out I’m malnourished. Various deficiencies which I’m pretty sure are caused by not being able to eat properly for far too long. The doctor has recommended supplements and help from the dietician. I’m wondering though if it’s being worsened by my digestive system forgetting how to do its job a lot of the time. If I get that sorted though I’m hoping it’ll mean I feel a bit better, even though I know it won’t fix everything. The penguins are telling me I need more fish. I agree with them.

Sleeping pattern is still back to front. Not too worried about it but I’m trying to push it back as that works better for me than trying to bring it forward. If I can get it closer to normal I don’t know how long it’ll last but it’ll make playing with Sammie much easier so it’s worth it.

Penguins still exist. I have good friends. There are amazing people who I love and who love me. I’ve been able to do loads for me. Today is a good day :-)

 Posted by at 3:20 pm
Nov 182014
 

One of the awesome people I’ve met since I’ve been ill is the amazing Jessica LE Taylor. I first spoke to her on Twitter, after coming across her video The World of One Room  and discovering that not only did we both have severe ME, she also had some of the same symptoms I did, making me feel much less alone. I’ve since been following her progress, which includes sitting, standing and even taking her first steps thanks to intensive therapy in a private hospital.

Jessica has had severe ME for years, spending much of that time in hospital paralysed. While there, she wrote a song. Spread the Hope has now been released as a Christmas single, with the proceeds benefiting four charities: Share A Star (started by Jessica, sends special holding stars to seriously ill children), Post Pals (sends letters and gifts to ill or disabled children), Help Harry Help Others (cancer charity giving hope) and The Katy Holmes Trust (cancer charity hoping to find a cure for paediatric brain tumours).

You can watch the single on YouTube below and buy it from http://spreadthehope.christmas/

 Posted by at 11:21 pm
Nov 172014
 

Some days are good.

Some days are bad.

Some days I really look forward to.

Some days I don’t.

Today is a good day. I am on my computer distracting myself from the pain and blehness by being a Night Elf Priest, helping people and smiting demons. I ate a meal and it’s only being annoyingly painful, not exceedingly so.

I’m looking forward to days in the near future, where I’ll play games with Sammie or watch a film. Where I’ll plan presents for her and my friends. Days where the pain stays at a level I can cope with with just my normal painkillers and stuff.

I’m hoping this December will be different from the last few, where I’ve got really ill and been paralysed. They were no fun. But I was still able to be happy because I know I have friends and family who love me, and penguins exist.

Penguins always make me happy. Even when I forget who I am because of illness.

A lot of the things people think are important aren’t. A person’s worth is not based on what job they do, what exams they pass. It’s based on how much they love. And every human is capable of love. It can be very hard sometimes, but I’ve never met anyone who couldn’t love. It might not be expressed how people expect, but even if they only love themselves, that counts. Every human has worth.

I hope that I’ll be out of bed soon, able to go into my wheelchair and out of this flat. But even if that doesn’t happen, I know that my life is worth living. Even when the pain is more than I can bear. Even when I don’t know who I am. My life is worth living. I don’t like it when people suffer, but we should try to reduce the suffering, not make them feel they’re not worth life, at least until it’s time for them to go.

I’m not scared to die. I don’t want it to happen for a very long time, but some things are out of my hands, and when I die is one of them. As it should be. I know that although there’s many things I want to do, I’ve done the most important, which is love and be loved. I hope I have much more time to do so, especially as I want to see Sammie continue to grow into her own, amazing person. But if I were to die soon, I know that things will be okay because of love.

 Posted by at 11:25 pm
Nov 162014
 

Maybe good? My sleep is opposite right now. Sleep during day, awake during the night. Sleep means nightmares and pain, which I not like. Broken sleep makes Danni grumpypants.

Before I went to sleep this morning I read a book, called Wakefield. I enjoyed it, even though some of the language was problematic. I’ll have to get the next book in the series at some point.

No WoW tonight. Too tired. Rest is good.

I think best just before I go to sleep. I’m usually too tired to write down what I’m thinking about, then I’ve forgotten it when I wake up again (only remembering I wanted to remember something). Is annoying.

Maybe I sleep again soon and wake up during day. That sounds like plan. My plans rarely work how I want them to, but I’ll keep trying. I’m Alliance, after all :-)

 Posted by at 11:42 pm
Nov 152014
 

For some reason Java keeps crashing on my computer when I’m running Minecraft. Very annoying but I’m not with it enough to fix it today. Maybe tomorrow.

I’ve played Minecraft with Sammie today (when I could stay in) and then went into World of Warcraft for more levelling. The queues were much shorter today (about 20 minutes) and there was a lot less lag. Yay! I’ve managed to get to level 96 which isn’t bad going for me :) Much of the guild are close to or level 100 now, which is awesome. Johan is the best geared in the guild, which is cool (though it’s only heroic level stuff so it’ll probably change when raiding starts).

I’m well enough for my computer (obviously) which I’m super happy about but touch and stuff is being really problematic. I want computer a bit more right now but if it continues for more than a few more days I’ll have to sort something out.

Got a letter from my consultant today. Mentioned I’d a previous positive ANA test (news to me) and now have probable POTS (not surprised). Also says fatigue of unknown origin, which is fair enough. I’ve been referred to Professor Julia Newton so hopefully she’ll be able to help (I know a lot of people who have asked to be referred to her so I’m feeling very lucky it has happened for me without having to ask, and that she’s not far away).

I’ve got a couple of blog drafts I want to finish, but all brain power currently going into computer gaming related stuff (or talking to very important people). I’m sure I’ll manage it at some point :)

 Posted by at 11:47 pm
Nov 142014
 

I’m used to waiting for things. Waiting for appointments, waiting for a hoist, waiting for drinks, waiting for painkillers, being ill involves a lot of waiting. Today my long wait has been to get into World of Warcraft.

It’s been 2 hours so far since I joined the queue, and I’m still not in (though it’s saying I’m 54th and there should only be a 2 minute wait… hopefully). I’m getting rather impatient :)

Other than trying to get into WoW, today I’ve eaten salad and fruit (probably not the best since I’m losing weight, but I wanted it), and played Minecraft with Sammie and her friend. I built a maze :)

Tomorrow I hope to play again with her, but we’ll see how I am. I’ve been lucky to manage the computer so much with this cold the last few days :)

 Posted by at 11:18 pm
Nov 132014
 
Warlords of Draenor Collector's Edition box

Warlords of Draenor Collector’s Edition box

So last night I did eventually get onto World of Warcraft and start the quests for the new expansion. I’m really enjoying it. I probably stayed up far too late doing so and got to sleep again about 11am, after my Collector’s Edition arrived. The art book is very heavy so I’ll need help to look at it, but I’m really looking forward to it. I’m using my new Blackhoof mouse mat with my computer and Johan is going to rip the soundtrack for me :)

When I came off the computer this morning, I was level 92. I’m still in Shadowmoon Valley, and keep being distracted by Garrison quests and Archaeology (which I’ve already got to 700). I’ve still not got any gear upgrades but that’s okay as I did have (old) flex raiding stuff from Mists of Pandaria.

This evening I woke up about 7pm feeling pretty good for me. I had a few problems getting in at first, so I played a game of Hearthstone while I was waiting for it to calm down. It seems the lag is getting better now. I’m really happy I’ve been able to go on the computer and play two days in a row. I’m hoping this will continue, though I won’t be upset if it doesn’t. These have been really good days and I want them to continue :D

Johan only slept about 3 hours this morning. He fell asleep about 7am and woke up for the postman just after 10am :P He seems happy though.

When I eventually crash or reach level 100 I might blog about something else, but until then I’ve got more levelling to do :)

 Posted by at 11:54 pm
Nov 122014
 

Today was much better than yesterday. Woke up about 4.30am needing painkillers again, so Johan gave me them then we spent an hour or so talking about random stuff. I went back to sleep about 7.30am and woke up around 2.30pm feeling much better than I had.

I went on my computer about 5pm and spoke to Sammie for a bit, then suddenly felt really ill and needed an anti-emetic or I was going to throw up :( I think there was too many noises for my head to process, so I’ll find a way to talk to her without that next time. After that kicked in the carer was due so played Cards against Humanity with Esther and Johan on the telly, then the carer came and I changed into a clean nightie.

I went back on my computer again and started downloading the lollipop image for my Nexus 10. It’s so pretty! I’m hoping to get root on it later with a modded kernel, so I can put all my backups on.

World of Warcraft Warlords of Draenor was released at 11pm, but this is all I get:

You have been disconnected from the server.

You have been disconnected from the server.

So I’m not happy. I’m hoping I’ll be able to get on before I need to come off. Luckily with waking up so late I should be okay for a couple of hours. At least I’ve got setting my tablet to keep me occupied while I wait…

Edit 11.47pm: I’m on Draenor! Yay!

 Posted by at 11:41 pm
Nov 112014
 

The district nurse was out today, for my regular checkup (I’m assessed as high risk for pressure sores, which is why they keep coming). She was awesome. We spent as much time talking about penguins as about my health stuff. She told me that because I’ve lost weight (lying on my hips is getting painful quicker due to less padding, and a couple of carers have noticed) and I’ve got a reduced appetite I’m now at a higher risk of malnutrition, so she’s going to contact the dietician for a review.

I didn’t sleep well at all last night. I kept waking up because my nose was blocked, and I had to wake Johan up at 4.30am for painkillers, which is unusual (I can normally get back to sleep without them, or wait until later if not). I’ve been more drowsy than normal all day, probably because of lack of decent sleep and being bleh. I can’t wait for this cold to disappear.

I think I’ll be sleeping early tonight. Hopefully it’ll go better than last night. Right now I am listening to the music my brain is making up (I’ve got ear plugs in) and since it’s nice music I’m just going to enjoy it. Warlords of Draenor is out 11pm tomorrow, but if I’m still like this I won’t be playing at launch. I’m hoping Johan gets to though :-)

 Posted by at 5:11 pm