Sleepy Danni (Again)

I was hoping to be more with it and awake today than I was yesterday (I’d not got much decent sleep as there was a dog whining for hours). Unfortunately that didn’t happen, and I spent most of the day asleep, missing the time I’d planned to go into Minecraft with Sammie and her friend ๐Ÿ™ I did get on eventually, and we played a bit, but I’m annoyed I was asleep so much ๐Ÿ˜›

It also means I’m nowhere near to fixing my sleeping pattern. Nevermind ๐Ÿ˜› I’m playing World of Warcraft at the moment where there’s loads of stuff for me to do. The problem is choosing what to do first ๐Ÿ˜›

I had an accident that required my bed to be changed, which made Johan very meowy. Luckily he was already awake, as if he’d been asleep he would have been even more grumpy. I’m very grateful I have a spare U-shaped pillow.

This cold is reminding me it’s still here. Feeling all bunged up and headachy today. I think the sitting up on the side of the bed is on hold until I’m a little bit better. I’m glad I’ve not relapsed though.

I’ve got a couple of books I want to read. If I’m able to stay awake after coming off computer tonight then I think I’ll start one of them. I wanted to read 50 books this year and I’ve only managed 32, so I’ve got a lot of catching up to do. I’m so glad I’m able to read now though ๐Ÿ™‚

Downsides to Being Danni

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 ๐Ÿ™‚

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 ๐Ÿ™‚

Level 100!

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,ย  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 ๐Ÿ˜›

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 ๐Ÿ™‚

Spread The Hope

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 Roomย ย 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 Palsย (sends letters and gifts to ill or disabled children), Help Harry Help Othersย (cancer charity giving hope) andย The Katy Holmes Trustย (cancer charity hoping to find a cure for paediatric brain tumours).

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

Some Days

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.