Author: Danni

The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
Danni

A Long Day

Danni, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life

Today has been an interesting day. I woke up about 6.30am, being properly awake by about 7.3oam. This is becoming normal for me, though I do miss being a night owl a bit. Will be good for Friday morning, though. I had to wake Johan up as he’d put his doctors appointment in the calendar for 8.50am and he takes ages to wake up because of his mirtazapine.

Got Johan up (yay cuddles) and he went to the doctors surgery, where he discovered his appointment was for 9.50am, not 8.50am. This caused him to panic, though I helped him calm down with more cuddles. Sent him out again at 9.40am, then got increasingly anxious and panicky while he was gone, worrying about him :p (I’d recently been going to his appointments with him as he found it easier with me there, but I’m too ill to do that now). He was fine, though had a bit of an anxiety attack. We had more cuddles, and things were okay.

The carer’s association people came in the afternoon, and that went okay. Johan got an email from my social worker in the middle of it which made me angry (the agency have been lying to him). Things are hopefully going to improve as the carer’s association people are going to help Johan with stuff and have told him about a digital photography group he can go to, which would be good for him.

This evening we had Chinese, as I was craving won tons (I had won ton soup and crispy won tons :p). I also managed to go into World of Warcraft for the first time in a few days, which was cool. Our friend Bluesapphire  has been made guild master, which is awesome as she was basically running the guild anyway 🙂 Sammie’s Nintendo 3DS also arrived, and I can confirm it is very pink 🙂

Oh, and today I actually managed to get dressed :p In clean pyjamas now. Little things like that make me happy.

 

Danni

Big Business vs Teenage Blogger

Danni

I have been reading the last couple of days about the Burzynski Clinic and how they have been interacting with those who do not agree with them (after doing research and things, as the Burzynski Clinic appear to be quacks). The one that stands out to me most is their communication with Rhys Morgan, a 17 year old Welsh student. It’s disgusting and disgraceful.

As Rhys is much more eloquant than me, I will just link to his blog and ask you to read:

http://rhysmorgan.co/2011/11/threats-from-the-burzynski-clinic/

Danni

Christmas Shopping

Computers, Danni, M.E., NaBloPoMo, Physical Disability, Real Life

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.

Danni

When Being Ill Sucks

Danni, M.E., Physical Disability, Real Life

I am awake and it’s nearly 5am. This is okay, as I had some sleep yesterday evening and I’ll sleep again whenever I get sleepy. I have no commitments or reasons to be awake at a certain time at the moment, so I’ll just do what my body wants it to do.

Sometimes though I wish I wasn’t ill, especially not as ill as this. I’m stuck in bed most to all of the day, and spend all my time in one room, the living room. I only manage to get out of bed occasionally because my computer chair is reachable from my bed, and because Johan helps me with going to the toilet and sometimes with baths. I can mostly cope with this, and my bed is pretty comfy and I have lots of pillows. Boredom isn’t a major issue because I talk to people on Twitter instead. But I am missing out, and that is not so good.

I missed Colin’s wedding. He’s one of my best friends, and I love him for it. I would have loved to have been there to see him get married and meet his step children (I have met his wife before as Colin brought her here to meet me). It was only in Gateshead, so if I’d been able to sit up for a bit I would have been able to go, but I was too ill so couldn’t.

My friends are going to a Christmas party, run by ME North East. There’s also an AYME meetup on the same day. I’m not well enough to go to either, even if it wasn’t the day after going into hospital to have my teeth removed. I need to lie down too much to be able to attempt it.

I’ve been invited to the Interface Christmas dinner. More friends, people I love spending time with. Unless I improve drastically in the next week, I won’t be well enough to go to that, either. I can talk to them on Facebook, but it’s not really the same.

I miss going to Church. I know that God doesn’t mind if I don’t go because of illness, but I miss the communal worship. Although I pray alone, it’s not the same. This is especially important at Christmas, as I love the Christmas carols that are sung and the Christmas story, told over advent.

I do appreciate that I am still a lot better than some people, and that I’m lucky to have my internet access so I can talk to people, especially since a lot of the time I’m too ill for visitors. It can just be hard though knowing I’m too ill to even go places in my wheelchair, and to be completely reliant on someone else to even stay fed.

Danni

Rambling without Walking

Danni, M.E., NaBloPoMo, Physical Disability, Real Life

Today has been a bad day physically. I have been a lot weaker and felt a lot more ill than normal. I am not sure if this is payback from last week or something else. Apart from needing Johan to feed me (too weak/uncoordinated to manage a fork) and to hold me up on the toilet though I have been mostly okay just lying in bed. I also had a long nap.

Twitter has kept me company. I can still type, though it feels harder than normal (the keys keep refusing to go down for me), I can manage my tablet by resting it on stuff, and helping it fall into place to move it. So I have spent most of the day talking to friendly people. I am wanting to get a pet- probably a small caged animal, though I have to research whether it will be suitable and whether I will be able to look after it properly. It wouldn’t be until after Christmas anyhow.

Johan is rambling on about converting and tagging music. I am making noises when it seems appropriate, since my brain is too foggy to understand what he’s going on about. He does have permission to talk at me though 🙂

It has been weird not having to worry about who is going to turn up today, but also kind of freeing. It meant I felt okay about falling asleep an hour before they’d normally turn up, as I used to feel guilty to do that as they wouldn’t be able to do any personal care (and most of them wouldn’t do any housework, so there was no point in them coming).

We have no commitments or anything to worry about until Tuesday, when Johan goes to the doctor and the carer’s association people come here to try and sort things out. This is good. I think I will be resting lots and just doing what I can manage when I can manage it.