Category: Physical Disability

I’ve not been to sleep yet. I woke up about 4.30pm yesterday, and it’s nearly 2pm today. I’m getting tired, and I’m about to sleep, but I was waiting for Johan to wake up to ask him to fill my cup so I could take painkillers. He’s completely zonked though and I think I’m tired enough to sleep without the painkillers now.

During the night I wrote an email to the local carer’s association to ask them to contact Johan about support for him. Hopefully they’ll be able to help. It would be easier if he could initiate contact, but he can’t so we have to work around it. I’m basically trying to care for my carer, and it’s hard. I’ve also noticed I’m still trying to deny how ill I am, though I have accepted that what was a bad day a few months ago is classed as a good day now. A bad day now means no light, touch, sound or anything can be tolerated.

I really need to write that blog post on M.E. Maybe I start it after I’ve got some sleep.

Fireworks are awesome!

This year I had to watch them from my bed, as I was too ill to go out. It was too cloudy to see the ones from the official display (about a mile away) but someone set some off locally so I got to see those ones. They were pretty 🙂

My sleeping pattern is completely messed up. Woke up about 4.30pm today- it was already dark outside. I’m trying not to worry about it, as it’s probably just because I have a cold and things.

I was featured in TWIM this week 🙂 I never thought I would be, as my blog isn’t really about mental health issues (more autism and M.E.), but I’m happy anyway. 

Johan’s killed his graphics card by keeping the side off his computer. I told him to put it on because of the noise, but no- he knows better. It was completely clogged full of dust, and even cleaning it out it seems to be permenently damaged. I spent £159 on a new one for him, which is part of his Christmas and birthday present.

Still not really able to get out of bed, though I did try sitting on my computer for a bit. Feel terrible for doing so- can hardly control my arms and hands right now, which is making typing this difficult. Evenings are always my best time though.

I really need a bath, as I’ve not had one since last Sunday. My hair is probably a complete mess, as that’s not been touched for days, though it is in a French plait which should help a bit. I have a tangle teezer that should make it easier to sort out.

Aim for tomorrow- to be well enough by 6pm to get a bath so I can get clean. I also want to wear my Diablo 3 t-shirt as it’s awesome and I love it.

I am ill. By that I mean that to type this I have the brightness on its lowest and I’m wearing sunglasses to try and tolerate the light. Even when doing nothing I feel horrendous, with massive amounts of pain, and any form or movement or stimulation makes me feel a lot worse. Johan clicking his mouse (with his quiet mouse) sounds like a gunshot to me.

Hopefully I will be doing a bit better soon, so long as I keep taking my meds and get plenty of rest. In the meantine, I want to kill whoever it was that gave me this cold.

Edit: I thought I’d uploaded this post on the 4th, but obviously not. I’ve reset the date to make sure it’s in the right order.

Went to sleep about 1am this morning, and woke up about 1pm. So that’s another 12 hours sleep. My alarms did go off, but I was too tired to wake up beyond just turning them off.

I have a cold. I’m not sure how I got it, as Johan doesn’t have one, but it’s possible one of the carers gave me it. My body is hating me because of it- I tried and failed to go on my computer, nearly fell of the toilet (lovely Icelandic carer told me off for even attempting to go into the bathroom while this ill) and then did fall off the commode as I tried to get on it by myself. My body is very floppy, and my legs just won’t hold me up. I’m also very dizzy, so it feels like I’m on a boat while lying in bed. Of course I also have the normal cold symptoms of a blocked nose, sneezing, a sore throat, and a high temperature, though ibuprofen is helping with that.

I have a doctors appointment next Thursday, to discuss transport to hospital and something for the muscle problems. I’m hoping I’ll be well enough to get there, as the way I’m feeling now I won’t be able to. I don’t want to have to ask for home visits, as I know much time it takes out of a busy doctor’s day, but at the same time if I get much worse I won’t have any choice 🙁

I’m trying to remain positive, and remind myself that there are those who have M.E. who are doing worse than I am, but it’s hard when I’m in a lot of pain and I can’t even sit up in bed without the world spinning. Last night I got to watch Frozen Planet though, which meant I got to see lots of penguins 😀 That made me happy.