I have spent most of the last month playing computer games, which is good. Mostly World of Warcraft (enjoying Flexi with my guild and Timeless Isle stuff, and levelling a couple of new characters) but I’ve also been playing a bit of Minecraft (Feed the Beast Ultimate) with my WoW guild on their server, and on Monday I got a beta key for Hearthstone. I’m so happy to be well enough to play lots of computer games 🙂 It does mean I’ve been not as social on Twitter and messengers as I was, but it works better for distracting me from the pain and blehness 😛
I’ve also been watching a bit more television. Since the cricket has finished Johan wasn’t watching the big telly in the living room, so he brought the telly in here and he’s now using my old monitor with his computer. This works better for me as I can see it properly and can change the volume (something I couldn’t do before), and it works for Johan as he now has four monitors connected to his computer (two of them are mine). I’ve been watching a bit of Penguins of Madagascar and The Great British Bake Off, so not much concentration needed but they’re fun 🙂
I’ve also been able to be propped up more in bed by raising the head on good days. It’s getting easier and I’m slowly raising how high I am sitting up so that hopefully I’ll be able to do it more. I have to be careful not to go too high though as then I feel really dizzy and faint, and I need to use my neck pillow for support or my head flops. Still I’m happy that I am improving a bit in that area 🙂
The two areas I’m still doing really badly in are movement and touch. I’m still very weak and if I overdo the rolling over (normally trying to grab stuff that’s fallen or slightly out of my reach) then I get a lot of pain and muscle weakness (and often feel dizzy and nauseous as well). Being touched (or having too much pressure on me) causes me a lot of pain and general worsening of symptoms. Having a bed bath will make me feel terrible for a few days so only happens occasionally. The combination means getting out of bed isn’t going to happen unless absolutely essential until I can get a hoist, as at the moment Johan has to drag me (lots of movement and touch which is nearly unbearable).
I’ve tried twice to get to the hospital for my gynaecology appointment. Both times Johan had got me into my wheelchair only for the ambulance people tell us they couldn’t take me. The first time the ambulance wasn’t big enough and he didn’t have the straps. The second time the ambulance was big enough, but again they didn’t have the right straps. Each time we have to rebook the ambulance and contact the department to make sure they have a hoist available incase I need an examination. It is getting very frustrating. The worst thing is if it were at the hospital 5 minutes away Johan would be able to get there- he’s already dragging me into my wheelchair and less than 5 minutes on the bus is actually less stressful than the patient transport ambulance for me (we’re lucky to live in an area with a decent accessible bus service). For some reason though my appointment is near the MetroCentre, which is a good 20 minutes away and means I definitely need an ambulance. I’m also worried about the lack of emergency department there- I hope I won’t need it but I was doing a lot better than I am now when I ended up in A+E from a normal outpatient appointment a couple of years ago, and being so far away from home scares me.
We ended up moving servers again. That was fun (not). Sorted now and I think everything will work out better. Going without my emails for a few hours was hard 😛
We’re also having issues with social services and the care agency not understanding my needs. They don’t understand autism and the need to know what is happening and when. I think I need an advocate. Not got the energy or the spoons to figure it out though (it requires a different type of spoon to those I use for gaming- I’ve tried not gaming to do other stuff and it doesn’t work unless I know exactly what to do and I don’t in this situation). Johan is also struggling so I want to find a support worker to help him. That is also hard and beyond me at the moment.
I bought a new Nexus 10 as my old Transformer was dying. It works so much better than my old one and I’m really enjoying it. Johan is a bit jealous, as he only has the Nexus 7 😛 I was trying to hold out for the announcement of the next one but my communication difficulties when my Transformer was misbehaving and the fact we’ve not heard anything yet meant I just went for the current one. I’m so glad I did though and I’ve ordered a purple case to try and protect it and make it look pretty 😀 I’m also doing well with saving for Christmas and should have no problems there.
Today I am grateful for medication that works (even a little bit), warm penguins, and sunglasses. They help. My friend Kirrus sent me a little penguin and a penguin keyring and some postcards (I think- hoping I not got them confuzzled with something else) in the post which was awesome. Pocket Pennies sent me a purple penguin hat which is very me 😀 Happy Danni 😀