Category: Computers

Danni

Level 25

College, Computers, Computing, Danni, Interface, Real Life

Saturday was my 25th birthday. It went well.

In January I reported my change in circumstances to the DLA people, as by that point I was unable to walk outside at all. They decided to ignore everything I said in the letter, and kept my original award of higher care, lower mobility. While I was waiting to hear from them, I went from being able to take a few steps to not being able to walk at all, so I felt that I should be entitled to higher mobility (for those who are unable, or virtually unable, to walk). I put in an appeal, and they contacted my GP, consultant, then sent out an evil ATOS doctor last week to do a medical. It must have convinced them, as on Friday I received a letter saying my appeal has been stopped as they’d changed their decision and awarded me higher care, higher mobility 😀 My reasons for having higher care have also been changed from mental health (which is much improved, if not completely fixed) to physical care needs, which is more accurate now.

The back payment came in on Saturday, so I sent Johan out to buy my new television. It does iPlayer and YouTube and stuff, as well as being a million times better than my old one, which is nearly dead. It was less than £300, which for a 32″ LCD with internet is extremely good 🙂 It’s also nice being able to operate it from bed 🙂

What else has happened? I’ve still been really ill. I now spend most of the day in bed (about 20+ hours, sometimes nearly 24) at least four days a week. My sleep is a bit all over the place- little things stop me getting to sleep for hours after my meds would normally knock me out, then I struggle to wake up in the mornings (though to be fair, that’s not unusual).

I had my Computing exam. It went better than expected, so I’m hoping for at least a B, despite not being able to remember anything I’d been taught since Easter. I did the exam in the first aid room, but the bed was too high for me to use it. I took some beanbags but ended up not using them either, as by the time I needed to lie down I only had 3 short questions left, so I answered them, checked my answers, printed it off and went and lay on the recliner in Interface for an hour, napping for quite a bit of it. We stayed in a hotel near the college the night before so I didn’t have to worry about the journey in (we got a taxi from the hotel) and it was nice, though I couldn’t get my wheelchair into the bathroom, despite it supposedly being a disabled room. I crawled instead, and let them know when we were checking out.

Apart from that, I’ve not been in college as much as I wanted to. It’s the last week next week, and there’s the leavers ceremony, prom and things. I want to go but will have to see how my health is.

I did manage to make it to Flamingo Land with the college on Friday though 🙂 First of all everything that could go wrong, did. I struggled to get up after not being able to sleep until 1am because there were people talking very loudly outside. We were slightly late leaving because we forgot something, so we missed the first bus by about 30 seconds. The second bus wasn’t accessible, and we got on the third but I reacted badly to a woman’s perfume so had to get off at Blaydon. We got on the forth bus, but were running really late by then. We missed the metro by less than a minute, so ended up emailing the college to let them know we would be late. One of the support staff picked us up from the metro station, which was good 🙂 Then the lift on the coach wasn’t working properly because the road and path are uneven there. It took 25 minutes until I was lifted onto the lift so I could actually get on the coach 😛

After that though everything went well. I got a disabled band and Johan got a carer band, so we didn’t have to queue for the rides. I went on the first roller coaster to see how I’d manage with it, and it turned out that because they had good back support and I don’t get scared I could manage them fine, so I went on a few 🙂 I also got to see the penguins, which was awesome. I’ve been tired since, but overall I’ve not been much worse than I was anyway, so it was more the long day that did it than being at the theme park itself. Luckily it was pretty quiet there.

I went to little Martin’s birthday party on Monday. He’s getting so big 🙂

I am having problems communicating beyond just Twitter and Facebook at the moment. Instant messenger is exceptionally difficult, even with friends, and emails and letters are pretty much impossible to write. I keep losing speech, which makes communicating with the carers difficult when it happens. I am currently creating an Android app that should help with that at least.

I’ve also started project 365. I’ve posted the first two days to Facebook, and I’ll copy them over here in a minute. I’m hoping that taking a photo everyday, no matter how crappy, will give me something to do 🙂

Danni

Crawling Penguins

College, Computers, Computing, Danni, Interface, Mental Health, Physical Disability, Real Life, World of Warcraft

I’ve had an interesting time. I saw my GP. He persuaded me to try codeine again, at a higher dose. It worked… for the first 90 minutes. Then I had the most horrendous stomach cramps- worse than the pain I was already in. So I stopped taking it. A week later, I ended up in A+E because the pain was unbearable. The morphine I was given also gave me stomach cramps. Because the doctor was able to ask what they were like while I was there, I was able to describe that they were like spasms (I have very poor body awareness and also a bad short/medium term memory, so after they’ve finished I can’t remember what they’re like). She had a think, gave me buscopan and it worked! No more stomach cramps. She also gave me tramadol to last a week (well, until the next morning with a prescription for the week) to last until I saw my GP.

My GP took me off the tramadol and put me back on the codeine, with the buscopan. It works, but it turns out not all the tummy troubles were spasms- I still get a really sore, uncomfortable abdomen with the codeine, but without the spasms I’m not rolling around in agony. I’m taking it because my experiment of not taking it failed, but I’m not happy as tramadol didn’t cause the same problems, and worked better. I am aware that the tramadol shouldn’t really be taken with the other medication I’m on though as it can cause fits, so I’m being a good girl (mostly).

Seeing the doctor also made me a lot more ill. He had me trying to stand up and trying to walk, which exhausted me so much, I’ve been bedbound pretty much all the time since then. Yeah, thanks. I’m currently refusing to go back there, as it’s not worth making myself more ill over it. I need more codeine though, as I only had 2 weeks worth from the first time, so I need to figure out a way of getting a prescription without getting out of bed or using the phone. I suspect I may be writing a letter, then asking Johan to take it down there.

I did manage to get out of bed long enough to go to college last Monday, but I couldn’t concentrate and I really wasn’t well enough to be there, as now I can’t even sit up unsupported for a few minutes. I’ve fallen really behind on Computing, especially since my brain is really foggy. It is half term next week though, so I’m hoping to be able to catch up a bit. I also need to do a bit of catching up with Interface work, but that’s not quite as difficult so shouldn’t take too long, though if it’s worksheets I’ll need a scribe as I can’t hold a pen for much longer than to sign my signature.

Some good news though- my laptop has been repaired, and now works mostly okay. It needs a new battery (not covered by insurance) but it lasts long enough, and since I don’t move around much I can keep it plugged in. It also means that when my concentration comes back I can do some Computing work in bed, as the laptop has Windows on it and runs well enough for VB.Net. I can also play World of Warcraft on it. It’s not good enough for instances or raids, but it’s okay for chatting and dailies. It’s also lighter and cooler than Johan’s laptop, so better for me in bed. I’m really happy to have it back.

In World of Warcraft, I’ve completed my first level 85 normal dungeon! Possibly not the biggest achievement, but it felt good and went well. I could tell how healing has changed, and how I need to adapt for when I get to heroics and raids. I also went to ICC and did a ton of hardmodes, and achievements. It was a lot of fun, as with being all level 85 it didn’t require much concentration, and I already knew most of the fights. I’m hoping to be able to do the rest of it with the same group.

My mood has been a bit up and down, mostly because of pain and being fed up of being stuck in bed. Overall it’s good, I just get a bit sad or upset when I can’t do something, like sit up. Johan’s been pretty ill though- he had a breakdown, and his anxiety and depression got really bad, and he couldn’t speak. He’s back on medication to help with anxiety, and has been referred to the CMHT to get help overall. We know the main cause is being under so much stress from looking after me, but he needs a bit of help to get through this patch.

We finally got our Social Services assessments. The conclusion is I should be entitled to quite a bit of help with personal care, and hopefully Johan can get some respite. Eventually, I’ll probably get a personal assistant, who may be able to help me with getting to and from college. That would be awesome. We also have forms to fill in to move house, on medical needs. I need a property which has level or ramped access, an adapted bathroom, and that is generally wheelchair accessible, since it doesn’t look like I’ll be walking any time soon. When we have moved, I’ll be getting an electric wheelchair if my appeal for higher rate mobility is successful, which would be awesome, as it would give me so much independence.

I’m trying to think of things that I can do in bed, that won’t make me any more ill. I really need to spend less time on my laptop, and I can’t concentrate well enough to read, so I’m thinking of maybe getting some crafty stuff like beads to work with for when I’m not napping. I’m hoping that I’ll be able to get up and maybe go out soon. I’m on day four of not biting my nails, so I’m hoping to get some nail varnish and things to make them pretty 🙂

I’ll try not to take so long over my next blog post 😛

Danni

Tomorrow Never Comes

College, Computers, Danni, Physical Disability, Real Life

Yesterday I promised words. Problem is I didn’t know then that I’d be feeling like a skyscraper had fallen on top of me. Yay colds! So instead of going to college (things to work on- feeling guilty when I don’t go in) I stayed at home and rested. In bed now on the laptop so I can type this.

On that note, Annika (my laptop) is very ill. Vista (yes, I know, but she came with it) doesn’t boot at all, and the DVD drive doesn’t work so I can’t repair it. Oh, and there’s a highly reproducible fault where if it’s past the POST check and you press the DVD drive in, it switches off (happens both in Vista and Linux). Also, the charger is now unreliable and has to be in the exact right position or it doesn’t charge. Tomorrow I will be asking Johan to call the repair people to see if they can sort it out. I do pay for it, so I may as well.

I will see how I am tomorrow before deciding on college. If anything like today, it’s not going to happen. Sleep now, though.