Category: Computers

Danni

I Want a Bath

Autism, Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

I think I’m over the worst of the relapse. It never got as bad as in December, in that for some of the day at least I could tolerate small amounts of sound and some light with sunglasses on, and never stopped drinking, but I still was very ill and my arch nemesis the bed pan was brought back into action when trying to use the commode made me much worse.

There are some residual effects. Because I was moving much less than is normal for me (not that I move much anyway, but during the relapse I was only moving every 3-4 hours to adjust position as that was all I could manage) I got severe constipation. When I started moving again, so did my digestive system and the pain involved was immense, as it aggravated my hemorrhoids and I think I may have torn the skin as well. Luckily we had some Orajel in and that helped (I checked online that it was okay to be used that way). I think for next time I’m going to ask the doctor for some laxatives to be taken during a relapse so it never gets to that point (it was the same after the December relapse). Johan went to my doctors appointment on Friday and the doctor is going to ask the CFS Clinic about stronger painkillers for relapses, as I can’t have oramorph and tramadol just isn’t strong enough (for my normal levels of pain tramadol is my wonder drug- takes the edge off it so I’m able to do stuff and concentrate on things other than pain).

I’m still not great. On Friday evening I was able to go on my computer for a bit so played World of Warcraft, which made me very happy 😀 Unfortunately since then I’ve been stuck in bed again, as just been really weak and bleh. Luckily double tramadol is enough for my pain now so that is good. My sleep is also all over the place so that’s making things awkward for Johan.

The biggest thing I want now is a bath. Of course, at this new flat we don’t have one, and there’s still another 5 weeks to go until the shower is usable. I haven’t had a proper wash for nearly 3 weeks now, and my hair is also very greasy. I’ve been meaning to have one since Friday (which was the first day I was well enough to be able to tolerate one) but with me sleeping all day and Johan having brain explosions we’ve not got around to it yet.

Having a wash for most people isn’t a big task, but for me it’s one of the harder things to do. It’s one of the areas that autism and dyspraxia makes things harder than it would be if I only had M.E. Because I’m touch sensitive, being washed is very overwhelming, so I can only do it lying down (that’s been the case for about a year now, even when I was able to go out and about). Luckily my smell sensitivity isn’t as bad as it can be, so I when I am washed I use some things with nice smells, such as my cherry almond shampoo (reminds me of bakewell tart) and coconut body wash. When we had a bath I used to lie down in it using the reclining bath seat, have my hair washed (either by a carer before we sacked them or by Johan) then I’d soak in the water to clean most of me, using body wash on my face and selected other areas. As I wasn’t trying to wash everywhere directly, I was able to do the washing my body bit myself most of the time which gave me some independence.

Now we don’t have a bath, I have to wash in bed (there’s nowhere in the bathroom for me to lie down yet). We have a bed shampoo thing, so Johan washes my hair in that and tries not to knock the bucket over and soak everything on my floor 😛 After he’s washed my hair (I’m currently using a 2 in 1 shampoo and conditioner to make things easier) he washes my body. I normally do my face but the effort of that is normally me completely exhausted, so Johan washes the rest of my body. Some days I’m not well enough for all of it to be done, so he concentrates on the smelliest areas. Then I rest. Of course I’ve missed out the bit where Johan has to fetch everything and bring it into my bedroom, which sometimes makes his head explode. It’s a massive task and I try and have my hair washed every week or so (with a full body wash) but sometimes my illness gets in the way.

Because of the problems Johan is having, we’re getting carers in again. We’re giving up on direct payments for now as neither of us are able to manage the paperwork yet, so we’re going back to commissioned care. As we’ve moved to a more central area, there are more agencies covering where we live so it will be easier to change if things don’t go well, but the old care company don’t operate in this area so we’re hopeful. This time we’ll be able to tell them what doesn’t work for us and how they can help us from the beginning, so that should make things easier as well.

We’re also going to be having council cleaners to come in and help, which we’ll pay for ourselves. This will be a massive help for Johan as he’s just overwhelmed with everything at the moment. Our social worker had forgotten that we’d asked for this already but we’ve told him again so hopefully that will happen soon. I think if Johan knows that we’ll be having someone come in every week to do the bulk of the cleaning it will take the pressure off and he’ll be able to do some of the easier things himself.

Things aren’t brilliant but they could be worse. Of course I’m aware that just being eligible for carers makes me very lucky, though it’s because I’m severely disabled and if Johan breaks down again I’ll have to go into a care home, which is more expensive for social services and which we don’t want (my current care needs are classed as substantial).

Now I just need to improve. First step, having that wash (hopefully today), then maybe soon I’ll be able to go into the living room again. I have some orphans to take around Azeroth 🙂

Danni

Dead Drive

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

As I write this, my blog is not working. On Sunday night as I was typing up another blog post (which I may or may not post- some of it is no longer relevant) the server this blog is hosted on suddenly died. Some quick diagnostics showed that the main hard drive was dead (at least we think so- fsck on that drive would cause a kernel panic, which is not normal behaviour). Due to various issues it took until Tuesday to get a new drive in and the operating system installed. As my emails go through the server, we set up a temporary account so that my normal email forwarding would work again. Luckily it seems I’ve not lost many- most of the important ones from Monday and Tuesday seem to have come through, along with lots of unimportant ones from Sunday, Monday and Tuesday.

All the accounts on the server had been backed up on the 14th (the weekly backup), and I have a database backup for my blog from the 15th. Once the backup drive is reconnected all the accounts will be restored, and that will mean my blog should work again and I’ll be able to post this. That should happen later today (Wednesday). It’s very frustrating, especially since I’m no longer well enough to sort it out like I used to, which would have sped things up a bit (Colin working is one of the reasons it took a while to sort out).

Normally my email system makes me happy. Everything is backed up on the server, then it gets forwarded to GMail. So long as the server is working, this means I have two copies of all my emails, which means that should I lose access to my GMail account it won’t be anything more than a minor inconvenience. I may need to rethink it after this though. I don’t mind massively my blog being down for a few days, but I’m going to start keeping my own backups on my computer so if something like this happens again I’d be able to move it quickly if needed (which would also solve the email problem as I could set up the forwarding again from wherever I move it).

Apart from the server playing up so I was without access to my emails for a couple of days and my blog for three, I’ve been doing not brilliantly. I think I’m relapsing a bit. Monday I slept for 20 hours, which meant I didn’t eat. Tuesday I saw the nurse, but wasn’t well at all and couldn’t hold my head up, which was very uncomfortable (the harness held my body up so I wasn’t slumped anywhere near as much as I would have been otherwise). I’ve also been in a lot of pain- at midnight I took two tramadol (I can normally manage with one) but I’m still in too much pain to sleep, despite being sleepy enough. I managed to go on the computer for a bit on Tuesday evening to sort things out, do a Tesco shop and manage a couple of easy quests in World of Warcraft, but it was a bad idea really as I’m paying for it now. Before that I’d not been out of bed since Friday night, other than to see the nurse. I’m mostly bedbound again.

So, seeing the nurse. We’re about 10-15 minutes pushing distance (took about 10 minutes to get there, 15 minutes back) from the doctors surgery, and my head was floppy the entire time, which was very annoying and uncomfortable. It turns out the appointment was an hour later than Johan thought, and by the time I got there I was feeling really ill. The nurse was able to squeeze us in though so I didn’t have to go back. We went in and it was fine. She noticed my penguins and told me see had been to New Zealand and seen some there (good move- talking about penguins automatically makes me calmer) and then we went through some of the registration questions (Johan had told her about me at his appointment so I didn’t have to answer all of them). She told Johan off for not taking in his urine sample (he’d forgotten) but it was in such a nice way he didn’t feel bad. I told her my height and weight as they don’t have the facilities to do them if you can’t stand there, and she didn’t ask to take my blood pressure or anything probably because she could see it would have been too much for me. She told me if I needed a home visit at any time that is no problem (she knew from me having to cancel last week that sometimes I’m too ill to get to the surgery) and also said she’d ask about a wheelchair assessment for me. We likes her a lot 🙂 It definitely feels like a community doctors, where everyone knows everyone (the nurse said that she was glad I’d made it in because now she could put a face to a name and she never forgets anyone) and I was spoken to in a very warm, nice way that wasn’t patronising. When we got home Johan hauled me onto the bed as I wasn’t well enough to get myself on it (not paralysed for once, just far too weak and uncoordinated) and I rested for a few hours.

Johan also went out to get a blackout blind for my bedroom. If I am starting to relapse, then this will be important to keep my room dark and try and reduce the amount of symptoms I’m getting (I’ve had periods where I’ve had to wear sunglasses in bed already). It will also help as my sleeping pattern is completely broken so sometimes I can’t sleep until it’s already light. The blind is purple so will work well in my bedroom 🙂

There is so much I want to do. I want to read. I want to go out more. I want to be able to watch my favourite television shows, not just the ones that don’t overwhelm me or don’t require my concentration. I want to be able to tidy my bedroom 😛 Maybe one day.

Danni

I’d Like To Be A Tree

Computers, Danni, Gaming, M.E., My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Danni in TGI Fridays

I’ve been out a few times in the last three weeks, and I’ve been further each time. On Monday I went into Gateshead to change my address with the bank, and also looked around the shops and bought a few items, including some long stripey socks 🙂 On Wednesday I was feeling really well for me (no payback!) so we went into Newcastle, looked around some shops (hunting for some Pony hair accessories, but we went into the wrong H&M and the right one was closed a couple of hours early) and then went to get some food at TGI Fridays in the Gate. It was brilliant, especially since I got to go on the Metro on the way home and see all the bridges lit up 😀

In my last post (if you could understand it :P) I complained that I couldn’t sit upright as I was too floppy, but otherwise was well enough to do stuff. We discovered that if we tied me upright in my wheelchair, I could go out 🙂 The first time we used a scarf, then when that worked we bought a proper torso harness which does an even better job. Because I no longer have to put all my energy into remaining upright, being outside, travelling and stuff is doable.

I’m loving how much I’ve improved in the last few weeks. I can go on my computer for as long as I want (was 7 hours yesterday, which may have been a bit too long as my bottom was very sore by the end of it :P).I can cope with noise and light even better than Johan a lot of the time. I’ve been able to reduce my painkillers as pain is mostly at a bearable level now and I can use distractions such as computer games to deal with it. I’ve gotten out of bed every day for a few weeks now I think. I can watch some television.

There are a couple of things that are frustrating me though. The first is that cognitively, I’m still not doing great. Conversations, reading lots of text, remembering things, concentrating on stuff- all are now more difficult than going outside. I got frustrated while in Newcastle because I wasn’t able to direct Johan where I wanted to go. The CFS clinic people came out a week and a bit ago, and the half hour conversation (with me lying in bed) absolutely exhausted me, and I got payback from it. Johan talks to me but half the time I don’t know what about, or don’t hear him because I wasn’t able to concentrate on what he said. I can’t keep up with Facebook and even struggle with Twitter. It’s frustrating as I feel like I’m not aware of what is going on because it requires more brain power than I seem to have. I even suck at playing World of Warcraft, and other people are noticing that I’m making stupid mistakes or losing concentration.

The second is that I still can’t care for myself. My hands are stupid- I can’t reliably hold things as they either cramp and spasm or they just drop things. This means I can’t wash myself, get dressed by myself, use cutlery properly, hold a cup most of the time, write, or do anything else that requires the ability to hold things reliably. I’m also really weak so repetitive movements such as those required to feed myself (holding things in my hands is easier than cutlery, though I still drop stuff) exhausts me to the point where Johan still has to take over at times. There’s a part of me that’s saying what’s the point in being able to go out if I can’t even look after myself.

Earlier I was on the computer playing World of Warcraft, doing Raid Finder with some guildies. Johan went to the shop to get some fish and chips (compulsory on Good Friday) and I was eating them when suddenly my body decided it had enough and I almost fainted. Johan got me on the sofa and I spent about 15 minutes struggling to stay conscious while my body jerked and spasmed, then it stopped and I was “okay” again, apart from being extra tired. It was as if it was saying no to sitting upright (not wearing the harness as the seat reclines and that’s normally enough for me), eating and concentrating at the same time. We initially thought it might be payback from Wednesday but as I recovered so quickly that didn’t seem to be the case. Was odd, but it’s not the first time my body has suddenly protested like that.

I want to read and comment on blogs more but that’s too much for my brain. In the meantime, this is the song I’ve been listening to lots (which is the inspiration for the post title) 🙂

Danni

Exploring the Darkmoon Faire

Computers, Danni, Gaming, M.E., Physical Disability, Real Life, World of Warcraft
Danni in Transmogrified gear.
Danni in Transmogrified gear.

I’m still improving physically. Sitting in my computer chair is no longer a problem, and I can manage it for several hours without getting any worse. The only problem is movement makes me very ill, so if I try and go in my wheelchair to the bathroom I start feeling really dizzy and sick. As the bathroom is quite a distance away by wheelchair thanks to how big our rooms are, I’m using the commode for now. This also has the advantage of me being able to use it when I want without asking, as I can transfer by myself again 😀 (Johan says emptying it isn’t any more difficult than pushing me into the bathroom, so he doesn’t mind).

Cognitively I’m not doing too brilliant. There’s been a slight improvement, but writing emails is beyond me, as is understanding Facebook. I am however managing to play quite a bit of World of Warcraft, and since I’ve not been on for ages I have lots to catch up with. This week the Darkmoon Faire is on, and they’ve changed it since the last time I was there (the changes were in place last month, but I was too ill to see it then). It now has its own island, lots of games and quests, and I’ve been having a lot of fun with it 🙂 My favourite game is the ring toss, as I never need more than one token for that 😛 Also available there are replicas of some of the sets no longer available, including the Devout set I want for Danni, my priest. I’ve managed to get enough prize tickets for the robe, and have done some transmogrification of other items to match it while waiting to get the other items in the set. I may keep the witch’s hat though, as I like that 😛

I’ve also been doing quite a lot of heroic dungeons on Danni, as the new ones are very short and easy, and (as I said to one of my groups) it doesn’t matter that I’m now rubbish at healing because no-one dies anyway 😛 I’ve also ran a bit of Raid Finder, which is interesting but requires more concentration. I am definitely a lot worse at healing than I used to be, and was normally one of the bottom healers, but it was fun and no-one yelled at me, which was good.

Since I’m now able to sit up and do more, I’m going to start making lists of things I want to do. I have television programmes I want to catch up on, lots of things in World of Warcraft I want to do, and films I want to watch. I also have blog posts I want to write, but my concentration isn’t there for them. I’ve got a couple of them in draft form that I’ve started, so I may have a look after this to see if I can finish one of them. I’ve also still got two emails to write, so maybe they should come first. I phoned Sammie on Monday and that went well, so I’m hoping to phone her every weekend to see how she is and things. I’m going to buy a stereo Bluetooth headset for this as I’m finding it hard to hear her a lot of the time and being able to hear with both ears may make it easier.

I’m not sure how I’d describe my M.E. right now. It’s nowhere near as severe as it was, but I’m still housebound and mostly stuck in one room, especially since moving makes me feel so ill. I only manage to get on my computer as it’s very close to the bottom of my bed, and I can go straight from the bed onto my computer chair. Once I’m in my computer chair I’m reluctant to get out of it again as the moving between chair and bed also makes me very dizzy and nauseous, though it eases off quickly once I’ve stopped moving. I’m able to eat okay, and even manage a spoon sometimes 😀 Being able to sit up though (even in my reclining computer chair) is brilliant, and playing games online (both World of Warcraft and The Sims Social) is a brilliant distraction from the pain and how ill I feel.

I’m also very happy at the moment. Some of this is being really grateful for what I’m able to do now, and for any improvement. Me being happy is also helping Johan’s mood, which is great. I still have the occasional meltdown, but that’s mostly due to sensory overload and is over quickly. Most of my penguins are now sitting on the sofa, as my single bed isn’t big enough for them all and I can see them from my bed there. Tomorrow bidding opens again for more council houses, and we should get somewhere soon. Our urgent priority is for two bedroom bungalows or ground floor flats, with step-free access and a level access shower. We’re not too fussy on where we move to so long as there are decent bus links, but ideally I want to be along Durham Road or close to there because it’ll be so easy to get to Gateshead and there are normally a lot of shops and facilities. The two bungalows I bidded on over Christmas were both in Birtley, which would be awesome (I also bidded on a three bedroom house in Blaydon, but we won’t get that even though it’s adapted- it was the most suitable of the other choices though).

Somehow this outpouring of thoughts has gotten very long. How come I can type really long blog posts in not very long (about 15 minutes on this one) but not short emails or blog posts on important subjects? I don’t know 😛

Danni

Brain Fail

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

I want to blog. I have lots of subjects I want to blog about, and even a couple of drafts. My brain its not cooperating with me though so it’s hard for me to write.

I enjoyed Christmas. I’m mostly over the relapse that made me very ill, and back to my “normal” level of functioning. I’m completely nocturnal at the moment, but that’s okay as I have no real need to be awake during the day. I’m sleeping when I’m sleepy, eating when I’m hungry (including lots of chocolate, but it is Christmas), sitting at my computer when I feel up to it and generally listening to my body. I’m also happy.

Facebook is feeling too much for me at the moment. I’m playing a bit of The Sims Social, but trying to keep up with my friend’s statuses is just confusing me. I’m managing Twitter better though, so if you like you can follow me on there @Dannilion.

I know I’ve said this lots recently, but thank you to my friends for being there for me. I really do appreciate it. Thank you also to Johan, who has been doing a remarkable job of looking after me, both during and after this relapse.