Category: M.E.

Danni

NaBloPoMo, Annika, Windows 8 and Stuff

Autism, Computers, Danni, Gaming, M.E., NaBloPoMo, Penguins!, Physical Disability, Real Life, World of Warcraft

I’m attempting NaBloPoMo (National Blog Posting Month) again this year. That means I’m going to try and post something everyday this month. Now, because I’m not very well I’ve decided that I’m going to try and get slightly ahead- I have a few draft posts that I’m going to try and finish so if I’m having a bad day I can just post that. I’m also undergoing Project Upgrade Annika. Annika is the name of my laptop 🙂 After realising that it was going to take a while for me to find a replacement (and there are always other things that require the money first) I’ve decided to try and make my current one work better. So far I’ve upgraded her from Windows Vista to Windows 8, and increased her RAM from 2.5GB to 4GB. Changing the operating made a massive difference to start with- she ran a lot faster and programs that she used to struggle with or be unable to run (such as World of Warcraft) now run more like they’re meant to. I’ve not really seen the benefit of the RAM increase yet as it was only done yesterday and I’ve only been using it a couple of hours for web based stuff, but it should help when I play games and things as 1GB is allocated to the graphics card now.

Windows 8 is interesting. I’m trying the Metro interface (yes, I know it’s not called that now but it is to me) and on a single screen laptop, it actually doesn’t work that badly. I have Start 8 if I need it as I bought Object Desktop for Fences and WindowBlinds and Deskscapes for my desktop, but I’m doing okay at the moment. I have noticed a bug where if I swap between the Chrome app and the desktop app, Chrome crashes when I switch back, but as I can restore the tabs it’s not a major issue and until it’s fixed I’ll just make sure anything I’m editing is saved.

Danni as a Penguin Fairy PrincessFor Halloween I dressed up as a Penguin Fairy Princess. I wore my penguin onesie, my purple tutu, and Penguin wore his matching tutu. I considered getting wings but I couldn’t figure out how to wear them in the wheelchair. Penelope borrowed Erica’s dress as she wanted to get dressed up too. I was very happy 🙂

We only got one trick or treater, so now I have a bucket of chocolates to eat (with Johan to help). This isn’t going to be a big hardship, as they’re all chocolates I like. I’m trying to convince Johan to watch The Nightmare Before Christmas as it’s an awesome film, but he’s being stubborn and saying no.

I have discovered I can manage watching Star Trek: Voyager! It helps that I’ve seen it all before so I know what happens and it’s easier to follow. Johan doesn’t want to watch it as he’s scared he’ll get obsessed, as he’s watched clips on YouTube and seen why I like it so much. This makes me very happy.

My DLA form is getting there. I hope to get it all completed and sent off next week. Johan has some typing up to do and I’ve got some supporting evidence to copy and send, but hopefully if they read the form I should be okay. I’m going to pay to send it special delivery so they can’t claim they’ve not received it, and will make sure I keep copies on my computer (I’m going to be typing all the answers anyway but will have it all together). I found my first DLA form on my computer the other day- I think the older form was actually a bit easier, as they had a separate category for falls and blackouts, and a lot of the boxes were more flexible.

Johan had his flu jab yesterday. He got diazepam off the doctor in advance, and managed it without too much panicking from what he told me. I was asleep as I slept 15 1/2 hours yesterday- longer than I was expecting but I really needed it. He fell asleep when he got home, but when he woke up again he didn’t have any anxiety and felt up to going to the local pizza shop for our tea (he didn’t trust himself to cook). It seemed to have worn off when he went to sleep again this morning, but he was happy and that made me happy 🙂

I’m still spending as much time on my computer in World of Warcraft. I do dailies and I’m trying to make some money on the auction house with my tailoring. As I don’t have the high level enchants yet I’m not putting them up yet, but I’m also keeping an eye on cooking materials and food so I can make some gold with them. At the moment I’m saving my Ironpaw tokens to get a cooking bell, which means I’ll get my own cookery student. That will be fun 🙂 As I have the Tillers at Exalted now and everyone is my best friend, I have 16 farm plots, which I’m mostly using for Motes of Harmony at the moment to make Imperial Silk for my tailoring.

The daily quests I’m currently doing are The Tillers (quick and easy and fun), The Anglers (easy, fun and I’m only revered with them), The Klaxxi (currently revered and the Enhancements and Augmentations I have are fun) and Golden Lotus (currently honoured but within a couple of days of revered). When I get Golden Lotus to revered I think I’m going to drop Klaxxi and maybe Golden Lotus temporarily so I can concentrate on August Celestials and Shado-Pan. I will be getting all the reputations to exalted at some point, but I want to make sure I don’t overload myself with dailies and burn out. I’ve already got the Cloud Serpents to exalted as well as the Tillers, which makes me happy 🙂

Danni

Autistics Speaking Day: When Other People Don’t Get It

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

This is the third year I’ve participated in Autistics Speaking Day. My previous posts are here (2011) and here (2010) and the main website is at http://autisticsspeakingday.blogspot.co.uk/.

Being autistic causes me a lot of difficulties, but most of them aren’t related to being autistic itself; instead, they’re because other people just don’t get it. When I’m verbal (which is now a sometimes thing rather than a normally thing) I normally speak rather fluently and have a large vocabulary, so people assume that I can talk well all the time. They also assume that I’m able to understand things the way they can, and can respond the way they would. When this doesn’t happen (because I’m autistic and have M.E. and my verbal communication is variable) they assume this is because I don’t want to, rather than because I can’t.

I make a point of telling people (or having Johan tell people) who need to know (carers, social workers, doctors, nurses, them sort of people) that I have communication difficulties and that sometimes I may not be able to understand or respond in a typical way. I tell them that this is because I’m autistic and that M.E. complicates it. Some people understand, and know that it means if I’m not responding normally, or need to type, or need to be left alone as I can’t cope that it’s okay, and give me extra time or ask Johan or reword questions. Those people (often carers, and a couple of nurses) are awesome and we likes them very much 🙂 Some others don’t understand initially, but then ask questions and then figure it out. Those people are also awesome, as they’re willing to take the time to learn. Some of those people have told me it’s helped them in other situations, so it’s good for all of us. We likes them very much 🙂

Then there’s the people who for whatever reason, decide they know better. When I have difficulties with communicating (or dealing with sensory stuff, or understanding things) instead of remembering that we’ve told them this can happen, or asking us questions to sort things out, they assume I’m doing it on purpose, or it’s because of psychological reasons and that yelling at me or belittling me will help. Those people we don’t like very much. Some of them have apologised when either Johan or I have been able to explain what happened, but others (often but not always doctors) are certain we’re mistaken and they have it right. They make many problems.

So, what can people do? If you’re told that someone is autistic, or they have communication difficulties (even if only occasionally), believe them. If you don’t understand how you can help them, ask. Autistic people and their carers will often have developed strategies to deal with their difficulties, and will often be able to tell you how best to communicate. If they ask to tell you at another time, or to get back to you, accept that and don’t push it, because a lot of autistic people have anxiety or other issues that mean they might struggle with answering questions spontaneously, and being pushed can make their anxiety or their communication issues worse.

Also, don’t make assumptions on ability based on how they are at any one time. Both Johan and I find that our ability to do things varies from day to day and from hour to hour, and that something we might accomplish with ease at one time may be very difficult or impossible at another time. This is quite normal for autistic people, and doesn’t mean they’ve “regressed” or that they’re not trying hard enough or are lazy or anything like that. That can go for pretty much any activity, including speaking and communicating.

For me personally, I try to communicate verbally when I am able to. If I can’t or it’s a struggle, then I switch to typing (either on my tablet, or on my iPhone). Sometimes it can take me a long time to respond to a question, or I may forget what I’m saying/typing in the middle of it and get very lost. Sometimes I need the person speaking to repeat what they’ve said as I’ve lost track or forgotten. If my M.E, is playing up badly and I can’t cope with light at all (even with sunglasses) then I might not be able to communicate other than by making gestures or possibly spelling words out on Johan’s hand with my finger. There are times when I can’t understand anything that anyone is saying, and I get very confused and scared. If you’re trying to communicate with me, then please accept it might not go well at all times, but I really appreciate it when you try to make it easier for me.

To those of you who make an effort to understand those of us who have difficulties with communicating (or any other task for that matter), thank you.

(I’m having some severe cognitive issues at the moment, caused by the combination of autism and severe M.E, so if there are any mistakes in this blog post please let me know and I’ll correct them. Thank you 🙂 )

Danni

Silly Danni

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

Danni as a PenguinI just wrote a long blog post about World of Warcraft: Mists of Pandaria. Then I deleted it instead of saving it. As I’m on the Android app, rather than the website, that means it’s gone (there was a delete confirmation, but I mixed them up and pressed yes rather than no). I’m making lots of these types of mistakes recently. Bah. I might rewrite it, I might not. The summary of it is I’m really enjoying it, and so happy I can play it and it’s something I can do with Johan and my guild.

I’m having a lot of cognitive problems. It seems every time I relapse, I lose more cognitive ability, and up to now have not regained any of it. This was the worst one. It’s a strange thing as it’s inconsistent and unreliable. I’ve managed to read a couple of nonfiction books, but I can’t remember much about them. I can’t concentrate on a television show, so if I have it on at all it’s basically reality television or old quiz shows. I want to watch Doctor Who but I can’t follow the plot so get frustrated. I’ve been attempting my DLA form, but it’s been making me worse cognitively and I’m scared it’s going to lead to another relapse so I’ve asked someone who is good at forms to help me next week. Johan is having to take over the stuff I normally manage, like online food shopping. He’s noticed I’m not able to concentrate on a conversation now.

My memory is shot to pieces. I get very confused, and that makes me scared. Most of the time I have no clue what day or time it is, even though I check constantly. I’m not even keeping up with Twitter which is normally easy for me. Yet I can manage playing WoW. It feels really strange that it’s so inconsistent. It might be because they require different skills, and the ones I use for playing WoW aren’t as badly affected as those I use for conversations or managing shopping. This may also be part of the mix of autism and M.E, as being able to use one skill but unable to use another seemingly related but different skill is common in autism, and for me has always been an issue, and the M.E is making it worse by affecting pretty much everything.

It is scary to feel stupid, especially when intelligence was previously one of my strengths. When the CFS team were here I told them I was having to ask Johan for really simple things, like what’s 5 +7, as I can’t figure it out myself. I’ve got a qualification in AS Maths – this used to be easy for me. There’s not much the CFS team can really do- if it continues to be a major issue they can do testing, but they’re worried that’ll be too exhausting, since even short conversations can take everything out of me. The physiotherapist has written a really supportive letter for my DLA claim though, which should back up what I’m saying. It’s hard seeing it down on paper though just how disabled I really am- even though I live it, and try to blog about it, to see someone else writing about how I require Johan to support me in everything, how I’ve been bedbound much of the time- it’s confirmation and it’s scary.

My mental health isn’t great at the moment. I’m not depressed, but emotionally I’m not coping as well as I can be, and I’m getting a lot of flashbacks from things from the past that are very scary. Overall my mood isn’t too bad, and I’m still mostly positive and happy, but it does get me down, especially the confusion and the flashbacks. Late night/early morning still tends to be my best times, though Johan does need to sleep and I really want to try and be on a decent sleeping pattern. I can’t force it though.

I now have the care call system set up. They tried to do the annual check and discovered it wasn’t connected, though we’ve been paying for it since we moved in. There were lots of problems, and the beeps and the loudness of it made me feel very ill while they were trying to sort it out, and I ended up needing an anti nausea tablet that through my sleeping pattern off completely. It’s sorted now but we do need to ask them things, like what exactly do we use it for (we’re autistic, so things that may be obvious to other people aren’t necessarily to us and we’d feel better if we’re told) and can they make the random courtesy calls less random please, as they make me panic. We also have some information we think it’s important they have, like I can be non-verbal. It is good though as it means we’ll both feel better if Johan goes out as if something happens I can press the button and they can contact an ambulance or whatever for me. It’s also connected to the fire alarm, so if it goes off they can contact the fire brigade. It also means if something happens to Johan, I can use it to summon help.

Good things though- I can play World of Warcraft. I’m looking forward to Halloween, where I’m going to be a fairy penguin princess 🙂 I’m wanting to see fireworks- either the official display if I’m well enough to go out, or watching from Johan’s window if I’m not (he’s got an amazing view right across the valley from his window- I get my tree from mine :P). I have a penguin onesie- completely impractical but I love it (and even saw the CFS team wearing it). I can eat solid food. I can sometimes use my fork. My friend Vivacia Dreams sent me an awesome penguin hat. I’m hoping to have Sanabitur Anima visit me soon. I can read non fiction. I’m not in relapse. I’m very very lucky 🙂

Danni

Doughnut Cushions and Purple Lights

Autism, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

I’m coming out of the relapse I mentioned in the last blog post. It was a very bad one, involving a hospital stay and being very ill for a couple of weeks. I’m hoping to blog about the hospital stay soon, but my brain isn’t up to it yet.

This relapse was different to the previous ones as it was the first one where I actually asked for medical help. There was a good reason for this- my pain levels were unbearable and it was making me consider death as an option (this wasn’t depression, purely an inability to cope with pain). My GP wouldn’t help, but the hospital did by giving me morphine a few times, after which I no longer needed it as the tramadol was working to keep my pain bearable again.

As is normal during a severe relapse, I had problems with various things. I was non-verbal much of the time (including the entire hospital stay), I was unable to chew, struggled with swallowing much of the time, and was completely unable to sit up so I had to use the evil bedpan. I also was unable to deal with much light or sound, and I spent a lot of time sleeping. Then there was being unable to move or communicate except by breathing loudly at times which wasn’t exactly fun, and other times spasms were really bad (though not as bad as some previous times, luckily).

It’s hard to convey just how little I was able to do in writing. I needed someone else to feed me, put my medication in my mouth or roll me over in bed, on top of my normal care needs such as needing to be washed, teeth brushed, pyjamas changed, penguins heated, things brought to me and placed in my reach, all of which I rely on other people for. On top of this I needed Johan to interpret my attempts at communication when unable to type or speak. All my normal symptoms were a lot worse than they are normally, and even though the tramadol was making the pain bearable, it still was a lot of pain to deal with. I was lucky that some of the time I was able to use my tablet (on lowest brightness with sunglasses on) some of the time so I was able to use the internet and type to communicate when I was feeling up to it.

As I couldn’t chew (it drained so much energy it meant I was unable to swallow what I’d just chewed) I ate yoghurts, smoothies, soups, and pureed food. As swallowing was difficult and exhausting, I could only manage small amounts. This meant I lost a lot of weight during that time (I’m still in the normal BMI range, but if I lose much more I’ll end up underweight and it’s been obvious to my carer). 

Due to this I was having issues with my hips getting sore lying in bed (and trying to develop pressure sores- I got a sore, red hot patch, but no breaking of the skin which I’m grateful for). We tried a few methods to take the pressure off- lying me on a pile of pillows (it helped for one night), and buying a doughnut cushion, recommended by someone on Twitter. It was hard for me to use as it made me feel rather unbalanced but it is a good idea. We also bought a double quilt for my bed, so I could lie on a quilt to make the bed comfier. That helped a lot. I’m now lying on the single quilt I already had and using the double quilt on top of me, which is making me feel very cosy 🙂

I also bought other items to help us during the relapse (I’m grateful my DLA came through when it did). Special wipes to make cleaning me up after using the bedpan much easier. A purple clip on LED light that meant I could look at things without it being too bright (which Johan loved so much for searching for things in my room that I ended up getting him one, too). A new eye mask that completely blocks out light, after discovering in hospital mine wasn’t good enough. Some frozen pureed meals so I could have something nice to eat (Wiltshire Farm Foods do them- they actually taste really nice for pureed food). Talcum powder to help stop certain areas getting sore. A longer extension cable so I could move my lamp so that Johan and carers could actually have some light to see by when they were dealing with me (I could manage it for short periods while wearing my sunglasses).

I coped with the relapse with a lot of help. My friends on Facebook and Twitter were really supportive, with lots of offers of help and lots of squishes. They really helped to keep me going 🙂 I had Penguin and Penelope with me all the time, even when I was in hospital, and they made me happy even through the hardest bits. My awesome morning carer helped by doing the little bits of personal care I could manage quietly, and talking to Johan when I couldn’t manage anything. And of course, Johan was there all the way through, supporting me, looking after me, and being generally awesome.

I’m now doing quite a bit better. I’m still very weak and brainfoggy, but I can get in my wheelchair (yay for recline and tilt in space!) and go in the living room. I’ve been able to play a bit of World of Warcraft Mists of Pandaria, which I’m loving and is a great distraction from the pain and my other symptoms. I can eat solid food again, which means I’m wanting to eat all the things! (but I still have a very small appetite so not eating enough yet- I’m hoping the nausea will ease  off enough soon so I can eat more). My first non-liquid/pureed meal ended up being quail from the local Lebanese restaurant (they do deliveries too). It was very nommy, though Johan kept calling me a posh git 😛

I’m not well enough to go out yet, but that will come in time, hopefully. My sleep is still a bit all over the place- ended up getting 18 hours yesterday, and I woke up yesterday afternoon and I’m still awake writing this at 9am. I do have a couple of things to sort out now I’m a bit better. I’ve got my DLA form, which I haven’t started yet and will be hard, and I’ve got my room to sort out as it got rather messy during the relapse. I’m going to put all the relapse stuff in a box so they’re not in the way but easy to get if I relapse again. As much as I hope not to, I’ve got to be open to the possibility. I also need a blood test before I see my consultant so need to ask the nurses to come out and do it, as I don’t know how long it’ll be before I’m well enough to get out to the surgery.

The cause of this relapse was excessive noise from one of our neighbours and their visitors (massive amounts of shouting and banging). It’s scary that half an hour of too much sensory input can make me so ill for so long. It has been reported and our neighbours are being given a formal warning (another neighbour has also complained, and we’ve complained before so it’s not a one-off) so we’re hoping it doesn’t happen again. We don’t want them to be in trouble, but my health needs to come first (as does Johan’s, as it affects him, too).

I’m grateful that I’m doing better. Being able to go into the living room and play on my computer is just brilliant. When I get a bit better I have Doctor Who to catch up with (I think I saw the first two before the relapse, and kinda listened to the third when my relapse hadn’t got that bad). Watching television is harder for me than playing World of Warcraft, as there’s more movement and conversations and a plot to follow, and in World of Warcraft I can check things if I get lost (plus I have it all set up so it’s easy for me- lots of text notifications and warnings and stuff).

The only problem I’m really having at the moment is I’ve lost most of the padding from around my bottom, so sitting in my wheelchair makes my bottom sore. It’s a really comfortable wheelchair with very thick, contoured cushions, and I’ve never had problems with it before even when in it all day. I think I’m probably more susceptible to pressure now though, so I’m going to have to mention it when I go for my wheelchair assessment. In the meantime I’m using my doughnut cushion, but that means my head doesn’t get quite as much support as I’m too tall for the chair and it makes me even higher, so I take it off after a bit to give my head a chance to rest. I’ve also been getting Johan to change the recline on it occasionally to shift my position a bit. I’ve not developed any serious pressure sores yet, so if  I can keep it that way it’ll be good.

I’ll get there. I’m determined to get better, and so long as I’m careful, keep listening to my body, and do what I’m able to I’m sure I’ll improve. I’ve accepted this will now probably take years rather than months, but it will happen 🙂

Danni

Bah Relapse

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

I’m relapsing again. Back to dark room, sunglasses and lowest brightness on tablet to be able to communicate, can’t cope with noise.

Unable to use commode as can’t move enough. I hate the bedpan but have no choice. Exhausting to use.

Got breathless from eating a banana. Chewing was really hard work. Luckily got some pureed meals in and yoghurts and jelly. Will manage.

Doctor wants to see me next week. May need to ask for home visit as painkillers aren’t helping. Everything hurts way more than normal.

Neighbours partly caused this. Cleaner and carer been very concerned, so cleaner contacted the housing for us. Estate officer coming out next week.

Johan doing his best to look after me. Have Penguin and Penelope as well as can’t cope with Johan for too long.

Can still roll over, still use my tablet, still drink and use the bedpan. Positives. I’ll get through this.