"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
I’m not having the best day ever today, pain being almost completely unbearable and feeling guilty over things that I probably shouldn’t, like Johan (or anyone) being I’m the room making me feel loads worse so having to limit how much I see him. It sucks, especially as any touch is horrendously painful. The isolation is probably the hardest thing about ME at this level. Johan is also feeling alone because of it, which is where the guilt comes in.
As I’m not doing great I’ll review the year and last year’s resolutions in another post, when I’m feeling more up to it. I just wanted to note down this year’s before I fall asleep.
1) Comment more on blogs. I read a lot of blogs but very rarely comment. As I like comments, it’s likely the other bloggers I read do too. I’m not putting a number or anything on this as my ability to do so depends on my health, but I’m going to try and comment more. I just hope there aren’t too many Captchas to attempt to deal with 🙂
2) Sort out my emails. I’m not too bad for this, as I use Gmail and my inbox is not too bad, as I go through it every few days. However, I still have emails going to my Danni Matzk email address, and I get a lot of newsletters that are no longer relevant. I want to go through and sort it all out so I get the emails I want to the correct addresses, and stop receiving what I’m no longer interested in. I don’t have to do it all in one go, but it would be nice to have it sorted by the end of 2013.
3) Sort out my Google Reader and Pocket. Similar to the email one this. I’ve realised there are blogs in my Reader I’m no longer wanting to read, so I should get rid of them. This will also mean I’ll be able to add new blogs that interest me when I come across them without being overwhelmed. Pocket is where I send particular blog posts or webpages I want to read later (perhaps when I’m able to concentrate better) but it’s gotten a bit out of control. I hope by the end of 2013 that they’ll both be a bit more streamlined and work better for me.
4) Try and communicate better with my friends. This one is very health dependant, but I have friends who have been amazing at keeping in touch with me and I’d like to reply or maybe even initiate contact more often. Even if it’s just sending an email, text message or Facebook message once a week or so when I am able, it’ll be more than what I’m doing now. Twitter is still easiest for me, but I can spend a little time communicating elsewhere as well.
These are all internet related resolutions. I’ve learnt over the last year that my health can change drastically in a short space of time, and I’m going into 2013 almost as ill as I’ve ever been. Since I spend my spare energy on my tablet, I should be able to do these if I remind myself. Maybe I can set reminders on Google Calendar 🙂
Happy New Year, and I hope 2013 is as good as possible for everyone.
I hope everyone is having the best day they are able today. I’ve been lucky in that I got my speech back while hugging Johan this morning (I’d prayed to get it back today and it worked) and I’ve been able to get dressed and play Monopoly which I won. I’ve been spoilt with cards and presents and we’re getting a takeaway soon. I’m still rather poorly but I’m doing about as well as I hoped 🙂 Proper update blog post coming soon, when I’ve recovered 😉
I am frustrated. I’m fed up of being in this position and not being able to do anything to get out of it. The combination of autism and ME is making dealing with both harder.
I’m frustrated that I’m still stuck in this relapse, and showing no signs of improving. Normally by this point I’m starting to be able to manage being propped up in bed, can have lights on in my room, and can cope better with Johan being in here. I’m not improving. I suppose the good news is I’m also not getting much worse either, though I’m still having periods of paralysis, times where my muscle spasms are so bad I can’t use my tablet, and I’m still in more pain than I’m really able to cope with. I remembered a guildie in WoW had offered to get me some pot for the pain, then remembered that was Glamourpuss and he died last week. He was really an awesome guy and I’m going to miss him (and not just because of that- he was generous in many ways, along with being funny and a nice person to talk to and play with). I do believe cannabis should be available for pain relief, as I know it helped him a lot with his cancer pain. I saw a BBC News article about pharmacies selling prescription drugs and the first thoughts I had were where. Johan is going to speak to my GP today so hopefully something can be sorted.
I’m frustrated by little things. I meant to book a delivery slot for a food shop last week and forgot. I wanted to send my friends Christmas cards and have been too ill. I don’t have enough money to get Sammie everything on her wish list (and I know most parents are in that position and she doesn’t need to get everything, but it doesn’t stop me wanting her to have it all, especially since I know what it’s like not to get what you really want). I’m frustrated that I’m unable to do anything about my hair, which hasn’t been touched since a few days before I relapsed and now feels really uncomfortable. I’m not even sure if it’s possible to detangle now. I want to watch videos for Project for Awesome, including one Sanabitur Anima Mea made, but I’m too ill. I’m frustrated there’s so much world suck and I can’t do much to fix it.
I still have no speech. I’m pretty sure this is more autism than ME, as I’m able to make noises (if it were ME then I wouldn’t be able to make them as I wouldn’t have the energy). Attempts at talking just come out as either nothing or random stuff. The silly thing is I can make some sounds reliably, they’re just not necessarily the ones I want to be able to make. I can make a meowing sound. Squee turns into eee (happy noise). I’ve noticed I’m better at vowels than consonants, which someone on Twitter says is easier for them when ticcing. I know what I want to say, just can’t figure out how to produce the right sounds.
I feel a bit like a toddler as that’s kinda how I sound, and I try to use gestures to communicate along with whatever noises I can produce. I know that this has happened many times before, and normally the ability to speak just comes back by itself, but it’s never been gone this long before. When I was younger it was rare for it to be gone more than a few minutes, so apart from being yelled at when I didn’t respond on demand no-one noticed apart from me, and I didn’t know that it wasn’t usual. Sometimes (normally after a panic attack or complete sensory overload) it would be gone for a few hours, but once I’d recovered enough it would be back.
Since I got ME it changed a bit. Occasionally I’ve woken up without the ability to speak, and it came back either later that day or after sleeping again (in fact, sleeping used to be a pretty reliable way of getting speech back). I’ve had times where it’s been gone a few days, normally during a relapse, but sometimes that’s been because I don’t have the energy to speak (I’d be unable to chew at the same time, for the same reason). I know I’m in a relapse now but I can chew and my swallowing isn’t too bad, so it’s not an energy thing. I just can’t do speak, and it’s very frustrating.
Typing has always been easier than speaking for me, though speaking is normally faster. Reading is easier than listening (both because I have auditory processing issues, most noticeably if there’s background noise, but also because it’s harder for me to remember what’s been said, which doesn’t apply when reading). I do type when I can’t speak, but there are problems with it. First, it’s tiring in itself. This doesn’t matter so much for things like blog posts and Twitter, as I can take breaks whenever I need, for as long as I need. If I’m trying to have a conversation in person, they’re not always going to be able to wait for me to have rests while responding. Secondly, it’s slower, especially now I’m often unable to type using a hardware keyboard. This not only means the other person has to wait, but I’ve got to try and remember what they’ve said and what I’m wanting to say while typing. I frequently forget one or both parts of that, so I have to give up on responding to them.
The problems with using typing when the other person is speaking have been most noticeable when I’ve been trying to do it in appointments or in hospital. They’re also normally the situations where I most need to be able to communicate effectively. I’m working on ways to reduce the problems (making a health passport for common questions, looking into alternative forms of AAC that will work better in that situation) but I get frustrated because not only do I often end up not being able to communicate what I need, I’ve had to put so much effort into understanding what the other person is saying I end up getting payback from the effort, which is the last thing I need during a relapse. Johan helps a bit, but he has a tendency to forget or mix up certain important information (he can never remember my weight, and has said I’m more than a stone heavier than I was on more than one occasion). Also, when he’s reading what I’m typing for me, he sometimes doesn’t read everything I type, which has meant my doctor didn’t understand exactly what I was meaning.
I also feel very vulnerable. I can make some noises, but I’m not able to shout due to ME (that is an energy issue). When Johan is asleep and I need him, it can sometimes take me an hour to wake him up (often after resorting to phoning him, the noise of which makes me more ill). When he’s on his computer, he gets distracted and doesn’t see that I’ve been messaging him desperately for a while. We have a care call system, and I wear the button around my neck (and frequently get strangled by it during the night), but it’s so loud it sends me into overload, they don’t know I’m unable to speak (due to the loudness of the system I’m always non verbal for a bit after it’s been on) and they don’t know anything about me, so it’s unlikely I’ll ever use it. Then there’s the fact I can’t actually puts the button most of the time because I don’t have enough strength in my hands. The one good thing about it is it’s connected to the smoke alarm, so they automatically get alerted if it goes off. It means if there’s a fire and Johan is out, I’m less likely going to end up dead.
I feel most vulnerable when Johan is out. If the phone goes, I can’t answer it and it makes me panic. If the doorbell goes, I can’t answer it as I can’t get out of bed. If the doorbell goes continuously and there’s also someone banging on the window, which has happened more than once, I’m terrified. I have access to my phone and tablet in bed. I know I can text 999 (I’ve registered for it) but I’m not aware of an equivalent for 101 (non emergency police number). Sometimes the messenger service Johan and I use, Google Talk, messes up and he doesn’t get the messages, which is more important when he’s out. Sometimes he just doesn’t realise he’s got messages. I can ring his phone to let him know I need him urgently, but then I have to follow that up with a message to let him know what the issue is. I also am not sure what classifies as an emergency enough to use 999 when it’s not a fire.
If I only had autism (and the anxiety that goes with it) to deal with, I’d still be vulnerable but as I’d be able to get around independently and at least open the door. I had many years learning how to deal with things as an autistic, and though I’d never manage completely independently I could manage life okay, and probably finish my education and look into jobs. I’d be able to throw extra energy into communicating like I used to do, and recover relatively quickly. If I only had ME to deal with, I could learn to pace properly (autism means I struggle with transitions so having lots of short activities interspersed with rests is counterproductive for me), be able to communicate better and possibly wouldn’t be as sensitive to everything. The combination makes everything harder, as it multiplies the issues.
I kinda feel bad not being positive and being all grumpy, but I’ve had a bad few weeks and I’m in pain and everything sucks. I am lucky to have Johan and my friends and an awesome daughter and my tablet and everything, but right now it doesn’t feel enough to cancel out the frustration and grumpiness. Also, I’m in pain. Everything hurts and I don’t like it and I just want it to stop now, please.
I’m still not doing great. Still bedbound, still can’t be propped up, still ridiculously light and noise sensitive, needing sunglasses to use tablet and feeling incredibly ill if the lamp is turned on for more than a few seconds. Speech still hasn’t come back, making this the longest period of being non verbal that I can remember (before ME it usually lasted a few minutes to a few hours at most, and the more than a few minute episodes were extremely rare). Hardest is not being able to cope with Johan in the room with me for very long. I talk to him using Google Talk but even hand holds are limited.
It could be worse though. I can chew so can eat solid foods, and roll over independently. Both are exhausting so I have to be careful, but it means I can eat what I want within reason and adjust my own position when uncomfortable. And I can use my tablet, which means I’m able to communicate and have something to do, though I have to be careful with it as well as it’s so easy to overdo it.
Since I last blogged, I’ve been playing around with my tablet quite a bit. First of all I changed roms, from an Ice Cream Sandwich (4.0) one to a Jelly Bean (4.1) one. I think the last one was either Cyanogen Mod 10 or based on it, while this one is called Eos. The last time I tried upgrading to Jelly Bean I quickly reverted back due to the amount of bugs, but this time I’m very happy. It supports the same theme manager as Cyanogen Mod so I can use the same purple and black theme I had before (trying to find themes for tablets is frustrating) but to my delight this rom also allows me to change the status bar at the bottom from black to purple, something I’ve been wanting to do since I first got my tablet.
I’m liking Jelly Bean a lot. The more detailed notifications are awesome, and I’m still finding little improvements while playing with it. Some of them might be the rom rather than Jelly Bean itself, but still I’m enjoying it. I’m still getting occasional reboots and touchscreen issues, but I think those are more to do with how many times the tablet has been dropped than anything software related. I have insurance for accidental damage but it requires a phone call, changing all my details as I’ve moved and living without my tablet for a bit. I’m waiting until I’m out of this relapse before sending it for repair.
As well as updating my rom (well, Johan did the actual changing, I just did the backups, restoring and setting up) I’ve been playing around with apps on my tablet. First of all I got the My Little Pony game (also available on iOS). I was really enjoying it when I decided to change roms, and was even considering putting some real money into the game for some extras. I backed it up carefully, restored it back on the new rom and discovered it had reset the game, as the saves see based on the device ID. Gone were any thoughts of paying real money into the game, and I was considering just leaving it (it’s a clicking game like Farmville and similar on Facebook) when I discovered on Reddit it was possible to cheat and get lots of gems (the premium, pay for currency). Since gems would let me quickly catch up to where I was, and I had been enjoying the story even though the game wiping was bad and Gameloft massively overcharge for things bought with real money (it’s possible to get gems while playing, but it’s very slow and to get all the Mane 6 ponies would take 2 years, and a lot longer to complete the game’s storyline without paying) I decided to cheat. And it was fun and a great, very low spoon using distraction (not much movement, simple gameplay and very little thinking required).
I also swapped my main browser from ICS Browser+ to Chrome. There are some things that I preferred in ICS Browser+ and it was a bit faster loading most webpages, but Chrome helps by being more compatible with the sites I like to use, including my online banking one (I can actually log in now). Overall it’s a positive change, though if anyone knows how to access the history in Chrome for Android, please let me know. (Edit: found it. You type Chrome:history into the address bar and it’ll show it. I’ve now bookmarked it so I don’t lose it again.) I do like being able to access the websites I was using on my desktop and laptop very easily.
Today I decided to swap keyboards. I’d bought SlideIT for 10p last year, and since then I used it as my main keyboard. It is very pretty but unfortunately it no longer works as well as it did. Recent updates have made it pretty much unusable. My hands are very jerky at the moment and while previously it had been able to guess what I meant to type, recently it has been way out. On top of that, one of the recent updates broke the dictionary so it was no longer recognising common words. It could be fixed temporarily by resetting the dictionary but that meant losing all my custom words. It’s frustrating as I’d really liked it, and the themes are very pretty (there are several purple ones, plus Christmas ones and others I liked, and a theme editor) but as I use my tablet for communication when I can’t speak I need a reliable keyboard.
I’ve swapped back to Swype. It’s still in beta and has to be downloaded from the website, but for my use it’s much more accurate and has much better word prediction. This entire blog post has been written with it, and as I’m not having to correct every other word it’s a lot faster and easier. It’s ugly compared to SlideIT- the prettiest theme is a light one with magenta highlighting and trace pattern, which is still kinda ugly, but it is so much easier to use. I’m still making a few mistakes as I’m used to SlideIT and it has different quirks, but I’m sure I’ll get used to it. I’m still annoyed that SlideIT has gone so downhill though.
On a more minor note, WordPress has released version 3.5 and I’m liking it. They’ve improved the dashboard for use with touchscreens, and it is so much better for it. I’d previously only been able to blog on my tablet in Chrome using the full screen mode as once I’d written more than the normal sized text box could hold it would start playing up, but that’s fixed now. Accessing menus is a lot easier, and I even found a tick box for snow built in 🙂 I’ve not even tried the new media upload section, which has apparently been completely revamped, but I’ll be trying that soon as I’m wanting to upload a photo later in my blog post.
I love technology. I’m so lucky to live in an age where I can stay in contact with the world from bed, while so ill. My tablet keeps me sane, and means I’m able to communicate and do what I can despite being very ill. I can read books (I read an awesome one called Realand the other day- I’m buying it for Sammie as it’s excellent and as it’s a children’s book was good for broken brains), I can talk to Johan and on Twitter, I can look at pictures of penguins and other stuff, I can do my Christmas shopping and help Johan with the finances.
There are times when I can’t use my tablet. Sometimes I’m paralysed or unable to move enough, or I’m too light sensitive to even look at the screen with my sunglasses on. For that reason we’ve started putting together a communication book for me that I can use when that’s the case. If I’m unable to look at it and indicate what I’m wanting to say myself, then Johan or someone else can read it out to me and I can indicate the correct response however I’m able. That might be through squeezing a hand, gesturing, blinking, or if I’m completely paralysed by breathing heavily. Our system is one for yes, two for no, three for I don’t know/maybe, four for something else. We’ll be including the instructions in it so if I’m I’m hospital or a care home again I’ll still be able to communicate. I got the idea from Mog’s talking book from Behind the Child. It’s a low tech solution but anything that enables communication is good. Johan is also trying to turn it into an Android app so that he has it always on his phone (in case we don’t have the paper version when we need it) but also so I can use it on my tablet when my cognitive abilities are too poor to manage typing, which also happens more frequently than is helpful.
If my speech doesn’t come back soon, or continues to be unreliable, I think we’ll be asking for a referral to a speech and language therapist. Our communication book will be good in the meantime though. I’m hoping they’ll be able to help me discover the best form of AAC for me, rather than me just guessing and cobbling together my own solutions (though I’m definitely grateful I can do that with Johan’s help). We also saw the dietician and she’s prescribing me some supplements as my food intake is so poor and my ability to manage solid food is unreliable. She’s also wanting to have the carers help with food preparation as some of the reason I’ve been eating so poorly the last year is Johan not always being able to feed me when I’m able to eat, due to his own disability and because of my sleep reversal. We’d been thinking about that anyway, so we’ll need to figure out how to ask social services for it. We need support to access support, which is kinda an issue.
Giles, looking like he’s plotting
Unfortunately things haven’t been going brilliant for me. Last week my gorgeous cat Giles was put to sleep. Vicky and I had adopted him when we were living together, and though he’d stayed with Vicky rather than me (I was uncertain whether I’d be able to look after him properly and Johan has a very severe cat allergy and values breathing) I still loved him very much. He was an older cat when we got him, FIV positive so needed to be an indoor cat, but he was the right choice for us. He was a rather laid back cat, but he adored food, often finding ways to get extra feedings, including from our next door neighbours at times. He also wanted our human food, especially pizza. I won’t forget him waking me up at 5am demanding food by jumping on my bed and meowing.
In the last few years he’d had some health issues. Problems with his eyes meant he went blind, but he still enjoyed his food and showed he wanted to be around. Last week though he started having more issues, was in pain and no longer had the same interest in food. The kindest thing was to let him go, but it was hard for Vicky, her parents and for me. I’ve been pretty upset since, though trying not to make me any more ill.
A few days ago I also got news that Glamourpuss (RL name Trevor), one of my guild friends in World of Warcraft, had lost his fight with cancer. Although we weren’t best friends, I’d spent many a time playing and chatting with him, and it’s hard to believe he won’t be logging in again. He was an awesome member of the guild, and I know I’m not going to be the only one who misses him.
I’ve also not been coping very well with this relapse. The pain has been unbearable for weeks and it’s only because I know hospital will make me worse overall that I’ve not gone in for painkillers. I even spent some time thinking of if I could get something from the local drug dealer as I was feeling that desperate. I’m not going down the illegal drug route (I’m bedbound, unable to speak, and the only person I know who does drugs is the guy upstairs and I’ve only heard him talking about cocaine, which isn’t going to help. Also I don’t want to be funding crime and would rather get my drugs from a source that’s reliable, but I sympathise a lot with those who go down that route) but it’s scary that I was considering it. Johan and I have come up with a plan. My GP is next in on Tuesday, and he’ll speak with her then to see if she can help. If I need it sorting earlier, we’ll contact another GP at the surgery or out of hours and get help that way. A+E isn’t an option as I’m too ill to get there and cope with the lights, sounds and things. Knowing it’s going to be sorted is making it easier to cope with, though it’s still hard.
We’ve bought a small Christmas tree for my room. It’s purple tinsel, and we’re going to put it on a box in the corner so I can see it. It’ll take a few days but it’s something to look forward to. Johan also got some decorations for my room. I’ve been having some of the chocolates from my advent calendar, though not every day due to feeling too ill and forgetting. It has penguins on it and my name. Johan also got mince pies and other goodies from French Oven, one of our favourite shops in Grainger market. People have also been far too nice to me and have been sending me cards, presents and linking me to pictures of penguins, which has cheered me up a lot while I’ve been feeling so poorly. I’m very lucky to have Johan and my friends.
I still have Christmas shopping to do. I’ve got to get presents for Sammie for Christmas and her birthday, and get some goodies in so we have a nice Christmas. Johan was feeling overwhelmed by the thought of having to cook Christmas dinner so I’ve told him we’re having a takeaway that day. It can be our tradition 🙂 I’ve bought a present for my Spoonie Secret Santa recipient but need to get it wrapped and posted next week (I think I’ll need Johan to help there). I was wanting to get and send presents and cards to my friends and those who have been so nice to me, but I’m too ill to do so. As we’re waiting to hear about my DLA (runs out next month, got confirmation they’ve received the form but nothing else) we can’t go too mad but I have planned to make sure we can eat and pay bills for a bit if needed. I’m not allowed to worry about it until after Christmas unless they ask me to have a medical beforehand.
This blog post ended up a lot longer than I was expecting, and took a couple of days to write. I’m not used to stopping in the middle of blog posts to sleep and rest 😛 It’s been a tough week and I’m still very poorly, but I”ve got my friends, my family, penguins and God to keep me going. It helps.
When I was depressed I felt worthless. All the insults and mockery I’d got as a kid from bullies (both children and adults) I believed. When I was at my most mentally ill, I genuinely believed that I was the most evil person in the world, and that everything that was wrong with the world was my fault. No-one was able to convince me otherwise at the time, though my friends and Johan did try.
It has taken me a long time to regain belief in myself. It’s still a bit shaky- when I’m having a bad day the old thoughts and beliefs come back into my head, and it’s hard to remember that they’re not necessarily true, even if they were said by people I respected or loved. With help though, it is getting easier, even on the bad days.
I want to understand everything. As a kid I used to read encyclopaedias, trying to learn everything about everything. As I’m autistic, I have to learn about social interactions and customs through mimicry or study as none of it comes naturally to me. Because I put so much effort into trying to understand, I value what I’ve learnt much more than I think I would have if it had been easy.
I was told I was intelligent, but lazy. I didn’t believe the intelligent bit as I felt stupid, as that’s how I was made to feel every time I misunderstood something or said or did the wrong thing. I didn’t think I was lazy as I was trying so hard to do what I needed to do, but I must have been because I struggled to get homework in, my legs got really tired and ached if I walked long distances, and I couldn’t write fast enough. Along with other insults, put downs and constantly changing expectations that go along with living in an abusive household it wasn’t that difficult to see why I developed depression, which I was more likely to get anyway because of my (at the time undiagnosed) autism that were causing my other issues.
Now, I know I am worthy. I am worthy of love, of protection, of support. My worth has nothing to do with what I can or can’t do, it’s because I am a person and every individual is worthy. The current government may say I’m a useless scrounger who should probably be dead because I can’t work, but I know that it’s not true, and I have Johan and my friends who believe in me. I’m lucky to have this ability to learn easily that some people call intelligence, and I want to use it in ways that can help others if I can. But that still has no say in my worth. I’m worthy just because I am me, and there is no other Danni who is like me, or will be again.
We should help those who need help, because they are humans and that is what they deserve. Someone who can’t work due to disability or illness is not worth less than someone who puts in 50 hour weeks, as a person’s worth isn’t based on what they do, it’s because of who they are. Even the severely disabled, that may struggle to communicate in ways that those around them can understand, are worth loving and being supported, as they are humans and they bring themselves to the world.
I’m very lucky to have Johan and friends who love me, who like me for who I am. I might be odd, do some things that people consider strange, might be severely disabled and need help in every area of life, but there are people who love and care for me and want me to have as good a life as possible. I want the same for everyone else, and I love Johan and my friends back just as much. I may be terrible at initiating and keeping in contact with people, but I try and I think my friends understand. If there’s a way I can help my friends, I want to do it as they deserve help just as I do.
I want to live in a society where people get help based on need, not money. Where supporting those who need help is done happily as that’s what a good society does, and that help is provided in such a way to ensure that every person can contribute as they are able. And that may not be financial contribution through having a job- it might be through the arts, through friendship, even making someone laugh by getting up to mischief. Unfortunately at the moment the UK is going in the opposite direction, as money is more important than supporting those who need it. I know I am worth supporting, but it seems not everyone agrees.
