"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
A quick update post, as a longer rambly post is beyond me.
I’m not as bad as I was. Still nowhere near good, or the level I was in November before the relapse started, but three pillows happens sometimes.
Johan went to London and met John and Hank Green, and saw Maureen Johnson. John said “hi” to me via Johan. I got the signed copy of The Fault in Our Stars that has John Green’s signature in purple sharpie and a green Hanklerfish.
Johan then went to Leeds to see his parents and met up with a friend. They had good noms.
Vicky stayed with me. It was good. I managed not to spend too long chatting to her, helped by having no speech when she arrived.
Vicky is good at the personal care thing, but there are areas that the dyspraxia really shows. Like wiping my bum. And spilling as much porridge on me as ended up in my mouth while she was feeding me.
Saturday (when Johan went to London and Vicky arrived) I was very ill. I nearly ended up going to A+E with urinary retention but my bladder decided to stop spasming in time. Was very painful, and I was worried it would cancel Johan’s trip.
Just after the last post, Matilda died. We bought a new, shinier motherboard and CPU, gave Johan the motherboard (I got his- the new one was the one up from the one he had) and I installed Windows and Kubuntu. It is much much faster than my old one. My computer is still called Matilda.
I’ve been very up and down. I go from complete paralysis to being able to go on Matilda, sometimes in the same day. Yay fluctuating illness!
I am one day away from Exalted with Golden Lotus and the Klaxxi in World of Warcraft. I’ve not been well enough to go in and finish it.
Many of my friends are leaving my guild in World of Warcraft as they want to raid more than my guild can offer 🙁
I’ve lost more weight. We need to tell the dietitian. She hasn’t sent the supplement prescription details to my GP for my GP to prescribe yet.
I’ve seen the GP. We have agreed I can take double tramadol when I need it so long as I don’t exceed the daily limit of 8 tablets. That is fine by me.
I went to the hospital for a scan. It was the first time I’d got out of bed (excluding the half getting out of bed to weigh myself followed by collapse that I’ve done a couple of times as I needed to check) since November.
The ultrasound was clear. That’s both good (there’s nothing seriously wrong with me in that area) and bad (we don’t know exactly what is causing my pain).
I managed the trip with lots of drugs (also how I managed the weighing myself) and because I was having a really good day anyway (for recently). We went to the hospital restaurant after the scan where I had a cup of tea and a pizza panini. The cup of tea was amazing, especially since everyone else had been drinking tea and I wanted it desperately.
The upstairs neighbours are still being very noisy and inconsiderate. I’ve not had a reply to my email yet so I need to redo it and send it to the housing office proper. I don’t have the spoons to do it.
Our opposite neighbour had his door smashed in. I was very brave and told the police (through Johan) what I heard. Considering the cyclizine had kicked in and I was half asleep when it happened and even more so when they arrived, I think that was why I managed it as I was too tired to panic.
There is a CCTV camera in the upstairs part of the block (in the communal area). We did not know this until the police asked Johan who owned it.
Buses are still more comfortable than ambulances when you have a wheelchair with decent suspension that tilts and reclines.
Johan has started taking Seroxat. He is getting some unpleasant side effects but hopefully they will ease off soon. We’re hoping they’ll help with the depression and anxiety.
Vicky brought up the idea that Johan may have ADD after watching how distracted by everything he gets when trying to do something (like packing for his trip). It makes sense. If nothing else, I’m going to look into the self help management techniques to see if they can help him now I’m not well enough to organise him.
I’ve been able to re-read some children’s books. But replying to Facebook messages is too hard. My brain fog is weird.
I got sucked into TV Tropes again for a week. I’ve only just got out, but it did lead me to read some fan fiction (with commentary) and start re-reading the St Clare’s books by Enid Blyton again.
I have forgotten loads of stuff from the St Clare’s books. Seems I remember Malory Towers better.
There is a load of bullying in the St Clare’s books. I missed that when I was a kid.
One of my favouritest people in the world has got engaged 😀
I have amazing, awesome friends.
Johan is brilliant, and I can’t imagine being without him.
Penguins should rule the world. They’d do a lot better than silly humans.
Purple is the best colour.
Even my short updates end up really long. Guess I have a lot to say even in bullet point form.
I hope I’m getting better, but won’t know for sure for a few days.
I want to blog more but writing stuff is harder than reading it. So maybe I keep reading children’s books and if I’m stuck, I write with bullet points as it seems my blog posts end up just as long anyway 🙂
Thanks to my ME and the brain fog and cognitive issues that come with it, I have a few issues with language that I never used to have. I forget words, muddle them up, say the wrong thing. I get a dyslexia like problem where words get jumbled up on the page and so I misread them, so my understanding of them isn’t great. It happens both with written and verbal communication, reading and writing, speaking and listening. Sometimes this is funny, sometimes it’s embarrassing, most of the time it’s frustrating.
Autism also brings its own language stuff to the table. I still take things literally when initially hearing them, though I can now “translate” most common figurative phrases into their actual meaning. I struggle to adapt what people have said to make it fit my personal situation (that caused more of a problem at college than it does now). Sarcasm is often a struggle- I sometimes understand it, and can even use it, but other times I take what is said seriously. As is often the case with autism, my ability to process language is variable day to day (or hour to hour). ME just makes things all the harder.
I love language. I like to play with it, changing words into forms that sound nice and feel nice to say, repeating words I like over and over (bananas!). Johan and I can judge each other’s moods based on how we’re using language. When I was younger I was called a walking dictionary due to my like of using new words I’d discovered that most people didn’t seem to understand and knowing the meanings of loads of unusual words, but now I stick with a vocabulary that is mostly understood by those who I want to communicate with.
How language is used interests me. As my main source of information at the moment is Twitter, I see most things in bite sized chunks (very good for a foggy brain). Some of what I see I agree with, some of it I don’t. I wanted to write a bit about it now. (I’m sorry if this isn’t very clear or coherent, I’m still waiting for a good day to happen and wanted to write it now.)
The main use of language is communication. For me, the meaning and intent of the communication is the most important thing, as although language can be beautiful in itself, it’s the communication that makes itself useful. I mostly don’t worry about the actual words used so long as the meaning gets across. There are exceptions to this. I don’t like the use of language that is used offensively to imply a group of people are inferior to others in some way (racists insults, the r-word, things like that). I do like people to determine their own language to describe themselves, even claiming back words that were previously used offensively (crip and mentalist are two that are used quite a bit by those I follow on Twitter). What I dislike most though is the use of language to exclude people.
There are a few areas where language is being discussed in the communities I’m part of. In the autism community, there’s the removal of the diagnosis of Asperger’s Syndrome from the DSM 5. I consider all those diagnosed with Asperger’s to be autistic (as it’s classified as an autism spectrum condition, and where the line is drawn between Asperger’s and autism seems to depend more on who diagnoses you than your actual pattern of skills and difficulties). There are some who disagree with this. I don’t like the term Aspie for myself, but don’t get upset when others use it. My personal preference is to be described as autistic- I believe that fits me best, as a distinction made based on my language abilities as a toddler doesn’t exactly have much bearing on my abilities as an adult. I get slightly irritated when someone describes me as having Asperger’s Syndrome (as that’s not how I describe myself) and quite a bit more irritated when someone describes Johan as having Asperger’s (as that’s not even his diagnosis) but I’m mostly irritated at those who think that having Asperger’s is better than having autism (or better than being neurotypical, or neurodivergent in other ways), as I believe that’s wrong (everyone is equal to me).
In the ME community, it’s the name itself that’s the main issue. There isn’t a universally agreed name for the illness, which sucks. My diagnosis was originally given as myalgic encephalomyelitis, but has also been described as chronic fatigue syndrome. In quite a lot of places the two terms are put together. Some doctors use myalgic encephalopathy. It has loads of other names too. Some people dislike it being called ME as it’s not obviously accurate. Quite a lot of people dislike the term chronic fatigue syndrome because it trivialises a serious debilitating illness and makes it sound not that bad. My view is I prefer ME as it is taken more seriously by doctors and is closer to describing the condition, but I really don’t have the energy to get into massive arguments about the name as I’m too busy trying to live with and try and get better from it. I meet pretty much every set of criteria for ME or CFS I’ve seen, and I know some of the issue is that some people are diagnosed with CFS who don’t have the same illness as those with ME (some of whom may have other, possibly more treatable conditions) and that’s been used to promote treatments that are harmful.
Although the name is important (as it does affect attitudes), some people seem to believe it’s the most important issue, and if you don’t agree with them you’re not good enough. I’ve seen comments along the lines of all those diagnosed with CFS aren’t as ill as those with ME (which one you get diagnosed with is more to do with who does the diagnosing) and that if you combine the two (as I do sometimes to be inclusive to those with either diagnosis) it’s the worst thing ever. It’s draining. I’m far more interested in effective treatments and a cure, as having a name that everyone agrees with, though good, wouldn’t do much to take away the pain, weakness, muscle spasms, jerkiness and other horrible symptoms I have. Using the name to exclude people from the community and possible sources of support is really sucky.
In the general disability community, there are other language discussions that come up. A big one is about person first language. That’s where you consciously say a person with <autism/deafness/etc.> rather than an <autistic/deaf/etc.> person. The claim is that it puts the person before the disability. I’ve mostly heard this from non-disabled people, but I’m sure there are disabled people (or people with disabilities) who believe this. For me, I believe this is very individual. I consider being autistic (and being disabled) part of my identity. I’ve always been autistic, and as it is a difference in my neurology it affects how I perceive the world. For this reason I normally call myself autistic, the same way I’d say I’m tall. I’m not strict with it though, and will sometimes say I have autism if it fits better with what I’m saying (just like I can say I’m blue-eyed or I have blue eyes, and both are accurate). I’ve been yelled at (by someone without a disability) for calling myself autistic before, and feel that was very much wrong as it’s my identity and they were trying to force their beliefs on me in an area which directly affects me.
I feel different regarding the ME. As it’s an illness that causes disability, rather than just a disability like autism is, I don’t see it as part of my identity. So I pretty much always say I have ME. Others will probably disagree and may see their illness as part of their identity, and that is their right and I will respect that, and will try to remember what language they prefer (and hopefully they’ll take my disability into account and be forgiving if I mess up sometimes). I know people who feel strongly both ways on person first language and other issues, but so long as everyone is respectful and agrees that what is right for an individual is determined by that individual, then all is good.
The biggest reason for wanting to write this blog post (though I’d been wanting to talk about all the above for a while) is because of some recent conversations I’ve been seeing on Twitter. Most of these are in more general equality communities (feminists and such) rather than specifically disability related, but disability politics and language is obviously involved in it. It’s regarding using language as a tool to exclude people from a community, and ultimately from equality.
The first way I’ve seen it happen is by using language that is offensive towards a group of people, while claiming to be for equality for all. I’m not going to go into any specific examples but feminists who use language that insults transpeople is an example. Now I believe that intention is a big part of communication, and this may occur accidentally. If it was unintentional, I believe the best thing to do (when it’s pointed out to you) is apologise, and try not to repeat the same mistake. Those you insulted may be angry, but I believe most people have good intentions and if you can do your best to learn from it, then it should calm down. Of course, this may also be done intentionally, because unfortunately some people don’t believe everyone is equal and some people believe that if you’re attacked the best thing to do is to attack others, in which case you’ll have a very angry group of people and hopefully the law can step in if it goes too far. I also believe you should challenge the opinion, not the person. Responding to hate with hate just makes more hate.
Now I’ll admit here that I don’t fully understand the concept of privilege as used by those in the feminist/equality community. I know that as a white, literate, disabled female in the UK I have privilege due to my skin colour, literacy, and living in a “developed” country with a welfare system, but men and those without disabilities have privilege above me cos I’m a disabled woman. I’m guessing it’s more complicated than that but I’ve yet to find an easy to understand explanation (I especially don’t understand how my privilege works regarding my sexuality, as I’m bisexual but most people assume I’m heterosexual).
That brings me on to the second way I’ve seen language used to exclude people. I’ve seen some people in the feminist/equality community use lots of jargon and terminology, and if you don’t understand it then you aren’t a proper feminist and you can’t be a good ally or whatever. That attitude excludes a lot of people. For me, it scares me from even getting involved in any conversations as I’m so terrified I might make a mistake and someone will get angry at me (and I’m not the only one who feels that way). It excludes those who for whatever reason don’t have the level of education needed to understand those terms. It excludes those with learning disabilities. There will be others as well. This is especially upsetting for me when it happens regarding disability issues as so many in the community have difficulty in using standard language to communicate to begin with. The insistence that everyone uses the same jargon (with the assumption that everyone has the ability to understand and use it) is very scary for someone with mild language and cognitive difficulties and anxiety. There are also those who play the “I have it worse than you” card, often without knowing the full situation of the other party, and believe they can never understand if they’ve not experienced the exact same difficulties. I believe that everyone is equal and want to help make the world safe and happy for everyone, no matter what differences or similarities they have, but I’m scared to do much as I’m afraid of being attacked by those who say they have the same aims as me.
I wish I knew a solution to this. There are things that could improve matters. Making information about feminism and other equality subjects more accessible for those with learning disabilities by using plain language and easy to read formats would help a little bit. Understanding and tolerance go a long way. Learning the best way to deal with bullies, fun suckers and trolls (who exist in every community, unfortunately) would help for some situations but I’m guessing that often depends on the situation.
On a personal level, I’m just going to do my best to treat everyone like a human being who deserves equality. I’ll make mistakes, but I hope to learn from them. Some of those lessons may be embarrassing and/or painful, but I hope in the long run they’ll make me a better person. No matter what, I have as much right to be here as any other person on this planet.
An update post! Christmas ended up being about as good as it could have been, considering I was still deep in relapse. I got my voice back, I opened lots of presents, we played Monopoly (Johan was the banker and moved the pieces, and I used a dice app on my tablet so I just had to tap the screen to roll). I won 🙂 Instead of Johan cooking a full Christmas dinner that I probably wouldn’t have eaten much of anyway, we got a takeaway (I still didn’t manage much, but feel less guilty when it’s a £3 kid’s meal). I even managed to get dressed in clothes I’d bought for the occasion, a penguin jumper and velvet skirt. It was nice, though not what I would have wanted if I’d been better.
This was the first Christmas where I didn’t listen to a single Christmas carol or song. This wasn’t through choice, as I adore Christmas music. Unfortunately, listening to music is just too much for my body right now and makes me feel horrendously ill. I also didn’t watch any telev.ision, not even the Doctor Who Christmas special. This is the reality of severe ME, and I’m not even right at the bottom of the scale- I’m close, but it can get worse. I enjoyed my Christmas, though I got horrendous payback afterwards.
New Year’s Day I improved slightly. Funnily enough I had a horrible day on New Year’s Eve, with more pain than I could deal with, and being very upset and grumpy as everything was just too much. Normally I’m quite happy and positive even when I’m really ill so that was not the norm for me. I couldn’t sleep but I noticed in the morning of New Year’s Day that I wasn’t feeling quite so bad. My light sensitivity had decreased a bit so I no longer needed sunglasses in a darkened room, and could get away with my normal glasses again. Moving was a little easier and I could now manage two pillows. Chewing has been a bit on and off since then but I’ll take any improvement I can at this stage.
We made the decision during the middle of December that as I was struggling so much with the bedpan, and my bladder is evil (bladder spasms mean that I can feel like I need to go urgently for hours, but can’t get anything out or it’ll come out when I’m not expecting it) we’d try using incontinence pads for a bit. It would also mean that Johan wouldn’t have to get up quite so often in the night to help me with the bedpan now I could roll over myself. We’d originally tried them in the December 2011 relapse but it failed as I just couldn’t go in the things, but this time it was a lot easier, possibly as I was already slightly incontinent. Both of us are able to sleep better now, and though it’s extra expense it’s easily justifiable as it makes both our lives easier, and means I’m no longer in as much pain from being on the bedpan for hours at a time. I do still use the bedpan during the day when my bladder is behaving, as I want to reduce the likelihood of sores and things, but having the option there is great until I’m able to use the commode again (when I hopefully won’t need them at all).
I got my DLA decision through just before Christmas as well. I’m staying on higher/higher for another two years. This was probably the best result we could have had, and a massive relief to us after spending 3 months on the form. I’m in the middle of writing another post about it so will leave that there.
I got many Christmas presents, and among my favourites were penguin thermal socks (two different people got me some) and a new baby Emperor penguin. This penguin has become one of my bed penguins (along with Penguin, Penelope and Purple Penguin when she’s not exploring) and is called Poseidon. He is super excited about everything and wants to learn. He convinced me to help him set up a Twitter and email account and wants to blog, but I’ve told him he needs to wait until he’s used to tweeting first. Penny and Penguin (his mummy and daddy) are happy with him doing this, and are trying to teach him everything as well as providing him with lots of fish.
Another of my Christmas presents was a pair of pyjama bottoms in a size 10. I knew I’d lost a lot of weight, but was still buying a size 12 because I wasn’t sure what size I was exactly. The pyjama bottoms turned out to fit perfectly, and it meant I was much more comfortable in bed wearing them (as they didn’t ride up the way that my far too large ones did). Last week I decided to buy some new pyjamas that actually fit, so raided the last of the Christmas money from my savings account and bought a few pairs from Matalan. I’ve only tried one pair (that I’m wearing now) but they’re loads comfier than the ones that are bigger. One of the sets I think will be good enough to wear as day clothes- they’re a long top and leggings, and look good enough for everyday wear. I’ll probably wear them as both 🙂
Because of the relapse my hair hadn’t been brushed for over 2 months when I finally became well enough to actually look at it, and it was a complete matted mess on the back of my head (probably from the jerking attacks I get). It had been in a plait but that wasn’t enough to stop it getting tangled. I did try to detangle it but it took me half an hour and a lot of payback just to get the tiniest strand out. When this happened in 2011 I swore I’d cut it all off. Johan wasn’t happy with the idea but as he wasn’t willing to detangle it (or help me prevent it from happening again) I had to accept it was time to cut it, especially as I couldn’t lie on my back as it was too painful. I ordered some hairdressing scissors and an awesome wig (Twilight Sparkle hair) and was hoping my carer would cut it for me, but after the scissors arrived I was asleep or not well enough when she was here, and then she’s been off sick for a bit.
In the end I decided enough was enough and hacked the lot off. I half filled a carrier bag with three big lumps of hair. I was so relieved when it was gone that I very happy. I asked my sister Becca to come and tidy it up for me and she did on Monday, and she also gave it a wash (which was much easier than it used to be and made me feel loads better). It is very short- about a centimetre in length, and really needs shaving to get it all even, but it’s loads better than it was and I really like it. I’m happy that I’ll be able to wear a wig when I want long hair (and I can have it purple again, after not being able to dye it for a few years) but it’s just so much better now, and my head feels a little lighter (though I still can’t hold my head up properly :P). Johan is finding it difficult but hopefully he’ll get used to it soon.
Now I’m just doing what I can. Resting a lot, working on being able to sit up enough to use the commode (not there yet but I hope it won’t be too much longer). I still have my Christmas tree up as I missed quite a few days where I was too ill to look at it, and it’s pretty. I’m well enough now for occasional cuddles with Johan, but we have to be careful to not overdo it. I’m still far too sound and movement sensitive for television or World of Warcraft- I tried the latter on my laptop and felt terrible even though I was just planting things on my farm. I might be getting payback from Becca being over on Monday but won’t know until I’ve slept, sometime that I’ve mostly been doing a lot of (at least 12 hours at a time, sometimes 14 or even more). I’m grateful for what I can do but hate being completely bedbound, and we’re wondering how long it’ll take for me to recover from this relapse. Each time I’ve relapsed I’ve never got back to where I was beforehand, but we’re hoping I still have some improvement to go. I saw the dietician (not sure if I’ve mentioned that before yet) and she’s prescribing me some supplements as my food intake is very poor, but we need to speak to the GP to actually get them, and Johan isn’t doing brilliantly at the moment. I’ll get there, I just hope it’s sooner rather than later 🙂
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.
