Everything in that general direction must DIE!

We went shopping today. I’ve been thinking about getting an xbox, but am more than a little worried how the controller will get along with my joint issues. The solution seems pretty obvious, get an xbox controller for the PC and see how it goes.

The last time we went shopping, we hit three game stores and noone had a PC controller in stock. I had a couple of questions regarding the xbox and a game or two and the glazed over look of the guys behind the counter was less than inspiring. The fourth store was much much better. Helpful and knowledgeable staff, clientele that actually looked and sounded like gamers rather than parents trying to shop for Christmas and this was the first to actually stock a copy of Brutal Legend, which says it all in my book. Today, we skipped the first three and went straight to the fourth.

It was rather crowded walking in and a few pre-christmas offers were already advertised. I didn’t make it very far into the store before I noticed that Call of Duty: Modern Warfare 2 was back in stock at half the retail price. It’s one of those stores that have all the popular games but also the more obscure and older games. I eventually caught up with Chris at the counter which was right at the back of the store. As I excuse myself past a few guys in a busy, tiny store, I realised that I was being noticed. The way I’m noticed when I’m in a wheelchair, but not quite. I had my walking stick and that draws the occassional stare too, but then I heard of the younger male clientelle say ‘wow, there’s a girl in the store’.

I smiled at him and started talking to the sales person. He had questions. Did I want a wired or wireless controller? Is it for an xbox or my PC? Would I like anything else? He left to get my controller and I started chatting with Chris about gaming and I was being stared at again. The friend of the original customer says ’she’s not here with her boyfriend’ he’s here with her’ and snickered. I smiled and left the store. Outside it was cold and wet and the stick slipped in my hand, I dropped it and clumsily tried to remain upright. A few people stared. I realized then that man oh man, I’d much rather be stared at because I’m girl than because I sometimes walk funny.

It was the black kitten’s fault entirely

I love reading and when I stop reading it’s usually for the same reason; I’ve lost interest in my chosen reading material. It’s been headache central since I hit my head and that eats into my gaming and TV time mightily. Also, remaining upright is still rather problematic and the sixteen hour nights I was indulging in has metamorphosed into not being able to sleep much. Books is the most accessible hobby left and so I find myself looking for inspiration.

I love Honor Harrington, but I’m on book number 9 and in desperate need of a break. The What Should I Read Next? site has been very helpful, but Goodreads has stolen my heart. It’s a site with a clean layout that allows me to create lists and who doesn’t love doing that. I can add in books I’ve read (and rate and review them), books I own, books I’m currently reading and books that are on my reading list. It’s an all-in-one site for everything book related that my heart desires and so far it has all the books I’ve been able to think of that fits on any of those lists. It also has the option to add friends so that you can see their books, follow strangers whose taste you may appreciate, follow authors and compare your books and ratings with someone else’s. It is one of those sites that have the potential to become addictive and a substantial time sink.

I don’t as a rule write reviews or even share my opinion in any form other than “I loved/liked/disliked/hated it”, mostly because I’m both terrible at explaining and even worse at trying to define or quantify my taste. For people like me, there’s the five star rating that suffices and if I ever feel like trying my hand at capturing what it is I loved or hate, this would probably be where I’d go. It even handily links to amazon.co.uk and not just amazon.com. I’ve been moodily frustrated all week and the prospect of new books by authors I’m not familiar with excites me. Also, the opportunity to stroll down memory lane into some of my favourite universes, remembering characters that often feel like dear friends, has been time well spent.

I don’t read enough. Audio books take forever to complete, electronic books hurt my eyes and real books hurt my hands. Then most things do all of the above and that’s no excuse. I am realizing that I miss lazy afternoons curled up with a book and caught up utterly and completely in the plot. It’s time to rediscover those hours of pleasure again and this site provides a great incentive. So many appealing things to read that I can’t wait for it to start gobbling up my time.

Success, frustration, accomplishment

The whole point of gaming when I started was to get away from the frustrations of real life. It was an opportunity to do things I can’t do and escape into a world that I don’t need to take all that seriously. Little did I know that frustration was not one of the things I’d be able to escape. And that’s not necessarily a bad thing. I don’t deal well with frustration and getting stuck in a game is teaching me very quickly to get a better handle on it.

I started playing with loud objection every time I hit a difficult patch that seemed insurmountable. I didn’t like having to complete pvp achievements to complete What a long, strange trip it has been and I particularly dislike getting stuck on obstacles that has nothing to do with game play, like falling off pipes because I don’t have the motor control I’d like to have and standing in stuff because I dislocated a wrist or thumb or a few fingers and now can’t move my character before she died a shameful death.

I’ve spent quite some time on The Turkinator and it’s been particularly frustrating with post-concussion reflexes, but at no point did it feel impossible to accomplish. I have learned not to keep going until I success, that way lies madness and broken cups, computers and fingers. I stop when I get frustrated and take a break to come back fresh for another go later. It’s a good strategy. I do get better with practice and although certain things are pretty random and I can’t predict and plan everything, knowing where the turkeys are did make it easier. And by day three it’s quieter too which makes it easier as well.

I used to think very differently about in game obstacles. These days, I try to work my way around obstacles in whichever way I can think of. Sometimes it means trying different hardware or different key bindings, different strategies and sometimes it’s just about persisting until I develop the skills required to succeed. It’s easier to say that my reflexes are crappy and my muscles are weak and there’s nothing I can do about either of those. And that’s true enough. It’s harder to say that those are not the only two things that affect skill. There are so many factors involved in mastering the individual parts in a game and somehow somewhere there is room for improvement and sometimes, that’s enough to make the difference between success and failure.

Getting stuck is frustrating. Running around for three hours trying to kill turkeys was frustrating. But when I finally did get to 40, the accomplishment wasn’t just an achievement. When I started on Sunday, I was running into trees and having issues killing a turkey despite the fact that I had it macro’d and was only required to hit 3 to target and 4 to kill and by lunch time today, I was killing turkeys whilst singing along to Diamond Head’s Am I Evil, not even thinking much about what I was doing at all and yet doing it pretty well. Yes, time makes a difference, but so does practice and experience. Sometimes the frustrating part in a game is just that, frustrating, but other times, having worked for something makes the reward a little sweeter. And working, that’s not the gigantic waste of time I used to think it was either.

I found Batman looped in circles that took a while to untangle when I logged in to play. Apparently at some point in the 16 hours I don’t remember I had thought it a good idea to be Batman. Go figure. I can’t imagine how frustrating it must have been trying to figure that out whilst disoriented and a little confused, but I’m glad that I tried anyway. It says something about me that I like. It would’ve been better if I’d been more sensible and say, realized I needed medical attention, but still, I went somewhere that felt safe and Batman, well that’s a big improvement over the corner on the carpet in a dark bedroom. Frustration is everywhere, it’s pointless trying to escape it. But overcoming it or finding a way around that which you can’t overcome, that’s a strategy I didn’t know I had until I was singing “I am evil, yes I am”, sipping decaff with a sleeping cat in my lap and the achievement finally flashed up. It took a while, it took quite a few times of starting and stopping and when done, I used to wonder was it worth it or what will the next obstacle be, but today, I just relished the moment. Life doesn’t have to be that particular and sometimes, a sense of success and accomplishment comes in weird and seemingly tiny packages that are plenty valid, memorable and meaningful.

A wanderer with purpose

Say Pilgrim and I think Canterbury Tales rather than Pilgrim fathers or  Thanksgiving. I usually keep up with the in-game events, but Day of the Dead swished by taking up a full haphazard five minutes of my time pre-raid and waking up around 11 a.m. with Chris instantly there filled with excitement that I’m finally awake and we can go shoot turkeys and rogues heralded it’s arrival.

I have a love-hate relationship with special events like this one. I love when they start on a Sunday morning when Chris has the day off and we can run around in game whilst drinking our morning coffee, pointing at each other’s screens and spending some quality time together. It’s one of my favourite things to do as a couple. The hate part comes a little later. There’s usually something impossible or extraordinarily difficult that takes the fun out of it in a blink. I hit a wall, get frustrated, which bleeds over Chris’ good mood and frustrated that he can’t help, fun becomes no fun for either of us.

We started well prepared this morning. No rush, we agreed. I won’t grow impatient because he looses me in crowds (it makes me wonder if  prosopagnosia translates into the game in some way or another) and he won’t get frustrated because I’m running into things again and struggle to target anything. It will take time for both of us and there’s no rush. I started to tense up when logging in required three tries. Hitting the wrong keys is a bad start and I know it. “Deep breaths”, Chris says and I breathe and relax my shoulders. We’ve been doing a lot of deep breathing since I hit my head, I seem to be a nervous wreck.

The morning went pretty well. I waited patiently when he couldn’t find me rather than doing my usual ‘Where are you?’ and ‘How can you not find me, I’m an orange dot on your minimap’ and ’sigh’ and twiddle my thumbs. He was patient when I ran into walls, hit the wrong buttons and fell behind because everything is taking longer. No rush, he kept saying. Don’t worry about it, it’s temporary, we’ll get it sorted again. We took breaks when my hands were tired and when they got really tired and hurt, we tried massage and heat and logging out for a while.

I’m still not done but neither is he. We’ll do the Horde cities after I’ve napped in the afternoon. I’ll do the turkeys in the early morning hours when there’s less turkey hunters and tomorrow’s dailies will provide enough Turkey Shooters so that I can just park myself in Dalaran and wait for unsuspecting rogues of every race to wander by. I love that there isn’t a timer on the Turkey achievement, usually it’s kill x number of y in z minutes. This time, there’s enough of a time gap that I can do it despite crappy reflexes. I’m pretty  sure I can manage even with post-concussion reflexes. Woohoo.

There’s something magical about getting up late on a Sunday morning and running through festival achievements only stopping for Bacon rolls and coffee. And it’s even better when none of the ahievements suck the life and fun out of it.

Why is a raven like a writing-desk?

‘Who are you?’ said the Caterpillar.
This was not an encouraging opening for a conversation. Alice replied, rather shyly, ‘I — I hardly know, sir, just at present — at least I know who I was when I got up this morning, but I think I must have been changed several times since then.’
‘What do you mean by that?’ said the Caterpillar sternly. ‘Explain yourself!’
‘I can’t explain myself, I’m afraid, sir’ said Alice, ‘because I’m not myself, you see.’
‘I don’t see,’ said the Caterpillar.
‘I’m afraid I can’t put it more clearly,’ Alice replied very politely, ‘for I can’t understand it myself to begin with; and being so many different sizes in a day is very confusing.’

I slipped in the bathroom some time on Thursday night, fell and hit my head harder than usual. I fall over a lot and I’ve hit my head more often than is good for me and usually it’s just not that big a deal. I vaguely recall what happened, I feel a little dizzy, dazed and confused for a while, sleep sixteen hours a day for three days and over a couple of weeks, maybe a little more, my concentration, balance and coordination slowly return to what’s normal for me.

This time was a little different. Not new, but not the run of the mill. I don’t remember hitting my head. The last thing I remember happened around 9:30 p.m. and then there’s this big black hole where the next sixteen or so hours were suppose to be. Usually, I can keep my head enough to realize that my brain just got jumbled and so won’t work all that well. I take action accordingly. Occassionally, the net just isn’t there. If I don’t remember hitting my head, it’s a little difficult to take it into account. It’s something that freaks me out to no end and as the dazed and confused phase now wears off, it scares me even more. I dislike that no amount of willpower in the world can give me control back when my neurochemistry goes haywire after a knock. And no amount of preparation can prevent all falls. My balance is awful, my joints unreliable and every now and again I’m going to miss a step and bad things will happen.

Neck instability doesn’t help and add an atlantoaxial subluxations and symptoms of vertebrobasilar insufficiency to the mix and it gets a little scarier. Chris fixed my neck up when I apparently woke him up a second time around 3 a.m., by this point semi-hysterical and very confused. Twenty minutes later I was calm, seemed quite rational and fell asleep. He figured that he’d fixed the problem and this concussion will go the same route as the usual mild ones. It didn’t quite.

The symptoms were worse this time round and were still very persistent by late Friday afternoon. I was dizzy and clumsy enough to fall over again and my neck was a little wobbly, aggravating symptoms whenever I moved my head without thinking. Being still rather confused, I wasn’t thinking all that much and so moved more than I should. By early evening, things weren’t looking up, Chris had enough of checking on nonsensical me all day and we were both concerned enough to drive over to our local A&E straight away.

It was a better experience than the one I had dreaded. The receptionist was neutral, admissions nurse were concerned, we didn’t spent long in the waiting room even though it was a busy Friday night and once ferried into the back and changed into a hospital gown, the nurse doing the initial assessments were nice, reassuring and brought me not one but two blankets because it looked like I needed them. I got checked out, all seemed okay-for-me, but they were a bit concerned. I slept. Chris sat next to me and stroked my cheek, happy that he was allowed to use his Android phone to browse the internet and sent emails. I stayed for a few hours, got checked over a few times and by the time we reached 24 hours after the concussion, the doctor did a full neuro exam and after a big lesson on what EDS is and why cervical instability is not a problem, orthostatic hypotension isn’t a problem, an irregular resting pulse of 110 is normal, she seemed happy enough that I could go home as long as someone’s there to keep an eye on me for at least 48-72 hours.

It’ll take three weeks or so to get my balance and coordination back. I dislike thinking about what this will do to my gaming hobby or my ability to hold cutlery or a cup of tea. I was just starting to get the hang of things again. On the one hand, I’ll most definitely have quite a bit more free time to spend on books, my hands are shaking and tired and spasming and fine motor control will require work to get back and whilst the neurological issues persist, my muscles will weaken, joints will destabilize and complicate the process that little bit more. Let’s hope I won’t need physio too. It’s going to be three weeks of pretty bad headaches, bouts of vertigo and fatigue is a big concern for me. I tire easily and after I’ve hit my head, I’ll think of my previous self as an energizer bunny. It makes me a little sad, but I’m not concerned. A normal neuro exam is a good thing. I’ve lost a few more brain cells but I’m okay coping with the inevitable and this is one of those inevitable things.  More difficult to cope with is having lost my sense of self a little bit. I feel a little like Alice again.  Ans it’s a lonely place to be, that moment where you pick yourself up, dust yourself off and try to put the pieces back together again.

Dignity

Chris is quite a fan of mindless TV, particularly after coming home to errands and chores after an already long day at work and I’ll watch just about anything if a back massage is attached to it. And so our evening routine usually consists of Chris cooking dinner whilst I play WoW (apparently too many cooks spoil the broth and I’m banned from the kitchen), we more often than not eat upstairs in the bedroom and watch something on TV. After dinner I get a back massage and he gets to watch whatever he wants. An episode of Law and Order was on the menu recently and I was rather surprised when Ehlers-Danlos Syndrome was mentioned.

I’m not particularly interested or bothered when mainstream media selects a rare condition which in this case happens to be mine and gets it all wrong, but in this case, I was a little bothered. EDS consists of a group of heterogenous conditions with plenty of cross-over symptoms between different types, making it a particularly complex diagnosis to get. I find it difficult to watch when EDS is in the media and it’s so different from how I experience it. EDS is extremely variable and boiling it down to: “Blair’s baby was diagnosed with Ehlers Danlos syndrome. The skin is so delicate the slightest touch causes tearing. It can be fatal without constant medical care” is a little disappointing. I assume they picked the dermatosparaxis type of which less than a dozen cases have been reported world wide as it’s the type with the most pronounced skin issues, but in that case, how hard would it have been to just say so? And personally speaking, it all sounds a lot more like Epidermolysis bullosa, but I think nobody could pronounce that one and EDS just sounded better.

The fact that it was an abortion themed episode was less of an issue for me other than I felt it should have been more about the murder and less about the moral issues shrouding it, but that’s just me. Life is complicated enough without thinking about ethical dilemmas that I don’t have any first hand experience of. In between dealing with the chronic issues disability and an incurable illness creates, I try to live as happy and fulfilled a life as I can and it only gets depressing when I over-reach. It’d be nice to have a full-time job, raise a family, own a house and do all the things everybody else is doing, but it always feels like reaching for an unreachable goal and just the thought alone is tiring. I remember what it was like when I tried to keep going even when I really should’ve been stopping. It wasn’t nice or pleasant and the rewards never seemed worth the sacrifice. There are different paths one can take in life and although there are limitations, I still think that there’s always a way to find a path that you’re happy with.

Did Amadeus go mad or was he just dizzy?

Very bad migraine day and thankfully these are few and almost far between this time of the year. The only real cure for me is time and sleep; eventually I’ll wake up without it hurting, but until I do, there doesn’t seem to be much respite. I wake up, it hurts, I move and it hurts more, I get up and I’m pretty sure my head is going to explode. So I get back into bed, lie very very still and try to sleep. Sleeping is easy if I’m lucky, which I mostly am. I drift off and dream. I have the same headache in my dreams. My headache dreams always have the same theme – dredged up unhappy memories from the past, imagined fears and worries; I’m always stressed out, dealing with problem after disaster after potential catastrophy all the while my head is pounding and I just want to sleep. The irony doesn’t go amiss.

The cat gets anxious and protests. It really doesn’t help. The personal assistant arrives at nine and I decide to shower. She always starts the day with ‘are you dizzy?’ and I always say ‘not much’. I’m always dizzy when I get up and she always makes such a fuss about it, you’d think that it was a big deal. She talks non-stop even after I ask politely if she doesn’t mind being quiet just this once as it really hurts my head. This prompts a very long monologue on how she gets headaches and she’s been having that feeling that she might get a headache for days and how people just don’t understand that migraines are serious and the visual aura that she gets for a whole fifteen minutes is so incredibly debilitating and how lucky I am that I don’t get those. I want to scream, but that wouldn’t help. I go to that place in my head where it’s quiet and peaceful and solitary and breathe a sigh of relief when she leaves.

I catch up on an audio book that’s been almost forgotten, mostly because I’ve only been listening to the Honorverse when I have a headache and have begun to associate it with being in pain. Books are soothing, books with treecats double so, but it’s never quite soothing enough. I sleep, I dream, I wake up, I think, I imagine and I hope that at some point, even if its just for a few minutes or hours, it’ll get better. Now it’s night and late that’s almost turning into early again and finally, that moment has arrived. As long as I don’t do much, it doesn’t hurt much. It’s okay, for a little while. I can feel the throbbing at the back of my skull that makes it clear that it’s not over, soon it’ll get worse again until I’m curled back into a little ball wishing it was earlier or later, rewinding or fast forwarding to the moments where it was and will be better. It’s a blessing in disguise that pain isn’t constant and stable. It ebbs and flows and even though at its lowest points its still pretty intense, the fact that when it’s at the intolerable point, one can look forward to when it’ll go down just a notch is relief enough. It doesn’t have to go away completely, it just has to get a little better every now and again.