biggest risk, greatest reward

The scariest, most terrifying thing I have ever done was agreeing to meet a person I met online who lived on the opposite side of the world. And knowing that it would be so difficult, so paralysing because of the nervous fear and hope and anticipation and awkward and surreality, we had agreed to start with the small, simple action of taking each other’s hand. Somehow I overcame that paralysis and a moment later, my clammy, sweaty hand was clasped in his clammy, sweaty hand.

That was 18 years ago. I was 17. Some time in the last year, the part of my life before he took my hand became shorter than the part of my life since that moment. And that feels good.

state of the leg

TheRoadSoFar

Since this is about Stephanie I thought I would add a few references that she might appreciate.. :)

So, in the first week of October last year she slipped in the shower and dislocated her right knee. It popped back in as she stood and we put ice on it and all that and went to the doctor and physio first thing the next morning. She had a rigid brace for a few weeks, was doing exercises and stuff, then she graduated to a soft brace and more advanced exercises and it was all generally going quite well in the recovery process.

But then she had a few subluxations which is a partial dislocation, the knee goes a bit wonky and sideways but doesn’t completely pop out of it’s place. But, still not very pleasant and it does set back the recovery process somewhat because it screws up the muscles and ligaments that the exercises are trying to strengthen. Generally, though, our physio told us, as long as you’re not having a complete dislocation again, chances are good that you will be able to return to full mobility through rehabilitative exercises alone rather than more serious surgical solutions.

EXCEPT.

After one of these subluxations happened, Stephanie started having pain in the entire right leg, starting partly in her foot and going all the way to her leg/pelvic joint. It wasn’t just sore and painful though, it was PAIN and taking standard OTC things wasn’t helping, and even just touching her was excruciating. So back to the doctor we went. After describing everything to him, he said it sounds like RSD/CRPS. Same condition, just has more than one name. I don’t know why exactly. Complex Regional Pain Syndrome. As the name suggests, it’s complicated, painful and affects an area of the body :) Generally it happens after an injury or surgery but not always. Obviously, for Stephanie, the dislocation and subluxations were the precipitating trauma. So the doctor prescribed some pills for Stephanie and she took them and she turned into a zombie for a while but after a couple of weeks, the all-over pain subsided and she was back to “normal”.. she still was doing the rehab exercises and was on the way to recovering.

Over Christmas and the holidays stuff stayed reasonably stable. There were a few minor subluxation incidents but we always got ice on it very quickly so it was never as bad as the first couple of times. She did still have to be careful as too much activity would wear her out and make the knee ache but resting made it better. So that was all fine and she was progressing with the rehab, still wasn’t able to do anything super active but was getting there.

Then school started again, and on about the third day they had a swimming carnival. Apparently high school kids a complete assholes and upon noticing that someone is sitting a particular way with their leg out straight on a bench, rather than assuming they should give them space because obvs they have some kind of injury, instead they just plough through with no regard. When she came home that afternoon, her leg was in agony. And this bout of CRPS has been going since then, with no indication on when it might subside.

There are OK days and bad days. The level of pain is really exacerbated by the level of activity. She has crutches which she uses as a mobility aid, so that she is putting less weight on her leg and increasing the amount of time she can actually do stuff. Still, this term we are barely managing a 50% school attendance so far. Of course, this is not helped by the at least 3 times that I have had to go pick her up because some careless idiot has done something and ended up hitting her leg somehow, making the pain level spike drastically and sometimes leaving it so that Stephanie can barely stand because it hurts so much. And this part of it really, really pisses me off. We are trying, really hard, to manage this shitbrick of a condition alongside her education as much as possible so that.. well, she gets educated. The people around her have been TOLD that they need to be extremely careful near her. It has been explained to them that she is in pain all the time and even just the lightest of touches can turn the dial on that up to full blast. Apparently, most of them don’t believe it, because it doesn’t look like there is anything wrong with her and she doesn’t use her crutches “properly” .. i.e. as a person with a leg or ankle injury uses them, that just proves there’s not really anything wrong with her. So for some of them it’s amusing to try to get in her way or take her crutches.

Fucking seriously.

We tell her to whack them in the nuts with her crutches, but she doesn’t want to get in trouble. I think it is fucking fair play. Some sources describe CRPS as the most painful condition known to exist. So if they think it’s funny to deliberately mess with someone dealing with that, they fucking deserve to get their pathetic little berries crushed.

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Not very peaceable of me, I know. But, well. It’s fucking frustrating. I can’t give her a panadol and make her feel better. Aside from the few deliberately assholey kids, I don’t think most people mean any harm to Stephanie.. they’re just being kids. Oblivious, living in the moment, enjoying themselves. And I don’t want to take that away from them. I just wish it wasn’t taken away from my kid. I wish there was something that could be done to make a decent improvement.

Educational part again: We have had to do some learning about pain and how it works and stuff. Most people understand that pain (generally) has an important function for us because it is a warning and a reminder about how to keep ourselves safe. You touch something uncomfortably hot and you get a burn and your brain takes note and makes sure that you’re especially careful next time you’re around hot things, because you don’t want to damage yourself again. That’s normal, everyday pain, technical name nociceptive pain. Pain where the nerves have been activated by a particular stimulus to make them send the pain message to your brain. CRPS is neuropathic pain, which is basically the nerves not behaving as they are supposed to. Sometimes it is due to actual physical damage to them, sometimes it is .. other things that people haven’t figured out yet. One of the doctors we saw at a hospital a few weeks ago, who was otherwise a bit of a douche, gave what I think is a good analogy: normally, you walk into a dark room. It’s dark, so you reach out and flick the light switch. The lights come on. A specific action has a specific result. With this, you walk into the room and all the lights are already on at full brightness, even though the switch remains in the ‘off’ state. That’s the baseline, good kind of day. On the bad days, when a breeze brushes against her leg wrong or a douchecanozzle bumps into her, it’s not only bright lights, it’s the sun with no mylar filter.

I am not joking about the breeze thing, by the way. That is called allodynia. Where normal shit that shouldn’t hurt actually hurts a really fucking lot. (Hey, I should write my own medical dictionary. My definitions are very catchy.)

It’s starting to get a bit technical when you get this far into it, but as I understand it, medicine we generally think of as pain relieving (paracetamol, codeine, morphine, all that cool stuff) is quite good when you have the nociceptive kind of pain because it has something real that it can act on to make your nerves not need to send that message to your brain. When the nerves are doing that all of their own accord, then not so much. There ARE some medicines that affect the nerves in the right way, but as I mentioned before, they happen to turn Stephanie into a zombie. That is not even an exaggeration. Ok, maybe a slight exaggeration. She’s not eating brains or anything. But she literally has trouble stringing together a coherent sentence. Even at the tiniest possible dose (⅛ of the lowest dose tablet) she was painfully stupid. And I say this with all possible affection. She’s in extension classes and stuff because she’s pretty smart. But trying to help her with her school work when she wasn’t able to attend last term and she looks at me dumbly when the question needs her to work out 10² is kind of … you know, rolling shit uphill or whatever.

The other few medications that are used to treat this kind of thing are pretty heavy duty shite. Beyond what a GP can or is comfortable prescribing, or not necessarily suitable for use in a minor. We are now waiting to get an appointment to see the Pain Team at the Lady Cilantro Hospital. Maybe they will be able to do something more in depth. Or else just teach Stephanie how to deal. I don’t know. I just hope it is not too far away, because even now while I was writing this I got a call from the school to go and pick her up. Because on Thursday mornings they have whole school parade and somebody bumped into her. Again. Is it really too much to ask for people to be a little bit careful?

It’s really pissing me off. She was sorer than usual this morning, but she got up and ready and went to school anyway. And then basically before even any classes started, some dick goes and fucks it up for her. It was an accident. They didn’t mean to. But they did. And it wouldn’t be that hard to not.

Apart from the zombie medication she can’t take, basically the only other things we have to do right now are trying to desensitise the leg in order to get the nerves to reset, which we have done by gentle touching or stroking of the skin, until she can’t tolerate it anymore, and using a TENS machine. The TENS machine didn’t really seem to do much except make it hurt more. Also using water for desensitisation is another thing but it’s awkward. Getting in and out of the bath is not easy and the other people in a public pool tend to make too many waves in the water which makes it painful before it even gets anywhere. Oh, and there is the “making your brain feel happy and relaxed” thing. By doing things you enjoy doing it makes your brain feel good and basically we want that to pass along the nervous system until it gets the fubared nerves and makes them go back to normal.

Anyway I think I have had enough of this topic for now. Because I am just frustrated at my lack of ability to do anything to help.

yays and nays

Having been a while since we last travelled to the old land, there were some things we noticed and others we had forgotten about. Some good, some less so..

  • People seem to be smoking everywhere. I’m not sure if there is actually a greater portion of the population smoking, or it’s just that they do not have many of the laws regarding public smoking that we do. (Ok. Googled. There are slightly more people smoking there, but only a percent or two.) We hate it when we come out of a shop or something here and get hit in the face by the stink of someone smoking just far enough from the entrance. When it’s anywhere outside in public and the shopping areas are open street malls… it sucks!!
  • Also, there are shops everywhere for electronic cigarettes/vapes, and you see people using those walking along the street too. I know that people do have them here but I’ve only ever seen Neil using it and that is at home. Possibly because Queensland prohibits using them if the liquid contains nicotine, and isn’t that kind of the point of smoking? So maybe people just don’t bother. So that was kind of strange to see.
  • I went into a shoe shop and I tried on like 8 pairs of shoes. I’ve never had this happen before in my life. And there were lots in my size that I didn’t try on, as well. Amazing.
  • You can buy alcohol in some strange places. Like the supermarket. And the cinema. Now I think you can get a glass of something if you go fancy and do Gold Class here, but you can’t just get it at the general snack and drinks counter. Strange. (And I thought Aussies were the ones who had the reputation for allthedrinking?)
  • Do they have something against salt? We kept noticing when we had fries from a variety of places that they had practically no salt on them. WTF? As Neil likes to say, if you don’t have salt, your arteries won’t harden and you won’t stand up straight. (And I need that, since I have a problem with that.) Also, it tastes nice.
  • I can’t understand how 90% of the population is not suffering from Seasonal Affective Disorder. It starts getting light a little before 8am and getting dark around half past three. That is only 7 hours of light, which is not even that light anyway! I found the strangeness of light patterns made it particularly difficult to have my body orient itself in time. I would wake up and it’s pitch dark outside so I think it must be like three in the morning or something. But then I will glance at my watch and see that it’s actually 7am and it’s just so disorienting. Strangely, I don’t recall noticing the light thing to this degree either of the other times that I have been there at the same time of year. Perhaps because the first time, I was 18 and had just arrived to be with Daniel after six months apart. We didn’t notice much of anything except each other. And the second time we had a 10 month old baby and I was not well.
  • Bread clips. Why do you not have them, UK? It’s so freaking annoying to open and close the bag of bread with a bit of tape that gets progressively less sticky every time you do it.
  • Cadbury Drinking Chocolate, we likes it. It’s quite different from the Aussie version of exactly the same name. We also likes Galaxy Hot Chocolate. We also discovered that it is quite pleasant to put some of each in a cup and have double hot chocolate. Mmm.
  • So many channels on the TV. SO MANY. Not really that much more to actually watch. Though we did enjoy watching the Doctor Who Christmas Episode live on it’s first showing.
  • Squirrels! So cute. So, so cute. There were some playing in Allan and Lisa’s garden but I suspect not as many as there could be since Allan doesn’t like them and won’t let people feed them :P And the neighbour has a squirrel feeder. Stephanie did try sneakily leaving some nuts out there but they must not have been the right kind because they just stayed untouched for a few days.

  • We drove down to Reading one day, to visit Daniel’s brother and sister and to see some friends. Daniel sent a general invitation out to a bunch of his old friends to meet up with us for lunch and in the end only two were able to make it. One was Melissa (accompanied by her own personal Antipodean/husband Steve who is from NZ) and the other was a guy called Mark that Daniel went to school with. I have never met him before. So he introduced himself and then he said “And this is my husband, Jason.” And I restrained myself from squeeing. Because they are the first really truly legally married same-sex people that I have ever met. And I’ve been waiting a really, really, really long time for that. So that was a small moment that was really special for me.
  • Tampons. It was an unfortunate set of timing that both Stephanie and I needed tampons while we were over there. We did each bring a whole box with us but we ended up needing more. So we went to the shop to get them. There were, and I am not joking here, only TWO to choose from.. the supermarket’s own brand and one other brand. All the rest of them were those spring-loaded missile-firing applicator shite. Are British women delicate about touching their vaginas or something? I was really not feeling the luxury of the feminine hygiene product buying experience.
  • The passport stamping lady when we arrived in Manchester stamped my passport and Stephanie’s passport and Abigail’s passport and Kristian’s passport but she didn’t stamp Daniel’s. Because he has a Danish (EU) passport and there is freedom of movement between countries for EU people so he didn’t need one. And when I asked her if she could just stamp it anyway, she refused. Big stupid meanie head. The Australian passport stamping man, on the other hand, was quite happy to put stamps in ALL of our passports when we came back when I asked if we could have them. He seemed a bit amused that I was so pleased at his willingness to do this. AU 1, UK 0.
  • I saw nieces and nephews and cousins with numbers that I have never seen before and that was really awesome. I liked seeing them all but it was especially cool to see Stephanie, David and Sammy because Sammy is the youngest member of my level of the family tree by far so he is kind of extra special :) And he also has a ridiculously cute baby french accent that could turn anybody’s ovaries to goo. And the other that was a little bit extra special was my birthday niece, Cerys. Who is now 6 years old!
  • There are people we saw while we were there that.. it’s likely we won’t ever get to see again. This was the main sucking thing about the trip. Some are getting old, some are sick, some are both. I knew that they were old and/or sick before we went, of course, but it is a little different to see it in person. To see just how much time and illness have taken their toll on them. So while it was lovely to see them, the very visible reminders of their (well, and everyone’s) mortality was sad.
  • One last thing. On the plane on the way there, four or five hours away from Manchester. Completely tired, very sore. I was sitting next to Abigail. She was awake after having slept through most of the trip so far and she decided to look out the window. She asks me about a green thing she can see. I somewhat sleepily tell her that planes have various coloured lights on the wings and underside and she can probably see one of those flashing. She didn’t seem quite satisfied with that explanation but left it be and continued looking out the window. Then, a few minutes later. “Is it possible… like, can you see the, um Northern Lights from where we are?” And I sat up very fucking fast and leaned across her to look out the window, because I knew that we were in fact flying up over the far north of Russia and yes, you CAN see the Northern Lights from there!! It wasn’t a particularly intense display and we were approaching the end of darkness by that stage but we still saw them! Bucket list item achieved!

parent sex/married sex

First of all, I do understand that this lady’s post was somewhat tongue in cheek and exaggerated for the comedy value, but these kind of posts kind of disturb me. And I have nothing against her personally, it’s just her post has gone viral and is being talked about a lot right now.

But.. is it literally “just me” or is this what most people’s lives become like after they’ve had kids? Or been married for more than 5 minutes? Why is it almost always implied that it’s inevitable that you either lose interest in each other or have no time for each other after you add young people to your family? A recent group conversation that Daniel and I were a part of, someone made a comment about how “[they’ve] only been married for a month and aren’t having sex anymore, so there’s no way that you can be still!” (Because we have been together for 17 years.) And then there are comments on this lady’s post to the effect of “omg you’re going to emotionally scar your children by having sex while they are awake/in the house you suck at parenting and marriage.”

I thought part of being a good parent was to demonstrate a happy and healthy relationship for your children? But why does that mean having to have a super-quickie in 3.5 minutes (and that implies one person got much more enjoyment out of the activity than the other) so that they don’t know what you’re doing? I know you’re not going to leave a baby crying while you get busy, but if your kid is more than like, two, then they’re old enough to understand that they don’t always get what they want immediately and that parents have needs too, which – shockingly – might not involve them.

I really am curious about this. Though my children might like to pretend that Daniel and I do not ever do anything but lay together in our bed reading our iPads and being completely boring, I know that they know that is not actually reality. (And we readily admit to finding great amusement in jokingly reminding them occasionally that such activities do occur. It’s like feeding your toddler lemon.. you know you probably shouldn’t, but it’s just so easy and their reaction so hilarious that you really can’t help yourself.) I don’t understand why they think it is disgusting for us to have sex/make love/fuck (whatever term floats your boat). I don’t recall thinking that way when I was younger. I’m not talking about considering the ‘in-and-out’ (soz), logisitcal, nitty-gritty details of what we do, because yeah – thinking about anyone else’s sex life apart from your own in that kind of detail is kind of weird. But they’ve picked up the idea from somewhere (certainly not here) that the very concept of there being a physical aspect to our relationship is gross. Even kissing (and not even fully gung-ho kissing, either) each other in their presence is enough to elicit complaints. But I just don’t know why. It could just be yet another example of how I was not a typical child but I always understood that kissing, hugging, touching, making love were all pleasant ways for adults who love each other to share affection and I don’t remember ever thinking that was disgusting. (Now that I am an adult I also understand that some people like to do these things with people they don’t necessarily love, and while I don’t personally relate, neither do I particularly care as long as everyone is informed and consenting.)

But back to the whole “parent sex” thing, where you’re just about acting like fugitives to hide from your children to get a few minutes together when it’s been “almost a month.” Is this really real? Like do normal everyday reasonably young and healthy couples really go that long without fucking? It’s like that whole “six week rule” after you have a baby. No one actually does that and waits for permission from someone not attached to your genitals before starting to use them again, do they? For most people, does becoming a parent really mean that other people get to set the rules for your sex life?