pain and stuff

Part of this thing that Stephanie has is that it prompts a lot of introspection and reflection on my part. There are aspects of her experience that I can relate to and some that I really can’t. I think that is one of the biggest problems for her, that so many people just have no reference point for understanding what it is like that they just do not know how to treat her, act around her, handle her. Even some of her friends unintentionally hurt her and I know that it is not because they want to. It is just that what is happening to her is so far outside their own experience that they are unable to adequately adapt their thinking in order to adjust to her new needs. And, well, it is really fricking difficult when sometimes even the brush of air molecules that you displace as you move around her prickles painfully against her skin.

She is having trouble getting used to the lack of freedom that comes with being less able than a normal person. And this is somewhere that I am trying to help her because I have learned over time to hold myself differently, sit differently, lay differently, stand differently, just do things differently to try to avoid putting a strain on my body that it can’t handle. But even this is difficult because I have been fortunate that I understand the weakness my body has and can make the adjustments in order to minimise and delay how it affects me. (To a degree. X-rays I got last year show that the state of my spine/vertebrae is about what you would expect to see in someone around 20 or so years older than me.) I am lucky because while I have a chronic condition, I am in the earliest, lightest stages of it taking away from me. I am unlucky because I know it will get worse over time and there will come a point where there is a limit to the relief I get for having learned how to move differently. This pretty much happened all at once for Stephanie. One day, she didn’t just have a kind of sore knee.. she had a really fucking painful whole leg. And then, one day, she had painful two legs.

Yeah. So much fucking fun. 

We have had a consultation with the pain specialising doctor now. I liked her. She didn’t fuckery us around like the dick at Redlands (I am not sure if I wrote about him. He was as much of an asshole as you could possibly get. He spoke down to us, told us that just because something had been diagnosed by another doctor didn’t mean that she actually had it; he criticised and belittled his colleagues – told one of them off for talking to us about the “patella” because that’s a “medical term,” not a word for everyday stupid people.) Anyway, she did a history and then had a look at Stephanie’s legs and asked her to move them and she could immediately see the mottling and stuff and moved on to talking about how we can try to fix it instead of trying to do reflex tests on a person who feels extreme pain at the slightest touch. She immediately and casually changed Stephanie’s medicine to an anticonvulsant which was amusing to us because the GP was like “no way!” at going that route because of her age. It is obviously just a thing outside of his area of comfort and expertise whereas it certainly isn’t for the lady handling kids with chronic pain all the time. She also explained a little about how we would now start seeing the pain “team” which consists of a physiotherapist, an occupational therapist and a psychologist. The way to “cure” the CRPS is to get all the misbehaving nerves to reset themselves. The way to do that is to work up to desensitising them, i.e. using them on purpose even though it really fucking hurts; while the psychologist keeps you from going mad and the occupational therapist teaches you and the rest of the world how to interact with each other in the least painful way in the meantime.

I think the doctor may have somewhat overestimated the efficiency of the administration side of the hospital, because she said that we would probably see the team people within a week but it’s been 10 days and we haven’t even got a letter with appointment info yet. I have started working myself up to having to call next week to find out what is going on. I might be there by about Tuesday.

It would be good if we could at least have seen them for the first time before my mum leaves again at the end of next week. I don’t really want to have to go during school holidays with no adult back up and Abigail and Kristian along for the ride.

But time appears to grow short.

[interruptus]

pain and stuff

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.

biggest risk, greatest reward

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.

state of the leg

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.
    https://www.facebook.com/photo.php?fbid=10153838694410070&set=pcb.10153838695350070&type=3&theater
  • 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!
    https://www.instagram.com/p/_qnRIEqDWG/?taken-by=jadeleth
yays and nays