angry

i have been feeling a bit angry at the world lately. angry at people and circumstances and things that mean that things are a certain way. usually a difficult way. i’m finding it more difficult to remain polite and civil about some things.

like, i know that it’s not stephanie’s teacher’s fault that she has to ask for proof that stephanie was at a doctor’s appointment last week, which meant that stephanie missed a lesson that was part of a planning thing for an exam. so stephanie asked if she might be able to get an extension since they were supposed to specifically use these few classes to pre-write their essays, and then squish enough keyword notes into 100 words that they are allowed to take into the exam to allow them to rewrite it during the actual exam. (yeah, it sounds pretty convoluted to me, too. but whatevs.) i did not know that we would have to prove that we were at a legitimate appointment so i didn’t think to ask the guy for a medical certificate. as it happens, i did take some photos of the pathology request forms because there was a big list of tests and i wanted to look up exactly what they all are. so i said that was really the only proof i could offer, and they said, yes, send that. so i did. but why do i have to? why are they treating stephanie (and by extension, me, as (one of) the adult responsible for her) like she has done something wrong, has skipped out on school for kicks, and placing the onus on us to prove that we were not doing the wrong thing, rather than accepting our word that we were not? that’s not how “innocent until proven guilty” works. and if it’s good enough for courts of law, then why is it not good enough for schools? so, yes. i am angry. because my daughter has worked hard her entire time at that school and had consistently good results, which continued even through the last year or so despite the fact that she’s got this mystery chronic pain causing illness, and that is apparently not enough to demonstrate our trustworthiness. i am angry because it is fucking hard enough trying to get people to help and figure out what is causing this and if anything can be done to improve it without being treated like a freaking criminal for doing so.

and actually there is a list of other reasons why i am angry at school. many of them are related to what i believe to be sexist and outdated policies which place different requirements on students depending on their gender. which, you know, most people realise that in this day and age is not acceptable. but apparently if it has been like that way for a long time and the p&c have approved it then little things like gender equality and discrimination don’t matter. but most of all i am angry about how unaccommodating they have been in regards to stephanie’s needs. last year, after her doctor at the cymhs called the school and explained to them that she really did want to go to school but she needs some adjustments made, and they finally made some effort to make changes to enable her to be going, one of the things we asked them was if she could have her uniform modified somewhat. because extreme fucking pain in her legs that hurts whenever they are touched. that hurts when she has to put socks and shoes on. no, they said. not possible. the uniform is an immutable law, it cannot be changed or circumvented in any way. it’s as unavoidable as gravity. no exceptions can be made. not even for things like CHRONIC FUCKING PAIN

TURNS OUT, the education department of queensland instructs principals and schools to “develop a process for managing special circumstances of particular students” and to “consider students with physical impairments requiring greater flexibility in interpretation of dress codes.” now, it could just be me, but somehow i don’t think that when they say about “developing a process” they mean that they process should be flat out saying NO to everything you ask. so, angry? yes. because i am the one that bears the brunt of most of stephanie’s moods when she is tired and hurting after a day at school. i am the one that has to watch her sob and scream and fade as this goes on and on and we still have no answers. and they are so hung up about their fucking “reputation” that they think it is fine to make a 15 year old girl experience more pain just so she can go to school.

i am angry at myself. always angry. disappointed. the thing is that i work so hard, to do what i do manage to do. to take care of my children and my husband. but it isn’t ever enough and i don’t know how i can possibly ever be enough. i don’t want to be a burden. i don’t want to be the reason that we might never be able to have our own home because we only have a single income. i don’t want to be the reason that my children resent us because they don’t have their own bedrooms or their own computers. (those things, i know they don’t need. but it would be nice to have the ability to give it to them.) i don’t like saying no all the time when they ask for something. (and yes, i get that sometimes kids ask for shit and you have to say no. but when it feels like you are constantly saying no, it gets hard.) this guy, several years ago, when i applied for the disability pension, listened to me lay myself bare and explain all the problems in my head and in my body and he still said to me, no. sure, you have problems but you can get some counselling and be better. but i have already spent pretty much my whole adult life striving to be better than the voice in my head, the pounding in my heart, the sweat on my skin, the cloud over my head. i AM better. not better looks like me trying to curl into a tiny ball under my desk or my bed, too afraid of the world to look at it. my better is me still having to sometimes tell my children that i can’t take them to the park because it is too hard. my better is me starting from morning on thursday, working all day up to having the ability to drag our bins from where they go to put them out onto the street for collecting on friday morning, because people will see me. my better is not being able to hang washing onto the clothes line because people outside can see me and because it hurts my back to repeatedly lift my arms up to peg things up. my better is getting a sharp pain in the lower part of my back while i am washing dishes, and having to slowly back away from the bench while holding onto it, gradually bending until the pain eases, then go and do something else for 5 or 10 minutes until i can do some more. my better is seeing the grass get longer and longer and knowing that trying to mow it will mean not only working myself up to the exposure that being outside brings but resigning myself to feeling especially creaky and decrepit for several days afterwards. my better is being bothered by a hundred things that should only be a minor inconvenience, but in reality cause a rising panic that everything is spiralling out of control and i can’t reach to grasp onto anything solid. so when that guy essentially implied that i wasn’t better because i hadn’t tried enough, it was a hard blow. it took a long time to get to the point of understanding that this is who i am and what i am like and that there might not be any better better than what i already have. and having that realisation made me feel alright about asking for help. turns out, the voice in my head that always tells me i am not good enough, that i am doing it wrong… is right. i am even not good enough at being anxious and depressed and deformed and in pain. and that is why i am angry at myself.

i am angry at the person who put that voice there. who found it so impossible to believe that accepting her could truly be as simple as knowing that someone i loved loved her. who pushed and picked at every insecurity a child had and then added more, just to make sure that she was doing a thorough job trying to alienate me so much that it would prove that i didn’t mean what i said and that i had hated her all along after all. the words of someone i trusted that told me so often that i was not normal and not like other people and selfish and strange and disappointing. and when it is someone you trust, you believe them. and then your own voice learns to tell you all those things. and i don’t know if it can ever learn not to, and that makes me angry.

i am angry at a society that forces me to opt-in to allowing my husband to do things on my behalf. i should not have to authorise him to make an enquiry for me. i have already authorised him with my heart, every time i tell him that i love him. i have authorised him with my soul when we stood together and exchanged vows and rings. i have authorised him with my body, every time that i use it to share in pleasure with him. the default setting should not be one that assumes that people’s spouses cannot be trusted with information. how about, if you don’t trust your spouse to ring up a company or government department on your behalf, then they maybe should not be your fucking spouse. i am angry at the backwards asshole parts of this world that will not grant equality to same-sex couples because it would destroy the “sanctity of marriage”. news fucking flash: they have already destroyed the sanctity of it, themselves, by refusing to accept my husband as my voice, my proxy, my advocate unless i explicitly request so. that is what it means for him to be my husband. it is supposed to set him above all others in all matters pertaining to me.

and that all leads back to more being angry at myself. because things wouldn’t be a problem if i was a normal person. a not anxious, not depressed, not introverted, not me person.

angry

deflate

Feeling rather flat and deflated today. We had so much hope and expectation that yesterday we were finally going to be talking to the people who would help and have real and practical solutions to help Stephanie be better. And we got up at the crack of dawn and we drove through the morning traffic to get to the hospital for 8am, and we had all these back-to-back intense consultations with a variety of different types of people. In the three hours between 8 and 11, we talked to a physiotherapist, an occupational therapist, a music therapist, a social worker, a pain specialist doctor (and the nurse practitioner who accompanied him and appeared to be his scribe), a psychologist and a psychiatrist. For some of them Stephanie talked to them separately to me and my Mum.

Then we had to amuse ourselves for two hours while they were meant to be putting together the best plan of action for Stephanie to be recovering, and we came back after that expecting to hear suggestions for treatments and adjustments and whatever..

Instead the doctor guy sat us down and said, “Actually, nah, she doesn’t have CRPS. So we can’t help you.” No, actually, what he did was waffle around before actually getting to saying that and then tried to tell us that it was actually a good thing because now we have a clear diagnosis that it’s not that – at which point I interjected to say “So what IS it then?” and he twiddlefarted around a bit more and said that it wasn’t really any specific thing but what he thinks is that she’s “somatizing” and that’s why she has pain. So I said, “So if it’s not a specific thing and you can’t give it a name then it’s not really a clear diagnosis, is it?” And he kind of shrugged and told us that while he supposed you could look at it that way, it really was good because he felt very certain that it wasn’t CRPS and that meant he could pass the problem off to someone else to deal with and feel very pleased with himself that he’d done something meaningful and useful for people who are clearly desperate for help.

(That last part may have just been my interpretation based on his manner and body language.)

So we asked him to explain why he feels so certain that it’s NOT CRPS when both our GP and the previous pain doctor we saw at the hospital felt quite convinced that it is. On the matter of the GP, he essentially said that GPs are Jon Snow and it’s beyond their paltry understanding. With the other doctor, he said he had better information and asked better questions than her and did better examinations than she did.

So what is it about his examination that makes him so sure it’s not CRPS? Well, Stephanie was walking, for one thing. People who really have CRPS won’t do that because it hurts too much. I pointed out that EVERY SINGLE FUCKING PERSON we have seen trying to get help has told us that UNDER NO CIRCUMSTANCES should we let her not move about JUST BECAUSE IT HURTS, because that would make it WORSE, so WE ABSOLUTELY MUST FORCE HER TO DO STUFF EVEN KNOWING THAT IT WILL CAUSE HER PAIN. And since we HAVE FUCKING DONE THAT and made her miserable and made ourselves miserable and guilty and tried to console ourselves that we are doing it for her ultimate well-being… he is deciding that she can’t really be bad enough for it to really be this.

And something about the spinal cord being involved in the sensitisation of the skin and stuff and since she’s wearing clothes it must not be the spinal cord, it’s just something else. Despite the fact that he stroked her skin and bent her limbs and poked her with a fucking paper clip and watched her grit her teeth and close her eyes and do her best to tolerate it BECAUSE SHE FUCKING WANTS TO GET BETTER and if these are the diagnostic tests necessary then she just needs to manage, somehow. But she didn’t scream enough or something so it’s probably not CRPS. And people who have CRPS can’t tolerate clothes touching their skin. When in fact one of the very points we made is that SHE CAN’T tolerate clothes properly – I had to make her a floor length, loose nighty out of a t-shirt and old skirt of mine because she can’t put on pyjamas, and she doesn’t want to fucking freeze to death. And her choices of what to wear in public are restricted to two old dresses of mine that are very loose and flowy and, again, floor length on her which she fucking puts up with because IT’S FUCKING WINTER AND EVEN SO, YOU CAN’T GO AROUND IN PUBLIC WITH NO FUCKING CLOTHES ON. But anyway. She really wouldn’t be able to tolerate it if it really was CRPS. (I didn’t realise that illness comes with a built in breaker switch that makes it cut out when you reach the level of what you can tolerate.)

And she’s had some problems with incredibly heavy and painful periods which we have been trying to alleviate somewhat. She’s been taking a BCP and it helped a bit but not hugely so it was switched for a higher dose, which still didn’t give enough relief so we need to see a gynaecologist, but when you have all this pain and you have other kids to look after sometimes things need to get prioritised and we sort of only just knew in the last few days that the increased dose wasn’t doing what was hoped. But anyway. Because they looked at her whole body and she is having her period right now and they pressed on her sides and her lower back, it was hurting her. But they didn’t really ask about that fully and just assumed it was all the same as the other pain and the leg stuff, and parts of her upper back hurt because it’s a real fucking effort for her to walk and she uses the crutches to make that possible like we were fucking told to do,
and that’s not how CRPS works. And ok: we might not have specifically said that is different and not part of the same thing but I thought it was pretty fucking obvious when they are looking at her stand and walk and how she has to lean her weight into the crutches that it was the effort from doing that which makes her back hurt, not the fact that the same pain in her legs is in her back too. These are people who have fucking degrees in this shit. So doctor guy was saying stuff about “what is happening when a woman menstruates” in a really “explaining shit to young kids” tone and I really wanted to fucking yell at him. Hey, PENIS FACE. WE *ARE* WOMEN. WE FUCKING KNOW SHIT ABOUT MENSTRUATING. But anyway, the punchline of this was: stuff with periods = not CRPS.

Half of the people we talked to in the morning were people who are there to address how shit is affecting you. Social worker, psychologist, psychiatrist. And so of course we mentioned that how it is affecting us is that IT FUCKING SUCKS BALLS to be in pain or IT FUCKING SUCKS BALLS TO SEE YOUR CHILD/GRANDCHILD IN PAIN. And when you have some anxiety and/or depression thrown in there, it can be really disheartening and demoralising to have to do this every day. I mean, I am sure it is fucking hard even when you don’t have this on top of it. But this certainly does not help, either. And Stephanie of course admitted to her psych lady that she feels like crap because she can’t fucking do anything and hurts all the time. And I said I feel like crap because my daughter feels like crap and hurts and can’t do anything and gets sad and angry. But I kind of thought that it was obvious that she feels that way BECAUSE of the pain, not that she has the pain because she feels that way. She didn’t feel that way before this. She had anxiety related to tests and assessments at school and normal teenage things but not just general feeling like shit.

There’s skin stuff too. Where her skin gets all blotchy and mottled or very white or very red or very hot or very cold. She mentioned at one stage that she’d used our thermometer to take the temperature of her leg when this was happening and it was two degrees higher than the standard reading. Well, some people with CRPS have dry, shrinky, scaly skin that is almost retracting and disfiguring their extremities and it’s pretty nasty. And readings have shown differences of four or five degrees compared to the rest of the body. So clearly, her single reading of two degree difference measured with a thermometer designed for foreheads in a home environment is a strongly reliable piece of scientific evidence that what is happening is not CRPS.

What I feel like he basically summed it up as is: because you did what you were told to prevent the symptoms from becoming worse and have actually succeeded in preventing it from becoming worse, I am actually deciding that you don’t have this condition that other doctors have diagnosed you as having. Also, because of the menstrual stuff you are clearly suffering from hysteria and you’ve all told us you have a family history of being totally fucking crazy, so probably you just are totally fucking crazy and making your body feel pain because you have too much emotional and mental baggage to fit in your head and it has to get out somehow. Oh, don’t worry, I know you are in pain, I’m not saying that you’re not. I know that if we did like a brain MRI or something we would absolutely see all the pain areas lit up like a Christmas tree, and so we would know that you really are in pain but it’s because you’re making it do that. So you need to see some mental health professionals who talk to crazy people, not a real doctor like me who helps people with, you know, physical diseases that they haven’t given to themselves. But don’t feel angry or sad or frustrated because I have really actually done you a big favour by saying you have to start over being referred to yet another different set of people because when you see them they will really be able to help you so much better than I could because I am an insensitive fucking twat with no fucking bedside manner. And if you’re done crying and feeling stunned and dismayed and hopeless and making me feel uncomfortable, could we move it along now because your assigned appointment time is over.

What I feel like they told us is: you’re all crazy and clearly everything that is wrong with any of you is a result of you being crazy because it never happens that being crazy develops out of traumatising and painful things happening to people. It’s just you crazy pathetic people who can’t deal with shit and so you make it worse. Of course you don’t mean to, but that just happens. And it’s unfortunate that you have all these symptoms of a condition that another doctor and my own colleague have diagnosed but they’re wrong and I’m right and move along, now, please. It probably won’t be a long wait until you see the next lot of people but I really can’t say.

quote from harry potter

I think when we came out of there yesterday we were all feeling a bit stunned and a bit speechless and not entirely understanding how the guy had reached the conclusion that he did, despite asking him to explain it several times. And so, so let down that we had expected to finally get some real help and instead we get an undiagnosis and redirected yet somewhere else.

I don’t understand how this doctor expects us to just accept his conclusions without question, when he has just sat there and told us that everything is very complex and the other doctors we’ve seen didn’t fully appreciate how it was all complex and said it was one thing when he says it is not. If you are sitting there telling me that the other doctors, who we have given all the same information to, who have done the same examinations, asked the same questions.. if you are telling me that they are fallible and wrong and yet you don’t have any concrete and quantifiable evidence to support your claim that you’re right.. then why should I believe ANY of you? Why should I trust that any of them know what they’re doing? Why should I put my trust and hope in the next person when so far all we have gotten is nowhere? And why, if you acknowledge that Stephanie definitely is experiencing pain, and you think it’s because of fucked up shit in her head, and your team – the PERSISTENT PAIN team – has psychologists and psychiatrists on it, who as I understand it, are supposed to treat and help to fix fucked up shit in people’s heads… why is it that you won’t help her?

Having had a bit of time to calm down and think about stuff, we have come to the conclusion that all we can really do is keep doing the best we can like we have, and wait for the referral to the Child and Youth Mental Health Service to go through and hope that they really can do something to help. I don’t know if Stephanie does or doesn’t have CRPS. Either way, part of the treatment for that is supposed to involve a lot of psychological work in order to make your brain happy (or not stuck on dealing with bad things) so your body will be happy. So, we do that anyway. And hope that it works. Just, having no idea when this will happen and how long it might take and being back to square one in that we don’t really know if or when Stephanie will be able to return to “normal” is hard. How do you hope and look forward to something that might be in a week or a few months and might take a week or might take a few years to make a difference?

Like the blue fish says. Just keep hobbling.

deflate

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.

db50530d926b389a7c1c4a0e72531ccd

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

once again

It is school holidays yet again. There are good things about school holidays and less good things. The primary good thing about this particular holiday is, of course, the chocolate. And the public holidays, so it started off with four whole days of Daniel and that is very nice. 

I do like not having to necessarily get dressed by a certain time in order to take everyone to school. I especially like not having to go in to school sometimes. And not having to plan the rest of my activities around school times is handy. It makes the day seem so much longer. Which is sometimes good and sometimes not. The biggest challenge for me is that I run out of charge so much more quickly when there are three people there all day who like to talk and sing and play games and go to the park and whatever else they might think of, all while I am still trying to manage the usual jobs. They are incapable of being quiet and quiet is an essential thing for me. 

There is also the whole love-hate sibling relationship thing that taxes my brain’s capacity for understanding. I find it difficult enough to understand how people in general can be intentionally hurtful to ‘mere’ friends or acquaintances; to see it happening between siblings when just a short while ago they were playing, giggling and whispering, pretending and imaginating just defies my only child comprehension. Sometimes they make me cry. Sometimes because they are so absofuckinglutely hateful to each other. And sometimes because they do the simplest, littlest nice thing for their brother or sister for no reason other than because they are siblings.

I have been doing some thinking about my back. About a month or so ago I had a particularly nasty muscle tension knot headache event which coincided with monthly menstrual migraine and they kind of fed each other and it was not good. Because of the muscular pain I could not relax enough to get any kind of useful sleep to help the migraine and that made me more tense and continuing cycle bla bla. After several days Daniel stayed home so he could take me to the doctor to get knocked out. Sometimes when I am washing my arm in the shower I can still feel the tender area from the injection. But so, so worth it. I slept through about 18 hours or so and was much better feeling once I woke up. If a little groggy.

[interruptus]

once again