boring

I feel like I am getting very boring. All I seem to talk about is me being depressed and anxious or me being in pain or Stephanie being in pain. On the one hand, those things do take a lot of my attention. I don’t know if I ever wrote it, but she got examined and tested with a bunch of shit from the Endocrinology Clinic at the Children’s Hospital but they could not figure anything out. The doctor was actually really, really fucking awesome and even though he did not do anything in terms of making progress in figuring out this problem, he was kind and compassionate and explained everything and was pretty much the complete opposite of Dr. Douche. (Who actually blocked Stephanie from being re-assessed by the Pain Clinic, despite the request from the Endocrine people, because he had decided a year ago that it was just all in her head.) In the end, what it boiled down to, though, was that although she has a variety of tests that have some results that are not quite normal, when put together they do not fit with any condition that they know about or are able to treat. So, yes. She has something, and there IS physical evidence that supports my continued assertion that it is NOT “just” a somatic disorder.. but it’s either so rare or such an unusual presentation that they can’t do anything about it.

So I was disappointed with that outcome but not angry at the man. We like to think that with modern medicine, anything is possible but I am smart enough to know that it is not. However as a mother I can’t just accept “we don’t have answers at this point in time” as an outcome that is satisfactory in terms of my daughter’s well-being. So I feel like the weight of figuring out this problem is pretty much resting on me, now. All the ways in which I am not qualified to research and theorise and hypothesise are constantly running through my mind. I think about everything Stephanie has ever said or mentioned or complained about and try to decide if it is relevant or if it was a random one-off. The thing is.. just about every possible combination of symptoms I try comes back with the same single result: CRPS. And we’ve been told in no uncertain terms that it’s not that. Very difficult situation.

Anyway, that’s not exactly where I was going. After the being told that it isn’t CRPS, Stephanie was referred to the Youth Mental Health people because Dr. Douche said it was somatic. She’s been going there nearly a year now and there’s not been any improvement in her symptoms. One problem is that she was referred to the psychiatrist registrar and they work on six month rotations. So she just started to make some progress and the person she was seeing got sent to Logan instead. Now we are soon going to have the same thing with the new person they had. So he’s suggested moving her to psychologist care instead because they are permanently based there instead of rotating all the time. In the process of setting up for this transition he asked her to consider a couple of questions.

1) What does she see when she thinks about the concept of “being well?” (Given that the basic idea of this and any other treatment is to “make her well.”)
2) Who is she, what is her identity separately from the illness? What are the other things that define her, and how can we get those back to front and centre rather than the limitations of this pain being the focal point of Stephanie?

And I’ve not always been really keen on this guy. I loved the lady she had before him. I don’t think he’s bad at his job, I just think he’s not necessarily the best fit for Stephanie. Unfortunately we don’t get to pick and choose in the public health system. But these questions.. I think they’re so important. For everybody, maybe. Right now, especially for Stephanie. And I thought that they could be worth revisiting for myself too.

The other day the girls had a bit of a disagreement about someone going to get something that had been left in the car. Abigail refused because she said “it’s not like you’re sick or something.” To Stephanie. Stephanie got offended and slowly clomped down the stairs muttering about how she IS sick. That was interesting to me. I’ve come to view “being sick” as an entirely different thing to being “in pain” or “having a chronic condition.” I’m not sick. But it’s not really accurate to say that I’m entirely well, either. I’m always working uphill against the clouds in my mind and the limitations of my not-straight spine. (Gay spine. Curved, like a rainbow. Oh, the lolz.) If I really consider “sickness” I tend to see it as something transient, non-permanent. You can and do recover from being sick, reasonably easily, usually. I’m not injured, either. Injuries also heal. Some faster than others, but they heal. And it sounds kind of silly to say this but I didn’t think of myself as having a chronic condition, really, until I started having to process a lot of information and thoughts to do with what is happening with Stephanie. I knew I had a rare condition. I’d never given thought to the true meaning of the word “chronic” though.. because it gets used, I think, to mean “severe.” A bad, serious condition. But chronic is ultimately derived from a greek word χρόνος / khrónos which is referring to time, not intensity or severity. It does happen that a lot of people have chronic conditions that are serious and dangerous if not fully managed. But you can also have a chronic condition that can be of lower impact on your life. Or, as for me, one that is becoming worse as I get older.

This entry has been a casualty of blogus interruptus, which is an ancient Latin term meaning 'life got in the way.'

boring

naughty crazy

Last time I had to go to the doctor for new prescriptions I also asked him for a Mental Health Care Plan so that I can get some more mental health. I suppose that being a person that thinks all the time has it’s good points and bad points. Probably being a thinker is not necessarily good in terms of mental health. But I have always been a thinker, even before I remember being depressed and anxious. One good thing though is that in having such a constant variety of thought threads in my mind, inevitably sometimes they are considering the hows and whys of me. And this has allowed me to identify some stuff that is harmful and not helpful. Things I did not necessarily make connections about before. I don’t know if it’s “repressing stuff” or if it just took that long for me to figure shit out. But either way, having identified that certain things have left me damaged in ways that I don’t necessarily have to be, I was able to work myself towards seeking some help to deal with that shit.

It’s the working towards things that’s the hard part. The first was asking for the MHCP. The doctor told me to take it to a place called headspace. I’ve heard of it before, seen ads maybe. it took me a few weeks to build up to ringing them up. So I explained that I had the Care Plan and I wanted to see someone and the lady made an appointment and then started taking some of my personal details for their records. And that was where it went wrong. Because she asked my date of birth and when I told her she informed me that I could not go there to get help because I am too old. They only deal with people between 18 and 25 years old.

Because you should have your fucking shit sorted out by the time you’re 36, you crazy bitch.

Well. That fucked shit right up and I went back to zero. Negative zero. It was a problem and I had worked up to the immense effort required in reaching out and basically walked into a solid wall. I still had the plan but I did not know if I could use it somewhere else or if I had to go back to the doctor and get another one. I did not know where else I potentially could use it. I did not have the energy to figure these things out. So it was on my desk. Waiting. Existing.

I don’t know how long it was, but I had to take one of the kids to the doctor for something. And by some miracle of celestial alignment, magnetic fields, tea leaves and atmospheric pressure.. I was able to casually ask him, on the way out. “Hey, that thing you wrote me last time. They didn’t want me. Can I try somewhere else or do I need to get a new one?” And he told me I could just take it somewhere else.

So my somewhere else was the Adult side of the place that Stephanie got referred to after she was de-diagnosed with CRPS. It took me time, again. To work up to the asking. I had the paper in my bag lots of times we went there. Until I decided I was definitely going to ask this time. Last week. And I told Stephanie, so that I would have to do it. So at the reception I said I had the MHCP and referral from my doctor, what was the process for getting uncrazified? Well they didn’t even fucking know what to do. Could not quite wrap their minds around the fact that I had the referral from the doctor rather than the doctor having sent it straight to them. They searched for me in their computer. Shockingly, there was no referral in it. That’s because I’m crazy, not a fucking dimwit. It was so unprecedented a situation that they had to all ask each other what to do and then call the assessment team to ask them what to do. Eventually they told me to wait and I waited and after a while a guy came and asked me to go in so he could have me explain all of my various issues. It sounds so simple to say that but it isn’t. It’s really fucking hard. Feeling and living things is hard enough. When you’re just trying to push it away far enough that you can manage to get through each day. When you actually have to grasp it and hang onto it and look at it and touch it enough to be able to articulate it to someone else. It hurts. It is exhausting. It is worse than being naked. It is worse than getting a pap smear. And a mammogram.

So he took notes and asked questions. And then explained that they have their group meeting conference things where they discuss each person who has come into the service so that they can decide the best way to help them. But he also gave me a list of psychiatrists and psychologists who bulk-bill or take the MHCP things. And he told me that someone would contact me on Thursday after they’d had the meeting. Come Thursday, 14:30. On my way to pick Kristian up from school. Phone rings. You would think that university educated people would be smart enough to think that two thirty in the fucking afternoon is not the best time to call a person that you know has kids. So I didn’t answer, because that is illegal. And they call from private numbers so it’s not like I could have called back. Even if it wasn’t a private number I probably wouldn’t call back anyway, ’cause, you know, crazy. I wasn’t sure what I was supposed to do then. Were they going to call me again or was that the end of it? How long should I wonder and worry about this for?

A bit over a day. Friday, quarter past five. Some lady calls. Wants to check on me and see how I am going since I saw the guy the other day. I fucking said I was fine, because what the fucking fuck does she think I am going to say? YOU ALREADY KNOW THAT I AM NOT FINE AND I AM TRYING TO ASK FOR HELP TO BE CLOSER TO ACTUALLY BEING FINE. So she asks if I have made an appointment with one of the people from the list the guy gave me. I said no and she basically started interrogating me as to why not. Um, because I didn’t know I was supposed to? Because he said that they were going to talk and decide what the best plan for me was and then let me know? She huffed and sighed in a really exasperated way and asked if I could do it by Monday, then. Stupidly, I was honest and said I didn’t know. More sighing, wanting to know why. And that’s where I got kind of pissed off and exploded a bit and said that it’s not exactly EASY to do this you know, and it’s especially hard given the fact that you’re now the second place that has told me that you can’t/won’t help me because I don’t fit in your fucking niche target demographic of crazy people. I didn’t actually swear at her. And I didn’t use the word “crazy” because people tend to frown on it. She didn’t have anything to say to that really. She asked me when I had first seen my GP, to get the plan. I’m like, WTF, IDK, relevance? May, I think. May? Sighing and huffing. Well, you really need to make an appointment with one of those people and I will call you on Monday to make sure you have done it.

Because treating you like a delinquent toddler is a long established, effective technique to get results in the field of mental health.

So I had to stop this so I could have some lunch, go to the supermarket and pick people up from school. This cow rang as we were leaving the shops. It fucking blows my mind that these people can work in mental health and yet be so brusque and pushy. Well, you know, ANYONE working in health care should be qualified with a big load of compassion and caring, but especially so when you’re in the specific field of working with thoughts and emotions. I told her I’d sent an email inquiry to a psychologist, and she was clearly not happy with that because email. I hadn’t had a response at that stage. So she said she would call back again at 4 to check if I had. Thank fucking fuck she didn’t. I don’t like to be rude to people. I am good at being mad and swearing about people in private but I don’t actually often do it to their face because it’s rude. But there does reach a certain point where it’s just really fucking difficult to keep using manners and being nice when you aren’t getting that same consideration. And I’m seriously fucking confused at the modus operandi here. Like. We don’t want to treat you, but we will nag and berate you until you find somewhere else that will.

Turned out the one I emailed doesn’t do bulk billing despite it coming up for one of the names off the list and that person being mentioned on their website. In the end I gave up and asked Daniel to call one of the numbers for me. Their appointment making person was already gone (don’t know who was answering the phone, then) so they have to call him back tomorrow.

naughty crazy

unexpected things 

It is the unexpected things that really hit me hard. I started this out thinking I was just saying something about my body and muscles and bones but I realised that it really kind of applies to my mind as well. But anyway. Yesterday I did a thing, which ai thought was a productive thing to do on a Saturday afternoon, and instead it turned out to be a stupidly ill advised thing which I am still paying for more than 24 hours later. The thing was washing some windows. A while back we got one of those things you attach to the hose to wash windows but we didn’t get around to doing it and I took my curtains down to wash and noticed the windows were a bit dirty so I thought I would do that. In hindsight, I can see exactly how it was a bad idea. Second storey windows means holding the bottle of stuff with the hose up high over your head to aim it at the windows and then continuinung to hold the hose up in order to rinse it all. Anything that involves uneven usage between the sides of my body is a big mistake. Strangely enough, though it is often the case, the muscles protesting in tightly knotted pain are the ones up and down the left side of me, but it was my right hand and arm I was using to do the window washing.

But obviously I did not have the benefit of the hindsight before I did this and it seems like such a simple and innocuous task to do, not one that will leave you in such pain that you look at yourself in the mirror as you are washing your hands after going to the toilet and find yourself thinking about people with the “suicide disease” and wondering if this is how they  (Because the connected muscles have tensed up all the was from below my scapula, up through my neck, across my scalp and down into my cheek.) I know that this will settle down in a couple of days, though unfortunately I know it will also happen again despite my best efforts to not do wonky things. Sometimes it just happens with no apparent triggering activity. Sometimes it’s not my back-shoulders-neck-head-face but the muscles right in the lower back and around my hips. This seems pretty common from what people say in a fb group I joined. Also from that group I have come to the conclusion that as shite as I sometimes feel, what I am experiencing is quite mild compared to many others. Sometimes people share the x-rays and MRI pictures of their spines, and some of them are really fucking horrifying. And this is all for a condition that many sources still list as causing little to no pain. And lots of doctors are telling people they shouldn’t be in pain from Scheuermann’s Disease and essentially telling them that they are wasting time. How any somewhat sane person could look at the imaging of these bones and expect a person should have no health deficit due to their condition is beyond me. In one that I saw, the lady’s spine was so curved that it was almost U shaped. 

I feel like I shouldn’t be complaining when there are people worse off than me. Though logically I know that the suffering of others does not negate mine, there’s that entrenched mindset we have been taught that we should not complain about our lot if there would be people who’d be happy to take it on because of how much of an improvement it would be for them. Only the poorest and sickest can ever feel sorry for themselves. The rest of us should just be grateful because “it could be worse.” Like those two things must be mutually exclusive. I am glad that I’m not more curved but that doesn’t mean I don’t imagine what it would be like to have a spine that holds you up the way it is supposed to, doesn’t make you look like a freak, and muscles that are not so over-tired that it takes very little to make them knot up.

unexpected things 

misconceptions

A little while ago a few different people shared a link to this article on Facebook. It is quite a long article and well worth reading, but to summarise – for her whole life, the author had been taught and conditioned to believe that every illness has a cause and people who live eating a balanced diet, getting enough exercise, avoiding drugs and alcohol and other toxins, who are in touch with their emotions and have no inner conflicts have no reason to ever fear becoming ill because it is only people who don’t bother to take all of the steps to give themselves the best chance at health who end up getting sick. When her daughter was born and was not the picture perfect “healthy newborn” that everyone desires, she was absolutely unprepared to deal with all of the emotions and thoughts that come with learning that your child has and will continue to have health challenges. She thought she’d done all the right things, so it never occurred to her that she could have a less than “super human” baby. When she did, everything she believed was turned upside down and it took a long time for her to work through all the doubt, questioning, and confusion that came with this new reality.

Here’s one of the best things she has to say:

If you buy into a false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.

It’s so simple but so fucking profound. You can see evidence of this everywhere. How many depressed or anxious people have been told to “just snap out of it?” And because they are not following this advice, clearly they must want to be unwell, and if you’re choosing to live like that when it’s so simple to just snap out of it, you don’t deserve for healthy people to waste their energy on feeling compassion for you.

It’s not just mental illness, though. Diabetics – who have to be so careful about what they eat, who often struggle with weight despite their carefully planned meals and exercise, who can also be affected with side effects that affect their vision, nervous system, heart or kidneys. But there’s a persistent (incorrect) stereotype in society that people with diabetes have diabetes because they ate too much sugary food. (Example maths problem: John has 30 chocolate bars and eats 28. What does he have now? Sarcastic, uninformed answer: John has diabetes.) But because everyone knows it’s unhealthy to eat too much of certain types of food, it’s their own fault and they made their bed and now they need to lay in it and not expect everyone to feel sorry for them. [Edit: came across this very thing a day or two later.]

So reading that article really resonated with me. Because further to the idea that if you’re sick or disabled, it’s your fault – is the idea that if sickness, weakness, pain or disability is a permanent thing for you then you should have learned to “deal with it” and should not burden the rest of the world with your complaints. Sympathy or compassion for illness is a limited time offer. Expecting consideration from other people past your “compassion expiry date” means you are seeking attention, wanting special treatment, milking it for all it’s worth. Other kids at Stephanie’s school have said things like “I wish I didn’t have to do P.E.” I have heard people say to those that have a Disability Parking Permit, “Oh, it must be nice to get to park at the front all the time.” These small accommodations are held against you as advantages you get that other people don’t – with no consideration for what you have to deal with every day that has qualified you for the so-called “special treatment” in the first place. It is seemingly too much for people to stop and think – hey, yeah, it must be nice to have parking spots close by.. but I bet that if she could choose she’d take having to walk 100m further at the shops than being in pain all the time.

Also, having established that any illness or disability is the fault of the person dealing with it, and logically followed that through to conclude that they are undeserving of any compassion because of it, another conclusion that people seem to arrive at is that any unusual needs a person might have because of said illness or disability are unimportant – or at the very least, less important than the needs of people who are not afflicted. When I was in high school and had my brace, I found that in some of the classrooms at school it was extremely awkward and uncomfortable to sit in the chairs and work at the desks they were paired with. I solved this problem for myself by simply choosing to kneel on the floor instead, because it put me in a much better position to comfortably see both my work on my desk and what was going on at the front of the room. One teacher, though, would not have it. You’re meant to sit in a chair and that’s that. Explaining why I was on the floor had no effect. Pointing out that I was not causing any disruption to anyone else was not relevant. The chairs are there for you to sit it and you will sit in it. (Side note: I really wish I could go back and slap that bitch in the fucking face.) Stephanie was recently excluded from several classes where the students were given the opportunity to learn and be awarded a first aid (CPR) certificate because no one could be bothered to arrange to have the class moved to a room that she could access with her walker – despite her asking the teacher in advance because she’d been made aware of the issue by some of her friends who had already had that class. Look at the story of a girl who spent most of her high school years battling TWO different types of cancer. She hasn’t quite completed all of the necessary requirements because of the toll it takes both physically, mentally and the time needed for the treatments it takes to try to not die. It seems obvious that she’s been making extreme effort to keep up as best she can, even around all of the other stuff. There is clearly a plan in place for the outstanding work to be completed in a not-unreasonable time frame. But the school district refuses to let her participate in the graduation ceremony because making exceptions “diminishes the accomplishments of the graduates.” It might be called a graduation ceremony but it’s about more than just the actual graduating. It’s a rite of passage that marks the end of your standard schooling. And.. accomplishments of the graduates? Did any of them accomplish their schooling while TRYING NOT TO DIE? She is literally being punished for having an illness that prevented her from making school her only focus. Because as students we are told – if you do not knuckle down and have a singular, tunnel-vision like focus on your education, you will end up with no prospects and your existence will become a burden on society.

And society – or at least many of the politicians in charge – have decided that they have had enough. Why should healthy people have to support your selfish choices to be less than perfect? For they will never encounter an unexpected illness, they will never have an accident that leaves them paralysed, they will never be victim to circumstance that leaves their health, housing or education unstable or unassured. And if they did happen to have one of these unanticipated events occur, well, they were smart enough and motivated enough to be rich enough to handle it.

It’s not just your health (or lack thereof) that is your fault. I’ve come to realise by the comments that politicians, wealth privileged or health privileged make that any situation in your life where you are not “winning” is your fault and there is always a simple solution. Many, many Australians these days despair that they will never be able to afford to own their own home. There are lots of factors contributing to this situation but it seems the primary one is that costs for homes (and other things) have risen much more rapidly than incomes, and people simply can’t keep up. The thing that they are doing wrong, though, is that they are neglecting to get a “good job that pays good money.” Clearly, there are lots of these good positions languishing about, unfilled, because people are faffing about, stupidly working themselves to the bone in half-rate jobs that don’t pay the kind of money you need to buy a home. This statement is not just a one-off, though. Nearly two years later, a different minister is claiming the exact same thing: “[…] enabling young people to get highly paid jobs, which is the first step to buying a house.” The implication in all of these assertions is that if you can’t afford to buy a house, it’s because you’re choosing to not work in the big bucks, highly paid jobs. Of which there are obviously plenty.

It’s a worldwide issue. An American politician claimed this week that being poor is “a state of mind,” due to people having a “defeatist attitude.” I don’t think that having a defeatist attitude necessarily has to mean that you have given up and are not trying. People are having a defeatist attitude because they have been trying, working, striving, stretching for years, and watching others around them do the same and they are still failing to manage to achieve the goals that we are being told are easily attainable if you just work hard enough. If you just want it enough. But most of them are still trying, despite mounting evidence that it will never get them anywhere near where they want to be. At an event at the girl’s school this week, the principal was addressing the students and telling them that hard work was the key to making their goals and dreams a reality. That the most successful people are the ones that work the hardest. This is setting them up for disappointment. I’m not at all saying that hard work isn’t important, but there are myriad other circumstances and variables that factor into whether you will be successful – and most of them, you can’t control. This understanding has been around for ages. It’s not what you know but who you know. If you are not fortunate enough to be already present in social and business circles where you will be exposed to opportunities, sometimes it doesn’t matter how highly skilled or hard-working you are.

These linked topics underline part of what really scares me for the future. Stephanie’s, especially. As long as we remain unable to find an answer to what is causing her constant pain, we have to accept the premise that it is also unlikely to be possible to find an effective treatment. And that means that she will be facing all of this with a disadvantage due to the disability this condition confers upon her. While it may be law that it’s illegal to discriminate against people due to disability, I think most people would acknowledge that it still happens, probably due to the prevalence of the aforementioned perception that everything has a cause and a cure and if you’re not cured, it’s because you’re choosing not to be by not trying hard enough. Disability support in Australia is near impossible to access these days. One of the things you must do in order to qualify for a disability support pension is prove that your condition has no chance of improvement within the next two years, you have to show that you’ve received appropriate specialist care to stabilise you as best as possible. When your condition is undiagnosed because no one knows what’s causing it, it’s impossible to get the appropriate care and impossible to know if or when it might ever get any better or worse. So the mere fact of being a zebra basically means that you can’t qualify for help. The most frustrating thing is that Stephanie does not want to have a disability. She wants to go to university. She wants to not be in pain. She used to want to be a veterinarian, but I think now she is leaning more towards a human-focused health care role. As she is right now, she will struggle to just navigate around a university campus and find the endurance to attend all the classes and complete all the work. There’s practically no chance that she would be able to have a part time job to help support herself on top of that, which means she will be forced to remain reliant on us. And of course we’re never going to abandon her but that isn’t fair either. Gaining a measure of independence is an important rite of passage as one attains adulthood. I want desperately for her dreams to remain within her reach, but it’s hard to keep believing that they will when so many things are stacked against her. Not rich, not healthy, not male, not straight, red-haired. At least she’s white. Pasty white AF.

misconceptions

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