mental health

hope and fear

jade, , , 1163 wordsLeave a comment

I’m hopeful that it’s more hope than fear.

I have found myself a psychologist. Not just any random one – theoretically one who is actually qualified to give me the type of therapy I need to have some of the kind of recovery that I want.

Although it hasn’t ever been specifically diagnosed by anyone, I think I have PTSD, or if not fully qualifying for the diagnostic criteria of that, then I certainly have disorder caused by traumatic stress :D And I discovered recently that “bulk standard” therapy, i.e. CBT, is not the right way to treat this kind of mental health problem. Who could have fucking guessed? I think someone higher looked out for me and a few weeks ago a reddit post popped up on my feed that was an AMA by a psychiatrist talking about treating PTSD and other trauma related things and what the current evidence based standards are and things like that. It was just the information that I needed right when I needed it. Ok, well, I could actually have done with it like 15 years ago but…

I also should not have to be the one figuring out what treatment I need. I understand the importance of people being involved in their own healthcare decisions but this is beyond that. GPs refer to any psychologist they know of that seems ok. Psychologists will take anybody, regardless of what mental health condition they actually have and whether or not they have the right skills to treat it. The worst part of this is that THEY DON’T KNOW that they are doing it wrong, that they are potentially harming people with this approach. Because, yes, one of the things I learned in that enlightening AMA was that normal therapy can actually worsen the issues when a mental health problem is trauma related. And I see that. I have sought help so many times and got nowhere and essentially come to the conclusion that it was just me. I can so easily see how someone else in a similar situation, who maybe didn’t have the same family support and love that I do, would see their failures in therapy as evidence that they are just broken beyond repair and decide to fix it by ending their life. I’m almost certain that has to have happened, because if I’ve had this problem then it’s almost certain others have too. That thought makes my chest hurt for real.

Obviously there are some huge flaws in the way mental health is handled. I already know that although they are the people you get referred to for help with autism things, many psychologists don’t know shit about autism. I don’t believe that autism/ADHD/neurodivergence should be classified with and managed by mental health professionals anyway, because it reinforces the idea that having one of those things is a flaw or a disorder, and I’m not certain that is really is because of the number of people that are affected. Being left-handed used to be a correctable flaw, then they realised it actually doesn’t affect anyone else at all and chilled the fuck out about it and learned a bit about how to make things easier for left-dominant people and all of a sudden there were gajillions more left-handed people. I think that maybe diverging neurotypes will come to be seen the same way in the future, that it’s not the people that are the problem, it’s society. But anyway. So psychologists don’t know stuff about autism unless they’ve made an intentional choice to go and learn, they don’t know about the proper way to treat basically anything except general anxiety and depression; but worst of all they don’t know that they don’t know. And in a healthcare provider, that is unacceptable. A GP is a good example of this – a fundamental part of their job and their training is to be able to identify when someone’s complaint is within the scope of their practice or whether it is something that is better dealt with a specialist in the area, and if that is the case they will refer the patient to the appropriate person. It seems like something similar needs to exist in psychology and mental health care so that the exact needs of the patient can be identified and they can be matched with someone who can actually help them rather than potentially causing more harm by applying the wrong approach to the therapy.

Seeing and understanding all this, knowing that mental health care was very deliberately excluded from Medicare and our public health system, it’s hardly any wonder why there is a crisis state existing now in the mental health care industry. Because fuck them crazy people from up here in our privileged perch. I’m sure that many actual scientists have understood that there is no real difference between mental health and physical health for a long time, but the stigma about having a mental health condition and the tendency to view it as a character flaw rather than a medical issue has prevented that information from becoming widely known. Mental health isn’t an entirely separate entity, it is a sub-category of healthcare, and I think most people understand that now but not necessarily that there’s no fundamental difference between it and conditions that have entirely physical symptoms. It is something malfunctioning in a part of your body, it just happens to be the part that controls your perception of self and self-expression, not the part that filters toxins or pumps blood or senses optical information.

Anyway. I am really hopeful that I can actually get somewhere this time. But also scared. Because my previous experiences tell me to not be too hopeful because it didn’t work all those times. Then there’s the worry about how much it will hurt to actually do this thing, the right kind of therapy for dealing with my issues. And wondering what and who to expect afterwards, assuming some level of success? I have been like this for so long that I find it hard to imagine functioning any other way. Like, I can imagine it, but it seems like a fantasy story where suspension of disbelief is an essential part of being able to enjoy the story. It is so different to anything else I have experienced that I actually do not know how to picture myself in a real life setting, just less burdened by these ghosts. I don’t want to make the mistake of aiming too high and imagining myself as suddenly being the most zen, laidback, unflappable person on the planet – lol, like that would ever be me – but I don’t know how much change and relief to expect or hope for in a realistic sense.

That’s enough rambling for today. Need to get dressed to go and get myself a mental health care plan so that I can start this new therapeutic adventure on Friday.

hope and fear

psych

jade, , , 4869 wordsLeave a comment

I have been thinking a bit about the last time I tried to get help from a mental health professional. We had gone to the Adult Mental Health place at Cleveland again and they asked me so many, many questions, hard ones – not hard because I didn’t know the answers but hard because sometimes to articulate something you have to feel it again and those are not nice feelings. It takes effort.

They make it seem like they care and are listening to you and taking notes so that they can help you. It seems like it’s getting to the end of this “please explain all of the ways you are broken so we can see if we can help you” and then they ask two more questions, so casually, like it’s an afterthought more for curiosity than anything else.

But in reality it’s your answer to those two questions that determine whether or they think you’re worth helping. If you say no, you aren’t thinking about harming yourself, and no, you aren’t thinking about harming anyone else.. then the assesment determines that there is little risk in returning you to society and telling you to get your help somewhere else.

Actually, that was wrong. As long as you’re not considering harming yourself or someone else, you are “fine.” I made the mistake one time (apparently) of saying that I did sometimes think about that, harming myself, and then got interrogated about what I planned to do. I said I wasn’t going to do anything. I think about it, in an academic sense, not in a scheduling sense. I think about lots of things I have no intention of doing. But apparently I’m the first person in the history of the world to ever think about hurting myself or ending things for science instead of for practise. For people meant to be helping and reassuring you that you’re not actually crazy, they certainly dropped the ball there.

My cynical part says it’s just because they need to be absolutely sure you aren’t going to leave and go on a killing spree, whether or yourself or others or both, because if that happened they’d be in big trouble. People don’t like it when they read in the news that a crazy person did something bad after trying to get help for being crazy and getting sent away.

So, anyway. They decide you’re not a harm risk and therefore there isn’t room for them to help you but they have this really helpful list of psychologists and if you go to your GP and ask for a Mental Health Care Plan, you can take that to one of these psychologists and you can have 5 sessions and it won’t cost you anything.

They believe that.

In reality, the list of psychologists hasn’t been updated in fuck knows how long, three quarters of them are no longer working at the practises listed, three eights of them are not accepting new patients at the moment or charge a huge fee on top of the MHCP.. and if you’re lucky you might find one who will give you an appointment.

Luck is relative.

Turns out, this psychologist is actually really retired, but was kind of bored, so decided to see people one day a week on MHCPs as a two-birds, one-stone way to pass some time and do a good deed as well.

I don’t know if the problem was me or if maybe this person hadn’t done any professional development in a very long time, and had some outdated information about how people work.

Because I tried to explain that because of my past experiences and things I was taught to believe about myself, I struggle with trying to overrule those thoughts.

I have irrational, fear based reactions when people I care about express irritation towards me, or in proximity to me – even when I’m relatively sure I haven’t done anything wrong – because whether or not I did something wrong isn’t really relevant in whether or not they might be angry at me…

I try so hard to squish it down, literally bite my tongue and hold my breath and use all of my brain power trying to make my eyes not give away that this is happening. Because I know it’s irrational and it’s not fair because the people it happens with now have never given me any reason to start fearing what is going to happen next. That it’s going to turn into several hours of just being berated and told, over and over, all of the ways in which I am just a poor imitation of a proper human being; selfish; abnormal; a disappointment. Don’t I think that if my mother knew how horrible I really was, she’d be heartbroken and disappointed? And I’m lucky that she is such a good person that it never even occurs to her that I am so bad. And of course the person telling me this isn’t going to tell her, and do that to her, because they are not like me.

More than twenty-five years, now, and every time he is a little bit snippy because he has a headache or he’s hangry or just because he is a human being and every fucking time I have to

there was a two day gap here, because I got too worked up trying to write it. let’s see if I can keep going.

Sometimes it is Daniel and occasionally it is one of our children. But every fucking time I feel that flood.. of something, in my chest. It’s probably cortisol and adrenaline coming out of my adrenal glands and I feel it first around my heart and lungs. I feel it starting and I desperately try to tell myself no, this is not that, you don’t need to do this, we don’t need those hormones and the shaking and the tears and the burning face. I tell myself it’s a minor irritation about a single thing which is really normal and it doesn’t mean they’re blaming me. I try to. But that nervous system reaction happens so quickly that it is beyond my control to stop. And the more I try to hold it at bay and the more I fail, the more guilty I feel for being broken and stupid and reacting that way to someone who has never hurt me like that.

Daniel obviously knows why this happens but I think sometimes he (and everyone else) doesn’t really understand how intense it is for me, how much effort I make inside to try to have it not happen and how little it can take sometimes to make it happen. When it happens sometimes he will ask me why I am crying, because he actually has no idea, because to him the exchange was of such little import and intensity that it has already passed from his mind. And most of the time he will remind me he was just irritated, but not at me and give me some tissues and give me a hug. Sometimes when I take a bit longer to calm down he says all sorts of things to try to distract me, to help break me out of it, to make me laugh, to make me feel less powerless.

“What do you call a one eyed dinosaur?”

“If I ever see her, I am going to fuck her up.” It’s the sentiment that counts, because I doubt he could even pick her from a line-up. Sometimes I wonder if I could, even, after all this time. In my dreams (should I call them nightmares? I kind of think of those as having non-human monsters,) I recognise her, of course, but it’s an odd kind of fuzzy older version of the face I remember.

“You just got to let things not bother you, like I do. Let it go in one ear and out the other.”

“What’s the difference between sand and period blood?”

And, I very much appreciate him doing this and it does help to break me out of this heightened state, but the thing is that the whole time he is trying to make me feel better, the broken part inside me is pushing back just as hard, telling me that I’m just still lucky that he hasn’t yet realised and understood that he has married a dud, that one day he will realise how stupid and useless I am, that maybe next time this happens it will be the time that he decides, fuck it, I don’t need to deal with being insulted like this all the time as if I’m doing something wrong when I’m not. Or sometimes, just for a bit of variety, that he already knows all of that and he is just here because he is a good person, not like me, and he feels sorry for me and how pathetic I am so he puts up with me because he is a good and a kind person, not because he actually loves me because of course he doesn’t because what is there to love?

I think sometimes that is why my mind is so active, has so many threads going at once.. because it needs to, in order to make more noise than the broken part in the subconscious that keeps sending out those thoughts that do their best to convince me that I am the person that someone I was supposed to be able to trust, a long time ago, told me I was.

The trust part is the part that made the difference. I can remember kids being mean to me at school, really fucking cruel sometimes even, and it upset me but it hasn’t left parts of my mind broken and brainwashed into believing that what they said about me was true. Because they didn’t have authority, they didn’t have a position of trust. And also, it was a lot less intense. Lunch time ended, school ended, and it might happen again on a different day but there was just as much chance that they would be mean to someone else that day or have forgotten they ever said anything nasty to me. She always disclaimed herself by saying, “I’m not your parent, I’m not anything, I’m nobody, I just live here.” And I’m intelligent enough to recognise that those words contain part of the story about why all of this happened. To everyone else outside of our home, she wasn’t my parent, she was just some person that happened to live with my mother and I; perhaps they realised that it was roommates and not just roommates, perhaps not. But I accepted her as my parent almost immediately and now in reflection I don’t think she knew what to do with that. I’m fairly sure she never had a child in her life plan, and even when she met a woman who had one it was ok because the child lived with her father and they’d only have to deal with her every two weeks and sometimes in school holidays. Then the child’s father had the selfish audacity to die (fucking MEN amirite /s) and everything was fucked. I assume she told herself, and maybe even believed, that she could tolerate me if it meant getting to keep my mother. I think at first I was a novelty. I was probably the perfect age for being tolerable without being difficult. Past the messy baby and toddler stage, able to do shit by myself some of the time and reasonably agreeable. Wasn’t until a few years later that I got a bit older and became more of my own person with my own ideas and personality that I became a problem. I’m fairly sure she had two very rigid ideas about who and what a young girl could be: she could either be a proper little girl who did little girl things like sewing and cooking and was ready to grow up and be a good wife and mother; or she could be an active, sociable, sporty tomboy who pushed all the rules to stay out late doing undignified unladylike activities but ultimately knew she would still have to be a secretary one day. I was not either of those, because it was the 1980s not the 1950s and people were a lot less uptight about gender roles, and I think that is what led to her forming the opinion that I was flawed as a person, because I wasn’t the perfect little girl she had not been, nor was I a reckless rule breaker disappointing and scandalising adults everywhere. I don’t think she had any other template for what to expect from me so logically it made sense that I was broken, and as an adult in my proximity but who was certainly not my parent, it was her responsibility to tell me just how very wrong I was. Whether or not it was supposed to make me change who I was so that I was not a misfit or just supposed to make me feel terrible about being one, I’m not sure. Maybe a bit of both.

An oddly funny thing is, I’m actually very much like my mother. Someone she supposedly loved so much she wanted to spend her life with her. Just about every thing she ever criticised about me is a trait or interest I share with my mother. I don’t know why it was good on her, but a mistake on me.

The insidious part of what she did was the part where she convinced me that I was so fucking fortunate that none of the other people in my life had yet realised that I was a badly formed, pathetic excuse for a human. That’s the part that made me ashamed of myself and ashamed that she “had” to point all this out to me and ensured that I would never actually properly express to anyone the extent of how absolutely cruel to me she was. A lot of people knew that there was friction sometimes, disagreements or differences of opinion. Even my mum. But I never wanted to tell anyone just how big it all was because to do that would mean having to reveal the extent of how bad of a person I was, and I desperately didn’t want people to realise that and abandon me because of it.

The fact that I had accepted her into a parental role, and I know she knew that despite what she said out loud, meant that I trusted and believed her when she told me those things.

And children are programmed, wired, primed, however you want to describe it, to trust and believe the people that they rely on to meet their needs. Even when they are also doing unimaginable amounts of damage to your developing mind, sense of self, sense of worth. It has caused a whole bunch of my neurons to be programmed to repeat that message to myself, so that I don’t ever forget it, even when the person who put that programming in place has been absent from my life for longer than she was ever in it. ‘Cause that’s how brains work, and most especially children’s brains. “Learning sponges” that soak up whatever they are taught, regardless of whether or not it is actually good for you or correct.

So that brings me back to this last psychologist I saw a few years back. I had managed to express some measure of what my issues were, that I had these overly intense and inappropriate reactions to what should be innocuous interactions, and I don’t want to. I want to find a way to make that stop happening. Because it fucking sucks, and it is painful to me and sometimes even to those around me who have to wonder why I am reacting that way when they didn’t do anything worthy of it.

And this guy said to me, “but if you know it’s irrational and incorrect, then it’s not really a problem, is it? You just tell yourself that and the fact of you knowing intellectually that it is wrong overcomes the issue.”

And I was like, “Um, no it fucking doesn’t.” And it didn’t seem possible to make him understand that simply knowing the reason for my reactions and knowing that it’s not normal isn’t enough. It really made me question whether he was the idiot or I am; because apparently he has professional qualifications and education on how to help people with this stuff and he was absolutely certain that simply knowing the problem exists and is abnormal is equivalent to having solved it.

But I think to myself, someone having blackouts or seizures or something like that doesn’t go to the doctor and explain all their symptoms for the doctor to say, “Good news! It’s just epilepsy. You can stop worrying now,” with absolutely no other treatment, medication, warnings about things that could be dangerous, etc. No, of course not. People try to reduce the chance they will have episodes like that as well as making sure they can be as safe as possible when they do still happen. They don’t just start to feel their consciousness fading while cooking at the stove and think to themselves, “Oh, it’s just that pesky POTS,” and stay completely still and collapse over onto the hot burning stove because as long as you know what’s happening it’s all fucking fine.

Would be nice if I could get a dog who would tell me when I was about to have an existential crisis and help me prevent it from happening. Of course that would require the dog to be actually precognitive instead of just having senses far superior to our own.

I want to be able to hear people express something negative, which is completely normal for people to do, and not automatically assume that it’s my fault and start that frantic internal process of trying to pretend it isn’t happening and stopping it from happening at the same time. By the time I get the chance to try to logic myself out of it, it’s way too fucking late. That faulty neural and limbic avalanche has already started and there isn’t any logic or intellect in the world that can neutralise all of those chemical and electrical signals until they’re just spent. It is painful and exhausting. I want to teach my brain and my body to not do that, not just ineffectually tell myself afterwards that everything will be ok.

I want to be a person who feels ok about myself more often than I don’t, rather than one whose default mode of existence is believing that I suck and one who has to exert constant effort to ignore and counter that inner voice. I want to be a person who is occasionally insecure rather than a person who is occasionally sort of not entirely unconfident. I don’t want being conscious to mean I am in a constant battle to anti-brainwash myself, which clearly doesn’t work anyway.

I don’t want every good or nice thing that Daniel does that would make Green Flag Guy get excited to make a mean voice in the low, dark part of my mind to say, “Don’t get used to it. Ever. It doesn’t matter how long it takes. One day he WILL realise you don’t deserve him.” I don’t want to have to argue back every time I feel proud or impressed with something one of our children does and it says “that’s nothing to do with you, that’s in spite of you. All the times you felt like you weren’t good enough of a parent, you were right. They’re just lucky they had another parent who isn’t a disaster.”

I don’t want to feel guilty every time I feel pain or exhaustion and hear the inner voice say “see!? Everything about you is badly designed and malfunctioning. You are a bad person, in a bad body, with a bad mind.” Though that is the one nastiness from the broken part of me that I feel like I am sort of able to semi-successfully rebut. Because there’s lots of studies and evidence to suggest that a big part of the reason bodies don’t work well is due to the stresses and trauma of the past. There’s even a checklist to see how many Bad Shit you have experienced in your childhood and how much risk that puts you at for experiencing other Bad Shit as an adult. (Adverse Childhood Experiences.)

I want to make that horrible voice be silent, not just constantly try to refute what it says, with varying levels of success.

Supposedly it is possible to recover from the effects of abuse and learn to be normal again. I just don’t know how to do it on my own.  And that’s why I’ve asked for help, so many fucking times by now. But the constant agony of living inside a mind convinced that you are a terrible, horrible, pathetic failure of a person isn’t enough to make me worth any of the help the public health system is able to give, because their measure of success is “physically alive and likely to remain that way.” And the private mental health system is not any better; there is SO much demand and so little availability and the costs of that kind of treatment are considerable. Especially if you are the kind of fucked up where it’s obviously going to take a shitton on sessions to get anywhere.. if you even find someone that is able to help you and doesn’t just try to convince you that understanding the reasoning and the background behind your mental health woes is the same as curing them.

So that’s why I have accepted, a long time ago, that I’m probably going to need to take medication for the rest of my life to keep me at this level, that while it isn’t optimal, is just vaguely manageable. And I honestly don’t have a problem with it if I do need medication, I’m not anti-drug in the slightest. It does bother me that I just have to settle for this place right here with little likely chance of ever being able to explore whether or not my mind can actually be healed at all.

Medications rarely only do the thing you want them to do and nothing else, though.

Stephanie suggested to me a while back that maybe it was the anti-depressant medication affecting my sleep, because she noticed her sleep go a bit shit when she first started taking it too. But when I first started taking it, it actually made me crazily sleepy, so much so that I had to move to taking it at night instead of in the morning. And that way the sleepiness hit when I actually wanted to be sleepy.

Then I had the sleep test in February and the doctor was like, see, you totally do have sleep apnoea except a barely there form of it that is hard to detect. Do a CPAP, it will definitely fix you.

As I previously established, that has not been the case, and because I want fucking answers and to go to sleep and wake up feeling refreshed, which I understand as a concept but actually truly cannot remember what it feels like anymore, I have been doing so much research and looking over the sleep tests and looking over the data produced by the CPAP machine each night and just trying to find anything that might explain why it wasn’t doing what it was supposed to and how to fix that.

Finally, I noticed a small detail on both of my sleep tests, both the 2018 and 2025 one. Each of them recorded a lot more arousals than respiratory irregularities. So that suggested to me that the respiratory stuff, the “very slight” reduction in air flow as the sleep doctor described it, is not the main cause for me flitting between sleep stages like a directionless butterfly, because more than half of the arousals apparently happen when my air flow is just fucking fine.

So if it wasn’t the breathing, what is it? That bought us back to the medication, and I looked up the research and well, there’s a fucking lot of it that says that in some people venlafaxine heavily interferes with acquisition of both Stage 3 and REM sleep states. My test in February didn’t detect me ever entering either of those states, it was just a constant bounce between S1 and S2. My 2018 test did detect some S3 and REM but much less of them than there should be and more of the other two than there should be. So it appeared that both of the tests support the theory that the medication is what is fucking with my sleep, and it was bad 7 years ago and has been progressively getting worse..

It’s not like I never told anyone what medications I take. I am honestly incredulous that all of these doctors, sleep specialists and GPs alike, had that information right in front of them, as well as extensive data on how damaging venlafaxine can be to sleep quality and none of them ever thought “hmm, that’s something we should look into.” I LITERALLY HAD TO BUILD MY OWN COMPETENT PERSON TO FIGURE THIS OUT, and she hasn’t even had a fraction of all the magnificent education they supposedly have. Perhaps there is something to be said for that adage about wanting something done right.

That brings me to why I have made a huge and difficult effort to go into a level of depth I don’t think I ever have before about what the inside of my mind is like. This is what I am like, damaged, but at the best I have managed to be with both the counselling I have had in the past (and sometimes in spite of it) and the medication. But if I continue on this path of extreme sleep deprivation I will lose all ability to function and it will probably eventually kill me. Not next week, it could still be another 10 years, I don’t know, it’s hard to find concrete data on the long term effects of sleep deprivation which I think I mentioned before, but I have been able to feel that it was a real possibility that it was becoming a direct threat to my health, not just a melodramatic “oh I’m so tired I could die.” That is actually terrifying because sleeping is meant to be the easiest thing in the world and to not be able to do it properly and know that it is affecting you more and more is .. scary. Proper horror movie scary.

I need to try to start reducing the amount of venlafaxine that I take. Unfortunately, venlafaxine is somewhat well known for having a fucking shit show of discontinuation symptoms, even among other similar anti-depressants. I have even had some of them myself one of the times we sought help and the guy said that if I reduced my dose we could add in another medication so the combination of them would work better and then after I spent a month in misery with a constant headache and nausea he said actually, yeah, nah, I think you should just have some vitamins instead. So I’m doing this but doing it really slowly. I’ve been on 300mg, the lowest size the pills come in are 37.5mg, so I’m going to reduce by that much and try maybe a month at a time, to hopefully avoid symptoms and give my mind time to adjust and hopefully not slip back into the abyss. I say that somewhat casually but it is a real concern. I don’t want to go back there, where I was unable to keep a lid on all of the negative thoughts. My hope, for a best outcome, is that I manage to slowly taper at this rate so that I’m only on 150mg instead of 300 and that is enough to restore my ability to sleep without being too much that it erodes my ability to stay out of Tartarus. In reality I have no idea how this is going to go. There’s a reasonable chance that I am going to start falling back in there. And in the absence of proper psycho treatment of some variety, I am hoping that by having taken the time to lay out the full detail of the dark nooks and crannies of my mind, and then asking them to read it.. and then hopefully no one proving the cranny-voices right.. I will have a better position inside myself to fight back from. If I have intentionally made all of the people I care about aware of all of the broken pieces in my mind then the fear of them one day realising shouldn’t be something that can harm me anymore. Maybe. Eventually.

I am throwing myself at the ground and I really, really hope I manage to miss it.

psych

deflate

jade, , , , , 2456 wordsLeave a comment

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

under pressure

jade, , 1746 wordsLeave a comment

A while back I watched a movie. I think my mum downloaded it and gave it to me but it might have been me that downloaded it. It is called It’s Kind of a Funny Story. IMDb’s tiny description says “A clinically depressed teenager gets a new start after he checks himself into an adult psychiatric ward”.

It may come as a complete shock to anyone reading this, but.. I really related to the movie. Like the kid in the movie there’s nothing especially wrong with me or my life.. it’s just not right. I think that is sometimes part of the problem in trying to express yourself and help other people to understand you – you can’t tell them what is wrong because there’s no specific thing you can say that explains why you feel the way you do. And in the absence of being able to name specific reasons why you might be depressed or anxious or paranoid, anyone who hasn’t experienced it themselves or maybe with someone very close to them just can’t make the connections to understand how it really works. Maybe it’s vaguely comparable to the loss of a sense: colours and lights and sounds are still always there, in the world, but a blind or deaf person’s ability to interpret and respond to those stimuli is different than fully sighted or hearing people. Everything in my world is essentially the same as in anyone else’s world, but my ability to process and have the right reactions to things is impaired. And just like blind or deaf people have adaptations in their personal environment or habits that enable them to operate in the world even though it’s not designed to be easy for them, so do I do certain things differently to try to make it as easy and painless as possible for myself to continue to live a fairly normal existence. But no matter how good your guide dog is or what kind of changes you make, it still doesn’t change the basic problem that you can’t see. No matter how good your drugs are or your shrink or counsellor.. it doesn’t change the fact that underneath all of that, your brain does not always have the ‘right’ responses to various events.

So I think part of what I liked about the movie was that it showed other people struggling with things like I do. Not all necessarily with the same problems as me but people who had problems that are not easily explained like ‘I fell out of a tree and now I can’t walk’ or ‘I am blind’ where even if people don’t necessarily know how it feels to live with that, they do at least have some understanding as to how it affects you and how they can adjust their own interactions with you to make it easier. Someone might hold the door to assist when they see a person in a wheelchair coming, because it’s obviously awkward to try to open the door and operate the wheelchair at the same time. But when the problem is in the way you think and feel, it’s not as simple to say When you talk to me, it makes me feel hot and I get sweaty and there’s a pain near my heart and I feel like the inside of me is vibrating like a seismograph needle during a magnitude 8 earthquake, yeah, really, even though looking at the outside of me I appear perfectly still which is so strange when the rest is shaking and rattling that much, and all of those things make it hard for me to have clear and focused thoughts about the interaction you have initiated and what I am trying to do right now, and that makes me wonder if my mumbled or short or stilted answers make you think that I’m drunk or drugged or crazy or unfriendly or stupid or snobbish or maybe something else entirely and then that makes me feel bad because I am not trying to be rude or standoffish, and sad because I’m not unfriendly or impaired by alcohol or pharmaceuticals, and annoyed because it’s not fair of you to think that I am drunk/drugged/crazy/unfriendly/stupid/snobbish/other when it was your fault in the first place that I started feeling … this. And then so very sad again because I realise that it’s not really your fault, because talking to people is what (most) people do and you don’t realise that it makes me feel like that.. because the problem is my reactions, not your stimulus.

When I have a string of bad days where that feeling is there more than it’s not, it becomes harder and harder to stay hopeful and cognisant that it will pass and I will feel better. It’s a type of exponential slope, and the further I slide down, the steeper the ground I have to climb to get back to the top. Or near the top, because I don’t ever really get to the top. Occasionally, I leap high and fly for a few minutes, gliding far above the ground hand in hand with my love and from up there everything looks so small and it becomes hard to understand and remember how I am always pushing, pushing in an uphill direction when I am on the ground – partly because from that far up you can barely even tell that the ground is inclined.

Having flown, I gain more energy to climb further, I get closer to the magical top of the mountain. For a while, it is easier to keep hold of the terribly steep ground that it is so easy to slip downwards on. I remember that I can get past bad days and I can be hopeful and I feel that maybe I am not actually a terrible mother and wife and daughter and person. Being hopeful and believing that I can keep going through to something better is one of the most important things I need to have. It’s quite cruel that the miswired parts in my mind that make me feel the bad things also rob me of the ability to maintain that hopeful belief. When I have a cold I know that I’ll be better in a few days or a week. When I have a Bad Head Day I feel like I will never ever have a Good Head Day again and the Bad Head Days are so black and gloomy and terrible that I might as well not even bother having them either.

The people in the psych ward in the movie all know that each of them is there because for some reason they can’t quite deal with the outside the way people are supposed to be able to. And because they know that other people are climbing the same mountain, fighting the same battles, they’re able to be empathetic without being pitying, supportive without having to understand. The mere knowledge that other people struggle and other people try gives them more hope and more energy to push off their fears and doubts that are holding them back.

This scene, where they are having some kind of group therapy which involves music, is so representative of that thought to me. They can’t really play instruments, they can’t really sing like Freddie Mercury and David Bowie, but knowing that everyone has doubts and fears equalises them and lets them just do it. It lets them dream that they are the best, most confident, talented, unafraid, outgoing versions of themselves. And the song that they’re singing has some very thoughtful lyrics. I have always liked Queen, but after I watched this movie, Under Pressure has become one of my favourite of their songs because it reminds me of this scene and this HOPE and that I’m not the only one who must climb uphill all the time.

Pressure pushing down on me
Pressing down on you no man ask for
It may push down on me but it’s not only me. And no one wants to feel this way, but generally, people do keep fighting.

It’s the terror of knowing
What the world is about
Sometimes one of the worst things is knowing that I’m not supposed to feel how I do. Knowing that so many seemingly simple tasks really are simple for lots of people and don’t cause them to feel scared, worried, panicked, unworthy, inadequate. So then: why me?

Chippin’ around – kick my brains around the floor
These are the days it never rains but it pours
Bad Head Days are like rain. Lots of Bad Head Days in a row are like .. summer in Queensland where it pours, continuously. And there’s no break and the water threatens to flood and there’s a serious risk of drowning.

Pray tomorrow – gets me higher high high
Remember that hope. Remember that tomorrow I will be higher up the mountain and the flood waters will be receding.

Insanity laughs under pressure we’re cracking
It never really makes sense. Why do I have to keep climbing and falling, climbing and falling, the same struggles over and over again. Can’t I just climb up and stay up? If I’m just going to fall down again, why bother climbing up?

Can’t we give ourselves one more chance
Why can’t we give love that one more chance

And loves dares you to change our way of
Caring about ourselves
This is our last dance
This is our last dance
This is ourselves
You bother because.. maybe this time I will stay up without falling back down. Because I’ll never get the chance for that if I don’t try. Because there are people who care about me who have invested time and effort and love in helping me to get up and stay up and I don’t want to be undeserving of that. Because I’ve had glimpses of what it might be like to live at the top all the time and not reaching out for that would be much worse than getting there for a bit and then slipping down again. Because time is not infinite and as long as I keep trying I will keep having Good Head Days that make it worthwhile. Because this is the only life I get, and that’s such an amazing gift that I am obligated to myself to try to live it as happily as I can.

under pressure

iPad

jade198 wordsLeave a comment

note added 21 Jun 2025: partial entry found in drafts and published as is.

Have you seen the iPad? Sexy embodied! I wonder how long it will be before it’s available in Australia. And how much it will cost..

I fell of the wagon a bit. With the updating. The mental state has been.. steadyish. Up and down, but there are more good days than bad days. Though the bad days really do suck incredibly. I haven’t been back to the doctor yet because I felt the need to have a bit of a break from it. The last couple of weeks of holidays, the last episode of chemo, planning for the radiation, getting ready for the new school year.. I decided to put being crazy on the back burner.

I got somewhat annoyed at the doctor I saw at the hospital too, because I felt like he didn’t really do much of use. All he did was make me take less medicine than I had been taking with the promise of introducing something else that would be able to help me more and then instead he tells me to take some goddamn vitamins like he’s advertising scientology or something.

iPad