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.


under pressure

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