thursday

i learned some new words a few days ago. it seems there actually is a term to describe the feeling of not really wanting to keep living but not necessarily wanting to be dead. it’s called “passive suicidal ideation.” as opposed to active, where you, you know.. want to kill yourself.

the thing about it is.. what appeals is not the state of being dead. the fantasy is about the state of not being in pain, not having to struggle so much, not feeling like a burden, not feeling pathetically weak, not feeling like you are failing at something that is supposed to be easy. not hating yourself. not waking up in the morning (or the middle of the night) and wondering how you will get through the day.

i’m struggling with this a lot right now. apparently the doctor i spent several months seeing and trying all those treatments with is not good enough for the purposes of confirming that i have a condition that makes my life miserable and painful. it has to be a specialist. like a rheumatologist. who declined the referral i had because they didn’t think there was any additional useful treatment to offer me. i don’t know how it is even possible for doctors in the public health system to refuse to see you. like, if you’re getting referred to them and willing to wait however long it takes to see the, it’s not for fun. it’s because it’s the only option you have.

i know that they want me to give up and that this is how they convince themselves that people are asking for the dsp when they don’t really need it.. by making it so fucking difficult and kicking you so many times that you simply don’t have the energy or money to keep trying. knowing that doesn’t really help, though, does it? the requirements for evidence are designed in such a way that it’s almost impossible to meet them. because it has to be all about how it impacts you in your everyday life. so you explain that to them. how you sit down to put washing in the washing machine. how you take breaks every 5 to 10 minutes to stop your body from protesting at the being in one position for too long. how some days it hurts to move the bar of soap across your arms and legs in the shower. how some days it even fucking hurts to fuck. oh.. but none of that is relevant. because that information has not come from a suitably qualified medical professional. but how can a medical professional tell them about the ways that it impacts my life when they are not the ones living my life? literally all they can do is repeat exactly what i tell them.

lots of times i just feel nauseous. i don’t know how to find my way out of this darkness, i feel the weight of it every time i make a mistake or forget something or do the wrong thing because i am so fucking tired. i ask the kids a question and i know that i asked it and that they answered but the answer just disappears from my brain and i need to ask it again. and that annoys them. i start to feel like i am having a good day and getting things done in a reasonably ok way and then i realise that i’ve just completely forgotten something else that was important. and all of the other things go to shit. because i used to be able to manage everything and keep track of everything i had to and it was effortless.

and when there is a piece of paper sitting on my desk saying that “we have decided that that you are not eligible to receive the disability support pension,” what it also says to me is that you are a fraud and you are weak and you should be able to cope with the shit you claim is wrong with you because anyone else could. and i wonder: am i weak? am i not trying enough? and if i’m not, where on earth can i possibly find the energy to try harder? i am already pushing myself to being so exhausted that if i sit and let my mind relax for a few minutes i am falling asleep. i am already doing things despite them causing me pain. and if this isn’t good enough and i should be doing more.. then where does that more come from?

thursday

not thinking

It is kind of like when you are trying to go to sleep it becomes really hard or even impossible to actually go to sleep. Trying to not think about something is an incredibly difficult task. Luckily I have somewhat figured the trick is to come up with other things to occupy my mind and focus on those rather than trying to not focus on all the things that make me feel weak, pathetic, panicked, picked on and terrified.

It’s really fucking hard right now. We have been struggling, just keeping up for a long time. And that is part of the reason we decided to apply for the DSP again. Because it’s not my choice to live like this. To hold the windowsill for support to get up out of my bed. To stand first thing in the morning making lunch for Daniel and feel pain with every thing I reach or bend to get, each step I take across the kitchen. To stop to talk to him for a moment while he is in the bathroom getting ready and have all the muscles in my torso suddenly spasm, causing me to grab at the door frame to stop myself from falling.

And yet.

It’s 8 or 9 months since we started the application and every time I am doing something and feel exhausted or feel pain I hear the words in my head that it said on the first letter we got from them: “there is insufficient evidence that this is impacting you in a serious way.” And it makes you hate yourself and doubt yourself and feel so weak. Because when you’re at what feels like rock bottom and you beg for some fucking help and instead of compassion they say, “but are you REALLY? Please prove that you really do deserve some help and show that you have done everything possible to try to not need the help.. and then we will think about it.” How can you not start to feel like the problem is you? When a certain state of being becomes normal and constant for you it takes active effort to keep reminding yourself that it’s NOT actually normal for people to have to do the dishes in ten separate small batches because it starts to hurt if you stand there too long. It’s not actually normal for people to vacuum half a room and then need to sit for a bit because of the shooting pains in your hips and legs. It’s not actually normal for people’s backs to start to burn with cold, prickling pain when trying to fold up clean clothes. But knowing all that and having provided all of that information and having supporting letters and stuff from the doctors listing all of the things you tried taking to try and making it better – some of which literally made you gag to try to swallow – and waiting all this time with no response. Maybe it is me. Maybe I don’t deserve help or compassion. Maybe I’m not trying hard enough.

But I don’t know where to find the energy to try any harder. I already push myself so hard, push to exhaustion and push to make myself do things even though I know it will hurt and push to not let the tears come when I feel so, so tired and sore and there is still more to do.

Just to keep things interesting, since Stephanie completed year 12 our Family Tax Benefit was reduced by $263 a fortnight. Obviously we missed the memo that the government is privy to about how to make kids become free to feed and clothe and educate once they finish high school. Oh, but wait.. she applied for Youth Allowance as a student and that told her that she’d be assessed according to her parent’s income because she is under 18 and people are considered to be dependent on their parents until they are 22. Such logic. And in the meantime we are trying to figure out how to spend $530 less each month when we were already having trouble managing everything.

How do you not feel guilty about the glaring reality that you are the one who is not making a financial contribution to the family – in fact your inability to do things actually COSTS more money – and not start to believe that you are a burden and you are a terrible wife and terrible mother. Because if you were stronger and better at pushing through the pain you’d just suck it up and get a job.

Except the thing is, I know what happens when I push past what I can handle. For several days I am in blinding, nauseating pain and I can’t even take anything for it because the only medicine I have that makes even a little difference means I cannot drive or even think clearly sometimes and people need taking to school and appointments and if I stay resting and not moving for the rest of the time I can just about manage the half hour or hour it takes to do those things that must be done and get back home before I am hot and I am cold and I am sweating and I am trembling and I feel like I really might actually vomit and I need to get back to my bed so that I can let go of the huge force of mental effort that is needed to keep my mind focused and present when all it wants to do is just let go.

It is quite possible that I shouldn’t be doing things when I am that bad, but if I don’t do it, who else is going to? Where is the sweet spot between not neglecting your children’s needs and not doing things that are potentially dangerous in trying to meet those needs?

not thinking

more

Sometimes when I want to write an entry I start thinking about what has been in my head for the day and it seems like it is more of the same crazy and that becomes frustrating because I don’t want to be forever crazy. Sometimes I start to think that things are getting better and then I have a whole lot of Bad Head Days in a row and I’m floundering and wondering if I will ever find a way to be what I should be.

A Bad Head Day is kind of like a Bad Hair Day. Despite best efforts it is just so hard to make my thoughts and feelings not blow away and be a knotted mess. They squeeze at my throat and my chest and push heavily on the top of my tummy and make me feel so inadequate, useless, unable to be and do all the things I wish I could. Sometimes for me but mostly for Daniel or the kids. The problem is also that the two aspects of my illness feed into each other. Things make me anxious, scared, terrified and because of that fear I can’t just go about life like a normal person. Then my inability to be a normal person makes me feel depressed. Then I feel more worried that struggling with those feelings, I will be someone unfamiliar that Daniel or the children or my mum does not want to have to deal with. Then I feel more depressed at the thought of not being wanted or needed. Then it’s a fifty-fifty between whether I will be filled with fight or filled with the sense that I should just give up and let them be free from the burden of me. Or sometimes it is both because even when I feel the second way I hate that for them to be free of me, I would be free of them, and that would be worse than anything.

So anyway. Sometimes I don’t want to write the same things and I’d imagine that nobody really wants to read the same depressing shit all the time either. But I think my mum might be the only person who really reads this anyway and it’s not like anyone else is actually being forced to read it. And I feel that way about telling people or telling Daniel that I am having a bad moment or a bad week or a bad whatever. I know he already knows that I am crazy but him knowing and me calling attention to it are two different things. I don’t want to be his broken wife. I want to be his awesome wife. I don’t want him to work hard at his job all day and then have to deal with my failings when he comes home. I look forward to him getting home because I feel better when he is there and I can talk to him or do things with him or watch something with him or even just do something by myself while he is doing something else but sitting next to me. And I want him to be able to look forward to coming home for the same things. Talking about all the things I worry about and all the ways in which I feel pathetic and unworthy of being his wife and our children’s mother is not really fun times.

I didn’t realise when I was younger just how hard it could be to live in the world like this sometimes. I’ve always felt this way, inadequate, less, wrong. But it only affected me before. If something was too hard then it was ok to not do it. There was nothing I wanted to do so much that it was worth the internal seasick tornado to do it. Well, there was one thing. And I managed that mainly because the thought of not taking that chance and missing out on how amazing it would be with Daniel was more terrifying than the thought of doing it. But now when I have other people who rely on me I don’t want to disappoint them. I don’t want to say no. Everytime they need something I feel unable to give it is a choice between making them angry or disappointed or somehow trying to do it and feeling the anxiety, the shivering self-consciousness, the fucking uselessness and trying to not let that show and keep it under control enough that I don’t need to spend an extended period hiding in a dark place afterwards. Sometimes I risk the angry people (and some of my family members have quite prodigious tempers) but usually it is the second option. Being Atlas. Wondering if one day it will be too heavy.

more

just dumping

hello

i’m feeling a little… tight in the chest this morning. anxious, i guess. scared. hopeless. the usual.

i don’t know if it’s me… actually, it is me, but what i mean is i don’t know if it’s part of me inherently or if it’s behaviour that was conditioned into me after years of being told and shown when i was young.. that everything i do is wrong and everything wrong is my fault. and i do try really hard to remind myself that it isn’t true but sometimes the devil voice is a bit louder than the angel voice. and that’s when i feel a desperate need for your voice.. your actions that are louder than words, louder than all the other voices. your hands and your lips and your other parts, telling me with every touch and every groan that i’m not wrong and that i am worthy. and i can believe you because i trust you and i believe, inside me, deeper than the parts of me that are affected by the bumps and challenges of life and the complexities of neurotransmitters and hormones.. i believe that you could only touch me and love me like you do if i was something wonderful. and because you do touch me and love me i believe it, a little bit. enough to smooth over those bumps and balance the chemicals in my brain and my body, for a while, at least.

sometimes. or maybe a lot of times.. i am my own worst enemy. or maybe all the times. because what is wrong with me is what makes it so very hard to ask for what i need. on a good day, i can do that.. show you, tell you, that i want – need – to be joined to you, to show you that i think you’re amazing and beautiful and strong and brave and gentle and loving and hope that you feel that and know it, and know that i will feel that back from you. and that helps to keep me having more good days, it keeps me steady and i take less steps backwards than i do forwards. but on a bad day, when i have struggled and fought with my own mind about doing the things i must do, when i am tired at the end of a day and so exhausted from the battle.. when i most need you to hold me and remind and reassure me that you are with me, part of me, always ready to catch me if i stumble.. i have no energy left to tell you that i am stumbling.

i didnt actually mean for this to be depressing. i wanted you to know that.. that while i am having a bad head day, i keep trying because of you. because i want to be better for you, because you show me that i am worth it. and i am so grateful and thankful for you, even when i really don’t understand sometimes how you can put up with a person as flawed and broken as me. i hope that when i am the real me, not pulled down by my demons; when i am silly and hippy and witty and flirty and optimistic and naive.. i hope that i show you strongly and loudly enough how much i love you and how happy i am to share my life with you. how important you are. my air, my water, my sunlight, my daniel.

i love you.
jeg elsker dig.

just dumping

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