thursday

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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

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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

seventeen

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It is hard to believe that in just another 365 days, I will be the parent of an adult child. I wouldn’t say that I don’t feel like an adult, but I don’t feel like an adult of long enough standing to have grown my own from scratch.

Of course the adult bit is kind of relative, next year she will legally be an adult but for all intensive purposes*, she is one already at 17. She still asks me things all the time but her questions are not (normally) the annoying, unanswerable, existential-rhetorical type stuff that younger children ask and yet still expect you to be able to answer. Her curiosity for information is fun, because we can discuss interesting things like the four pronged nature of an echidna’s penis and then look up pictures of these fascinating things together.

I have spent a lot of time with her over the last couple of years, more than I would have if she hadn’t inherited the clumsy genes and managed to slip over in a tiny shower and set off a health adventure of huge proportions. While I would never be glad that she’s had to deal with all that she has, I am aware that it provided opportunity for developing closeness between us that probably would not have happened otherwise.

She’s changed greatly over the course of this adventure. A certain amount of maturing is of course pretty normal, but I think that she has a maturity and appreciation of certain aspects of life far beyond that of her same-age peers because of how she’s struggled and learned to thrive despite the pain. In trying to help her do this I have also had to reach deeply and share some of the darker parts of myself that I don’t usually like to put on display, so that we could connect and move forward. I think that in some ways she has also seen parts of my struggle that Daniel and my mum don’t always see, the moments when I am home by myself and feeling like everything is so very heavy and I am not strong enough. And it has been beneficial to both of us. I have had more practice than she has at keeping going when things are hard and so she has seen that you can keep going and be happy even with shit circumstances going on. Wanting to continue to set that example for her has in turn given me an extra push on hard days to be the best and do the best that I can when I really would rather lay down and give up.

It turns out that we have a lot of things in common. There’s a lot of overlap in our senses of humour. I do share that with my mother to a degree as well but I think that there are times when she likes a more mature (mature as in less puerile, not as in adult in nature) humour and there’s a lot of the silly stuff that Stephanie and I both appreciate that might not tickle my mum. Like me she takes great amusement in the brand of Australia themed humour and the exaggerated Aussie stereotype of Australian culture: the casual, self- and mate-deprecating person who rides kangaroos and wrangles Drop Bears and says “cunt” a lot.

Sometimes when my mum is telling people about me she gets this look on her face when she is talking about something cool I have done or whatever. And I am a bit embarrassed because what she is describing does not feel like it is on the same level of me as a person. Like.. yes, I’m a nice person and I try to do good things, but I’m not a fucking saint or whatever. But now I kind of understand that look because it is how I feel like I must look when I am thinking or talking about Stephanie and how proud I am that I had something to do with who she is. Not that this means I am not proud of my other children, because I am.. it’s just different. While I think that ideally all people should remain in a “work of progress” type of state, even as adults, it’s different in that at a certain point it becomes more about improvement and refinement of the already established base. Stephanie is a complete person who knows what she likes and what she believes in and I think she’s pretty great. She welcomes my input and my opinions because she wants them, not because she is obligated because I am her parent. (Perhaps I just appreciate this because with the other two it is still often a matter of “ugh, you’re old and uncool and I don’t need your opinion or the benefit of lessons you have learned.”) The cool kid likes me!

• I did that on purpose. She likes memes and dislikes when people don’t know how to word properly, so I think she will appreciate this fine humour.

seventeen