twenty

Last week.. actually it’s almost two weeks now.. we had our twentieth wedding anniversary. This makes me happy. Of course.

Sometimes people say it’s something to feel proud of. Making a relationship work for that long and still missing each other during the day and still wanting to fuck and stuff like that. They’re like, you must have worked hard to do that. And I’m like.. well… no.

It’s easy.

Being married to Daniel is the easiest thing in the world. Being happy with him, wanting to make him happy, wanting it so much that it is easy to put aside other things I might want is not something that takes an effort to do. Making him happy makes me happy. When people talk about having to work to achieve this, it doesn’t seem like how my life is. Aren’t the “other things” meant to fade away when compared to your spouse’s wants and needs? If they don’t come first and you have to force it, why persist with the relationship? Is this part of the reason why so many places have such high rates of separation and divorce?

It isn’t that we never disagree about things or have different preferences. We do. It’s just that it’s rare that we might have different views and it is a super high priority for both of us. If something matters more to him than it does me, then it’s easy for me to let go of what I wanted and he is the same. Sometimes I do do things that don’t feel instinctively natural, like offering to give him a Creme Egg. Sometimes he will take it and say thankyou and sometimes he says it’s ok and I should keep it for myself. Sometimes I cut up onion for him.

Where I run into problems is when what I want to be able to give him does not match up with what I have the ability to give him. I want to give him everything. The world. All of the most interesting and exciting things there are to see and do. But not even all of those things that aren’t even realistic for most people. But maybe the luxury of a car with decent air-conditioning and a stereo that works properly. Of not having to feel bad when your glasses are going to cost a few hundred dollars. Something he has been interested in doing for ages is getting a motorbike license but the course to learn has always been too much. I would love to be able to pay for the course for him as a surprise for his birthday or something like that. Like this year would be especially good because he’s turning 40 and it could be his midlife crisis, right on time. As it is he will probably have to go without one because we can’t afford it.

He doesn’t complain about these things. He doesn’t ask more of me than I am able to give. He actually encourages me to take it easy and rest more than I am likely to do by myself. I apologise sometimes for not having managed to do a particular thing on a particular day and he tells me not to worry about it. And I am so glad that he doesn’t worry about it and doesn’t feel resentful or ripped off at what I can’t manage. But I do feel that. It’s not just material things. Sometimes I would like to be all kinky and throw him down and do unspeakable things to him and be the boss and whatever… but five minutes in and my body is saying ouch. Or he wanted to go to a boating and fishing show and I said I would go with him and he said he thought it would be a lot and I said I’ll do it anyway because you want to go, but then he said it’s at like [wherever] and I realised that it really was a gigantic place and I probably could not actually do that. It is hard not to resent the things that I have to give up on and let go of because of this stupid condition. When it means that he is also giving up on things, it’s almost unbearable.

But somehow he doesn’t seem to be bothered by that. He says he just wants me. And that’s where I have a problem understanding, because I don’t know what is so good about me. There are the obvious reasons, of course, with baggage and being conditioned to believe that I was a pathetic excuse for a normal human being and that is a big factor. But even logically putting that aside I recognise that there is nothing special. There are lots of people that share some of the same traits that I do that are what I think make me a decent person. Some of them even aren’t crazy or fibro’d.

But then I think about it the other way around. If he was the one with fibro or anything else, I would do all I could to ease things for him. And I wouldn’t be mad about it because it would feel worse to know he was hurting and not do anything about it. And he is a good person and has lots of good qualities but so do lots of other people. But none of them appeal to me. So what is it?

Je ne sais quoi.

No one else is him. It is intangible, it is something I feel in my heart and my soul and in my breath and dreams and through other dimensions and lives. And knowing and feeling that means that even though I don’t fully understand it, I can believe that he wants me because no one else is me.

twenty

nausea

I feel nauseous. Partly because I feel like everything is going to shit and partly because I’m still in the middle of a migraine but I can’t go and lay down because then it feels like I am doing nothing and being the cause for all of the problems.

Arthur’s transmission went. We got some money from cashing in some of Daniel’s accumulated holiday time and got Sirius. Now Neville is fucked. I knew he needed some stuff done but I didn’t realise that it was so bad that he is essentially not legal. So. No one knows what the actual problem is, so the only way to try to fix it would be to start swapping out parts and see what happened. That is of course not an economical option and therefore not an option. He’s registered until December and I had been hoping to try to save and scrape together something to find something to replace by then but looks like it is much more urgent than that.

So looks like I am back to not having a car for a while.

The Abigail situation is as always on a balance and you never know when it’s going to become unstable. She lost her shit a while back and I have contacted CYMHS and others asking for help. CYMHS referred us to some other place. They did shit fucking all. The lady that called me said that they had some possibilities if Abigail was willing to work with them. There was some kind of intensive youth worker who would work with her from home to try to teach skills like not going psycho on your family but she didn’t qualify for that or something. I also asked what options we had if she didn’t want to be cooperative and she told me that there were none. There’s not really anything that can be done without the child’s consent. So thanks for that. I am telling all these people that she loses it at tiny things, or things that we have no control over, she has physically hurt us and threatened to physically hurt us and we don’t know if and when it will happen again and how bad it will be and there is nothing that can be done. So that was obviously a great helpful relief to know that we are all alone and no one fucking cares that our safety could be at risk and we (figuratively) tiptoe around her and lie to her in order to try to not set her off and we can never relax because we never know what could do it and there is no help available for us.

I did get a piece of paper from the paediatrician that says that she has been diagnosed with Autism Spectrum Disorder level 1. I asked for her to formalise the diagnosis because I wanted a fucking paper trail that shows I have been trying to get help for this and I don’t want to be the one that is blamed if she loses it one day and burns down a building full of people or something. You know what fucking pisses me off though is that we first took her to a psychologist when she was 9. We have been seeking help from various people and services since then. Everyone says that with ASD the most effective thing is EARLY INTERVENTION. Yet it took until last year to effectively get a confirmation that she had it, and even then the paediatrician told us there was not much point in formally recording the diagnosis because she functions too well at school and shit for her to ever see any kind of assistance. That’s because she’s extremely skilled in masking or camouflaging her ASD traits to seem normal when she’s in public but then the weight and effort involved in that results in us dealing with the fallout. But it’s not like we didn’t TELL all these professional people these things. We did. So why did none of them pick up on this? Time and time again I told people how bad it is and how miserable it makes us all and all we got was “do a parenting class” or “be more firm.”

Anyway. Apparently with the piece of paper that says she has ASD we may be able to claim a Carer’s Allowance. So I have applied for that. I don’t know why no one felt the need to mention THAT when they first confirmed to us that she has it, either, ’cause in the in depth family history and shit they take it has certainly been mentioned that we are not exactly blessed with an overabundance of dollars. And everything helps.

But whatever.

Oh, and still haven’t heard anything about the DSP.

nausea

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