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?