england

Going to England was a different experience for us. Daniel and I have never actually travelled together just the two of us. When I came home from England the first time, his visa was not yet approved so I had to come alone and he came a couple of months later. The next time we went, we had Stephanie with us, and all subsequent times we had kids with us too.

Deciding to go – just the two of us – was hard. I didn’t doubt Stephanie, Dean or my Mum’s willingness to make sure that the kids were looked after. I did struggle with whether or not there would be difficult moments or incidents and whether or not it was fair or reasonable to leave them to deal with that. Abigail had really wanted to go. Not because of anything in particular, but because she doesn’t like to miss out on things and she doesn’t like to think that we aren’t there to do what she wants or needs. When we pointed out that she’d be bored as batshit because there would be no internet and no TV (the accounts/TV license etc were all cancelled soon after Allan died,) no other young people to talk to, and the majority of the time would be spent sorting through and cleaning the house, and it would be fucking cold, she decided maybe it wasn’t so bad to be missing out.

In the time between when we got booked and got the dates finalised and when we left, I did all I could to make them all as prepared as possible so it would be as easy as I could make it for them to manage. The three kids actually took it upon themselves, with no prompting, to plan out a menu for themselves for the not-quite two weeks that we would be gone and I stocked the cupboard/freezer with all I could in advance to minimise the amount of shopping Stephanie and Dean would have to do. It was arranged that Abigail and Kristian would go to my mum’s over the weekend, so they planned with her what they would have/do while there as well. That way Stephanie and Dean got a bit of a break. During the week the kids had to go to school as well so it was not like full 24 hour days that they had to be supervising them.

I still had a bit of worry that there might be an explosion or something, but Stephanie and Dean knew what to do if that happened and I kept reminding myself that we don’t have to cancel our lives because of that possibility. What we need is also important. It was important to Daniel to go. We did not go when Lisa died. That wasn’t a problem, we had seen her six weeks earlier and we were quite aware that it was going to be the last time. We were comfortable with that choice. But this time it was not ‘just’ Allan. The things that needed taking care of, the house that needed clearing out, the belongings that had to be sorted, donated, thrown away, etc. It was both of them, even though he was the only one living there for the last four years. It was the last chance to do something for his parents, and he wanted it not just for himself but so that it didn’t all fall to his siblings to handle. As it is, there is a lot they have to do anyway because we are simply unable, being so remote. When I say ‘they,’ I mean Nikki and Lee, because.. well, Sandie. Chris is the executor anyway so technically it’s all his job but it’s not like anyone is going to just ignore it all and leave for him to deal with.

Something else I thought about a lot is whether or not I was physically up to doing this. I wanted to go with Daniel for multiple reasons, of course primarily because he’s my husband and my heart and I wanted to support him because his Dad had died and it’s pretty shit. But there was also that the whole diabetes thing was still very new and being my strict and paranoid self, I wasn’t sure I could trust anyone else to look out for his needs as obsessively as I would. And like, England food is different. We had been eating so much salad and I knew that winter in England would be.. not very salady. He also was committed to doing the right thing and eating smart, but sometimes forgetful or just not aware when things were ‘yes’ or ‘no’ since I am the main meal planner and maker and had done a lot more research than he had a chance to given that he works full time. So my second reason was because he needed me to look after him. He said he needed me too, not because he’s a useless idiot who can’t look after himself but because he is unaccustomed to having to think about a lot of these things since those are my responsibilities in our team, and trying to start thinking about them all in a foreign country while you’re in a heightened emotional state is a big ask. And it was good to have him say he needed me. So often I feel like I don’t do enough, because I want to be able to do so much more and to have him tell me that he does need me and that what I do does make a difference was really meaningful to me.

Anyway. In terms of my health, I figured that my activities would not be so different in terms of physical demand to my normal life and if it did turn out to be too much, I made sure I bought plenty of medicine with me, which it would not be a problem to take since I did not have to make sure I was available as a responsible and alert adult who could drive. (We only had access to a manual car so I couldn’t legally drive anyway.)

As it turned out, I had a really good couple of weeks. A lot of what I usually do was greatly reduced as well as being shared by Daniel. We only had to feed ourselves, we only had our own clothes to wash and dry, when we went to the supermarket he was there to help and we were free to move as slowly as I needed because we had the luxury of time to go at my pace. The first day after we got there I was feeling pretty terrible and had to keep refreshing the PFs regularly, but I think that was a result of airplane confinement and the ludicrous amount of walking that happens in airports. And though we did a lot of emptying of cupboards and shelves and drawers, and sorting through all of the stuff we found, I was able to sit for a lot and we also took regular breaks when it started to get boring or painful, and the breaks were actually breaks. At home when I take a break from one thing it usually means going and doing another thing for a while so that one part of my body stops hurting and another one starts. Hips hurting from doing dishes? Go and fold up some washing until the burning in my back becomes too much. I didn’t have other jobs to do and other responsibilities to make sure I managed to complete before everyone got back from school and work so when I sat or laid down to take a break I could actually let go and relax. It was ok if I fell asleep for a bit. The opportunity to take real breaks and listen to my body and move at my own pace without constantly feeling the push of the clock and the weight of responsibility and the need to manage everything before I got too tired and too sore was quite eye-opening. Because I am figuratively wading through molasses so much, making a lot of effort to achieve what sometimes looks like so little; because I am so exhausted by what I do manage but I am also victim to that social expectation that the modern woman should be able to manage home, kids, hobbies, a job, a side business, a perfect relationship, charitable work and do it all with ease and grace; I feel like I am letting my family down. Not having to manage what I usually do made me see that I do a lot more than I often give myself credit for and having the luxury to listen to my body to keep the pain and exhaustion at minimal, manageable levels was a reminder that I am doing enough. It was also a bit sad to feel so comparatively good and remember that for most people, that is normal yet for me it felt almost revelatory.. oh yeah, this is what life is supposed to feel like. That you become so accustomed to hurting and aching and pain and exhaustion that you literally cannot remember what it is like to feel ‘normal’ is one of the hardest and cruelest parts of having a chronic illness. Because the aching and hurting and tiredness become normal to you, it is easy to forget that your normal is not everyone’s normal, and when you feel like you’re not achieving much it’s so hard to not blame and doubt yourself.

I even felt good enough for us to decide to go for a recreational walk around the lake one day. I don’t know when the last time I felt like that at home was. Sometimes we try to do things like that anyway, because I get tired of not doing things, but it’s always with the knowledge that it’s going to come at a price. Anyway. We did try to go for a walk and it was nice but we stopped for a rest at a bench and then we decided that was enough of a walk not because it was too much for me but because it was FUCKING FREEZING. It was also very late in the afternoon, like maybe 1530 or something ridiculous so it was starting to get DARK and even colder so we were like, nah, fuck this.

england

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

the f word

Not the fun, four-letter f word which ranks highly in my list of preferred words; but the less fun, longer one that means questions with no answers and possibilities with no definites.

So I saw the doctor that pseudo-specialises in difficult stuff. He confirmed the diagnosis of fibromyalgia. He did do a couple more tests just to rule out a few other things but he is not expecting them to be positive. Clearly my heart and my veins thought these were not going to be useful tests as well, because they were doing their damnedest to avoid giving any blood for them. (How fucking screwed is it that the blood bank people won’t take my blood because omg tachycardia what if your heart pumps out all your blood at once and you die yet the actual reality is that extracting blood from me is usually a task accomplished by only the most skilled vampire phlebotomist.) Had to get jabbed on both sides and the woman actually had to use a syringe to suck the blood out since it did not want to flow on its own. I have a phone appointment booked for Friday to just check on those results, so we don’t have to drive all the way back to Coorparoo. The guy wrote a list of stuff that can be tried which sometimes helps people to feel better and less painy. In order to know if something is actually helping I can only try one thing at a time. The first is magnesium. The jar of stuff claims that it has a “natural orange flavour” but, ugh. It was disgustingly sweet. Like vitamin C pills dissolved in water with a few spoons of sugar added. I could not get through the whole lot yesterday, I think I am going to have to build my taste tolerance to it. Have to give it 3 to 4 weeks to see if it makes me feel any better and if it doesn’t, move onto the next thing. Which is probably also not on a prescription. So there is no PBS price or safety net or anything like that.

I’m unsure how I feel about this. The f word. (It just sounds cooler to say that.) On the one hand, you can say to people I have fibromyalgia and most people will at least have heard of it so there’s less explaining to do than trying to tell them that what SD is. On the other hand, fibromyalgia is essentially characterised by it’s lack of unique characteristics. The symptoms overlap those of numerous other musculoskeletal or rheumatological conditions. There’s nothing to test for, except for testing for all those other conditions and confirming that they aren’t there. Research into the causes and mechanisms of fibromyalgia is still very much in early stages and there is a long way to go before it’s properly understood. Theoretically, even, all the people who have been diagnosed with it could have five or ten or a hundred different conditions which they just don’t know about because they’re similar in presentation and no one knows yet where to look to differentiate them. And maybe that is why some things work to improve some peoples symptoms and not other peoples.

It’s very difficult for me to feel just acceptance at having something that cannot be explained. It’s not like it’s a new thing, because to a large degree, whatever is wrong with Stephanie’s legs is also not explained/explainable, and that has caused me just as much frustration. If they don’t know what is causing the problem, it is therefore also impossible to know that they are doing the right things to alleviate it. The best you can hope for is trying things that help some people and hoping they might help you. I suppose that this is valuable in it’s own way, in that it possibly contributes to the greater body of knowledge that potentially will one day lead to someone figuring it all out. When you (or your daughter) are in pain now, though, that’s not the most comforting thought.

It also gives you a bit of an understanding of what is considered an acceptable “cost” for your life or quality of life. While many people like to say that you can’t put a value on someone’s life, on them living pain free.. it’s simply not true unless you happen to be a gazillionaire who literally has no possibility of running out of money, ever. You reach a point where “they” say that it is not worth pursuing any further investigations or where a doctor can prescribe something that has research-supported evidence as being beneficial for you but it’s not recognised for support in the way that other medicines generally are. With Stephanie it was a refusal to do an MRI on her brain – the last logical place to look, having ruled out anything physical going on in her legs, hips, spine, immune system etc. Or, we could get the MRI done: if we paid almost $700 out of pocket. There are many, many people for whom that is just not feasible. As a parent watching your child learning to live with pain, it seems dreadfully unfair that the government/medicare – who could no doubt run the test for a much lower cost using their own equipment – won’t, while politicians get base incomes three times greater than the national average, as well as ludicrous allowances ($276 a night!) for things like staying in what is essentially their own (second) home while they’re in Canberra. How is that fair? Why do people who have more than enough money to opt-out of our national public health system get to determine limits to how far it goes to support the people who have no choice but to use it?

Anyway.

Another thing I’ve been feeling rather bitter about lately is this whole “pain management” thing. Recently a rule was introduced where any medication containing codeine now requires a prescription. Previously it was possible to get combination medicines with low doses of codeine over-the-counter at a pharmacy. Apparently, people get fucking high on that or some shit.. I don’t know, because I can’t imagine how you possibly could but that’s maybe because I only actually use them for trying to stop pain. But as a result of this change, there have been these ads popping up around the place saying things like.. “your local pharmacist can help you to come up with a pain management plan tailored to your needs” …. (now that we won’t let you have actual drugs that would actually take away your pain lolz.) The words “pain management” are a fucking joke. What it means is that they want to teach you to do things even though you’re in fucking pain, and not let it show that you’re in fucking pain, so that once you have mastered this skill they can pat themselves on the back and say look at what a great outcome you have without the need for medicine after all! and because they no longer have to see that you are in pain, they can tell themselves that you aren’t and that they fixed it and feel good that they did something benevolent and have helped stop the evil plague of opioid addicted losers.

If they don’t want people to use opioids, then why don’t they come up with an alternative that does not amount to grit your teeth, slap on a smile and walk it off? One that actually takes the pain away. Not just makes it appear to everyone else that it’s gone. “Pain management” is not for the person in pain, it’s to reduce the exposure of everyone else to your suffering. Because suffering is a weakness and this world hates any form of weakness.

the f word