Hi! Oh boy have I missed the internet! I was forced offline for about a week, and it was hard – pulling your own teeth out hard! A mix of things being financially tight and even more than that, the fact that I’m still under the guardianship of a public trustee, meant that it’s been a long 6 month process (more like all out war) in order to be able to finally purchase decent plans to use both internet and mobile phone.
One of the long term side effects of living with an eating disorder is very often financial problems. For me, it’s meant I’ve been unable to have a paid job (so far) and living on a disability pension. I’m very thankful for that – but as most people will say, it’s already quite a pinch.
Add in an eating disorder and things can be disastrous.
Thankfully, as far as I can remember, I never defaulted on rent or bills, or paid them late. But things got more and more difficult as I was hospitalised so much. Back in ‘those days’ – the pre-millenium years – we didn’t have automated bill paying or money transferring services like BPay, Centrelink etc. Every week or fortnight, I made a trip to my bank to take money from my account, then a trip to the bank of my landlord, or the post office, or the real estate agent or leasing office to pay my rent in person. I paid my electricity bills and phone bills over the counter at the post office. Same for other bills and expenses that popped up here and there – you couldn’t jump online and electronically transfer the funds without leaving your home. You had to go out and do it in person.
You can’t do that when you are always in hospital! So it did get quite tricky, and I was worried. My accomodation was boarding houses and hostels mostly at that stage – and it doesn’t take much to lose a room. I was frightened of what might happen if I got so sick I was unable to let anyone know where I was or pay my bills – I might get out of hospital to find I had nowhere to live at all any more.
More seriously, bingeing happened. Specifically, bingeing and purging. I had emotionally eaten before my most serious descent into anorexia to the degree that I was borderline overweight for a very short time. And I remember being so out of control with the stuffing and the musteat-can’tnoteat-can’tbearnottoeat feelings that I would be in physical agony and crying, and just lie down long enough for it to settle a bit and be needing to eat again. But I didn’t have the money worries that bulimia brings. I was able to go without the excess food if I didn’t have money for it.
Bulimia meant I was taking away just as much as I was putting in – still in starvtion, in fact probably making it worse because I was losing stomach fluids, nutrition already in my system etc every time I purged, and creating a chemical chaos for my bloodstream. Being physically uncomfortably full didn’t happen, or at least if it did, I ‘undid’ it. I could eat a truckload of food and still be starving ravenously hungry.
Purging is, in hindsight, the thing I’d most like to go back in time and ‘unlearn’. The rest of the eating disorder was hell enough – purging was like opening the very gates to hell and being unable to ever shut them again against the hordes pouring out. Even in my fight against dying from starvation from the anorexia – it’s more complicated for me because of the purging. Before purging, it used to be a battle to follow the meal plans and put on the weight, especially when not in hospital and on my own – but at least once I got the food in, the physical part of the fight was over. Ed thrashed me in my mind, but it couldn’t do anything about it, and that was the end of that. But with purging, it wasn’t the end. Because hours after I’d won that battle to eat, I was still able to undo all my hard work in one moment. It was absolutely gutting to have fought so hard and to undo it all just like that, be back where I started or in even more a precarious position.
I had some savings, but it wasn’t long for bulimia to have totally eroded them and I was taking the last bit of cash to my name out of the ATM machine. That was a shock for me, as I had been in denial and not keeping note of how much money I was spending any more. Suddenly it was gone and I knew I had no choice but to stop this, now. I couldn’t say to myself any more that I could just do this for a while, eat everything I craved for once, and then stop it next week or next month and get back to normal. I had to stop it NOW or I was in trouble.
Except I couldn’t. I found myself frantic, unable to cope at all without the bingeing – which in the short time I’d been doing it had become my major coping mechanism after starvation – and yet unable to cope in other ways if I continued. I could no longer pretend it was just about me ‘making up’ for all the missing out and starving, no longer pretend I was just ‘tasting all the foods I had never gotten to try’. The foods became the cheapest, blandest stuff on offer. Old, discarded, stale, it didn’t matter, if it was edible, it served a purpose.
I wonder if people who become addicted to drugs start off that way too, they care about the quality of the drugs they are taking, and then when they are desperately addicted and the funds run dry, they’ll take anything they can get. Same with drinking, where the person might start out with cocktails or beers and end up slugging down methylated spirits?
Long story short, if things were financially tight before, they were precarious now. As I said before, I didn’t actually default on my responsibilities – but I was terrified that it was only a matter of time. My pattern became that I’d get my pension, immediately pay everything that was due, then the rest of it – usually about $150 or so – would be binged away within about two days. The rest of the fortnight I walked everywhere and went without food whatsoever. I do have to admit, part of me purposely wanted to get rid of the money as soon as possible – because when it was gone, the bingeing was over. And sure, it was hell not being able to binge, but I preferred the numbed control of the starvation.
It was not sustainable, and I knew it. I started scrambling for help. And somehow I stumbled on the public trustee of my state. I’m fuzzy about the details, but I asked them for help, with the support of my case manager, and they took over.
Took over, completely. All my pension goes to them. They control every cent I own. They pay the bills – rent, utilities, pharmacy account, nutritional account, cat boarding account, etc – and give me a small allowance weekly for my food, toiletries, transport, household items, and most importantly, Shalimar. They have a strict budget to allow me to purchase items or pay accounts that come up during the year. By ‘strict’, I mean, blood flows more easily from a stone. The trustees are notoriously strict and out of touch with their clients – I’m not the only one who has complained – and I think they forget that they have a lot of power over our entire lives.
Asking them for a more affordable internet and phone option should have been straightforward – after all, we are in the business of saving money, right? But no. They wanted me to continue with a heinously expensive and unaffordable pre-paid option that I simply could not afford. I’d go through the tiny amount very quickly and then be fighting with them again for more. I gave them quote after quote for plans that were more affordable and better suited to my needs, each being rejected – “No plans over six months in length” or “You must have unlimited data allowance if you are on a plan” (which would be great, but I couldn’t afford that sort of plan. I am not even a heavy user, I probably use 4 GB a month) Finally they were saying, “You can’t have the internet.”
Most people will probably think, so what? What’s the big deal? Internet is a luxury. I fully agree, it’s a luxury. I could go to my local library and use it there, for example. But – I’m deaf, remember. Profoundly deaf. I struggle to pick up a lot of what’s said to me in person. When it comes to communicating over the phone – there isn’t a hope. I’m also extremely isolated. I live alone, and despite being so much better, I’m still physically pretty unwell. (Shalimar is great company, and I do not know how I managed to cope without her, I really don’t – but let’s just say she’s not the best conversationalist )
For me, the internet is a lifeline. I make phone calls online, using a relay service. During the day time, I communicate regularly with my case managers and support workers and even my therapists with SMS and email. And at night time especially, I use it to distract myself and to recieve and give support. I talk to my friends, both those I know in person, and those I have only (yet) met online. I use it for meal support in that it takes my mind off the meal to some degree, and then it occupies me and keeps me communicating rather than sticking my head down the toilet afterwards, and it keeps me out of the fridge and pantry at my most vulnerable times – or at least delays all these things, which is a good start.
Also, unlikely but extremely important – if I don’t have the internet, I cannot call for help if I need it. I cannot call our emergency services – because I cannot hear on my phone. We don’t as yet have text support to contact emergency services (although I hear it’s been on the agenda for a while). Unless I’m able to SMS a friend and ask them to call emergency services for me – and that’s time consuming and often not really something I want to do. I don’t want to worry them, for example. And they might not have their phone turned on or read the text for a while, and then I’m stuffed!
I used to be such a loner. So withdrawn and shy. I lived in my own world – I didn’t want a bar of this world. Much of the time I was actually dissociated – and I preferred it that way. My little inner world was safer than the real world. But these days, I’ve come to crave social interaction. It’s the people I’ve met, the friends I’ve made and come to adore who make my world go round, my life worth living. Even when I’m not up to talking, just sitting here and seeing people talking on facebook or somewhere else helps me feel not so alone in this world. It literally opened a huge window to the world where before, there was only the blank stone walls of my self-imposed exile.
So the internet, far from a luxury for me, is essential. But I had to fight hard to get it. It took more than six months, and the last week or so, things were dire to the point that I had no internet, no data left on my mobile phone as I used it to tether to my computer for internet, and was running short on texts. The walls were closing in, and I realised again just how isolated and alone I am, how quiet things get, without it. I am SO relieved to be back on air.
If it wasn’t for my eating disorder I wouldn’t have the financial constraints on my life that I do. I would be working and earning a decent amount, or at least more than the pension. I wouldn’t have the costs occured during binges or needing so many meds – the bill at times can be around $75 a week. I wouldn’t be needing to pay thousands in cat boarding fees every time I went into hospital. I wouldn’t have wasted thousands on taxis over the years when I was unable to physically get home due to weakness or imminent collapse. And so much more. Most of all, I wouldn’t be with the public trustee and having to fight to get things that I consider neccessities.
So I’ve been thinking a lot more about this whole situation lately – and with the support of some very close and wonderful friends – I am applying to come off the public trustee. This is a terrifying thought – much as I hate them, after all these years I don’t trust myself to manage my money. I feel like I have totally forgotten how. I’m scared that I’ll binge it all away immediately. But I have support I never had in the past. I have options I didn’t have like direct debit for bills. And I have come a long way in many ways including, I’m a heck of a lot more mature than back then. So I’m finally taking the leap. First step is applying for a tribunal hearing, collecting the paperwork necessary, and showing them that I can make decisions myself now. Then… I don’t really know. But hey, I know now that I can deal with it.
So, this blog entry began as a way to explain why I haven’t been online as much in past weeks and not at all the previous week – I certainly do ‘tangents’ well hey?
In other news – therapy is going well. And I’m just plodding along, at times just hanging on tight -because that’s sometimes all we can do.
Next week – in eight days actually – I’m going to Melbourne! A long anticipated visit to a very dear friend – she’s going to show me her beautiful Victoria, and then we are driving up to New South Wales to attend a camping festival.. I’m so excited. And so terrified! I haven’t been camping since I was in school – I loved camping, but have no idea any more how it’s done… okay that sounds strange. When I was a schoolkid, life came a lot more naturally to me. And I didn’t have an eating disorder to deal with. Any trip away from home is extremely difficult for me because of the eating disorder. I have no idea how I’m going to go when camping – but it’s going to be a great opportunity to find out. I hope so much that I’m able to fully participate – and I’m going to try my best. I intend to enjoy campfire meals, toasted marshmallows, exploring the surrounds. I’m taking my art stuff and going to be doing a lot of just drawing what’s around me. A lot of reflecting and journalling. Chilling out. Reconnecting with nature. And at night – after all these years of city living, I’m going to be able to stargaze again without city lights for miles and miles. I’ve been told it’s amazing. I can’t wait.
Bring it on
Ironically it’s going to mean another week or more away from technology – there is not even phone service where we are going – but this is going to be a good sort of tecnology-free period!
Thank you so much to everyone who has commented and been reading – I have a heap of your comments that I’m dying to answer and just haven’t gotten the chance to yet. I have been reading them - and I’m always extremely grateful, touched by your support, and intrigued by your views. Thank you for being patient with me while I’m so scarce lately! I also look forward to slowly catching up with your blogs – I’ve missed so much of what you are all up to and what you are writing about – and I’m deeply sorry for that.
Hoping you are all well! Thank you for reading