I was searching through my hard drive and came across some old writing – not journal entries so much as little random bits here and there. Times that I must have gotten on the computer and just let the thoughts flow.
This essay was written in 2009. I’d just been discharged from yet another hospital stay, and ended up in the same old spiral as I’d been falling into for years. The desperation and feeling of hopelessness in this saddens me now. During those years, I knew no way out. All I had to look forward to was more of the same, until my body gave up.
There was a better ending than I anticipated – I’m pretty sure that it was after this admission that I started begging the hospital team to help me gain more weight than I usually did – to the weight that I am at today. I had a couple more admissions to achieve that – but I did, and I have maintained – whether that is a fluke or not, it’s given me another chance at life that I really don’t think I deserved. But that I’m determined to make the most of.
Please be aware that this is a highly triggering piece of writing. It talks about hospital treatment, weight loss, food, eating disorder habits, death and hopelessness.
Monday, 13 July 2009
I was discharged from my 125th hospital admission on Friday afternoon, 10th July.
It was a nightmare in many ways and lifesaving in many others. For the first time I made a significant breakthrough in that for the first time in about a decade I was able to keep everything down (and eat everything too). I struggled most with the crap going on around me (petty molehills become mountains that lead to major arguments and tantrums in the stuffy HDU microcosm) and the crap going on in my head – either totally overwhelming, spending too much time sucked back into the things I never want to remember – or totally vacant.
When you’re too Ill to be sedated and so are restrained in bed in order to protect your PICC line and the TPN; when you’re too immune-compromised to be transferred to Wattlebrae as they now have swine flu there, but as soon as you fight off one infection you pick up yet another; when you’re traumatised already and undergoing way too many more invasive procedures; (the worst I think was one of seven PICC insertion attempts – in the ICU, without anaesthetic. They couldn’t get it past my shoulder and were yanking it out of the socket and kept cutting the site, then stitched it into place – I felt like a fish that’s been hooked. All that, and the x-ray showed it wasn’t viable anyway, didn’t reach my heart) – you lose yourself and become a body that seems to be everyone else’s piece of meat. Indeed, I often wondered if any of the Treatment Team ever considered what they do to my spirit? It’s shattered even more each time I’m there, ‘til I wonder if it wouldn’t be a kindness to actually let my body die. What point dragging this broken mess back to life again and again if there’s no quality of life and you’ve killed the person inside the body? My whole life has been spent being punished by others, punishing myself… and then I go to hospital where they punish me again for all of that.
I concede inferiority – all my life it seems I’ve been trying to convince people I’m not as bad as they think. But if I’m the only one who believes that (and I don’t, anyway) – then they’re right. There’s something very terribly wrong with me and always has been.
All my life I’ve been running from something. From danger. From violence. From myself. This time, I ran from Death. Or was it the fear of death? Whatever it was, it got me stuffing myself with my entire meal plan in a shock turn-around, and keeping every bit of it down. Of course, it was agony, in my mind and body. This body hasn’t had any solid food really stay in it for nearly a decade and it struggled, strained, raced, sweated. My mind thumped me in every way, every moment of the day. We’re trapped now. We have no choice. But I’ll get you, I’ll make you pay, when you are free from here. The eating cut the expected couple of months on TPN to just a couple of weeks. And I was home by the end of the week it was ceased.
No preparation. No maintenance. Just straight from two months in a bare hospital room to the chaotic big wide world.
I hoped I’d be able to keep things going. I want to LIVE. I know that if I can’t nail it now, I will die. I’m desperate to survive.
It’s been a mess. It’s been like ‘imploding’ – fragile, newly-bolstered hope caving in unsupported by any confidence within. Social phobia returning as strong as ever – now I know why it’s so hard to remember what the world’s like when I am hospitalised. I don’t look people in the face anymore, I go about anything I do with my head down in shame and fear. Withdrawn. Even at home, I don’t take in my surroundings much anymore. It’s chaotic and too busy on my eyes. They like to be closed, and words don’t come easily anymore either. I try so hard to be there for my beloved Shalimar yet it seems I am so vacant in my mind, she can sense it. And it frightens her as much as it does me.
I like that word – ‘imploding’ – for describing this parasitic eating disorder. It is like one is collapsing in on oneself as the disorder eats away more and more of your inner core. You pull away from others, curl into a protective shell as small and invisible as possible. In trying to feel ‘safe’, you find yourself increasingly alone with what’s trying to kill you, more endangered. ‘Exploding’ happens, too. I would describe that as the ‘fighting’ stages of this – when you’re resisting it’s pull as much as you can and it’s fighting you back. You fight to get the food in, it explodes it back out. You fight to save your body in every way you can, and it finds more and more violent ways to undo any good you’ve achieved.
Where to from here? I’m a mess. No matter how much or what I buy from the supermarket, when I try and put it together in my head, it doesn’t make any sort of sense. That’s if I am successful at the supermarket. I can write a concise list of what and how much I need, but being faced with aisles of cans and boxes and bottles, so many colours, so many numbers and letters and names and varieties and sizes and so on – I just freak out. Brain goes off. Autopilot takes over, I come out with a basket of stuff I haven’t a clue why I bought it and what to do with it. And none of it’s anything I even feel like eating. (Four packets of plain pasta… a bunch of different seasonings reduced to clear… one of every different variety of non-dairy milk in the UHT milk aisle… three tubs of margarine which I don’t eat and haven’t anything to put it on.. What can I do with that? )
The fruit and vegie shop’s still chaotic for me, too. If I can haul myself out there early enough in the morning, there might be a fair variety of stuff on the ‘reduced’ rack and that takes away the problem of actually choosing stuff. If it can be cooked and it’s colourful and tastes ok, then I’ll grab it. I end up with a lot of capsicums, apples, eggplants, tomatoes and sweet chilli, but that’s ok. I like them. The staples that I’ve always been addicted to – pumpkin, cabbage, carrots – are in season and plentiful. The hardest part is craving sweeter, water-rich fruits – they aren’t very easy to find at the moment. Lettuce used to be wonderfully refreshing when I could eat it raw, but even if I can (and I did try) at the moment my mouth is sore after just a bit of chewing and full of too many ulcers. Not to mention it’s fricken cold!
I really have to pull away from relying pretty much on just fruit and vegies though. They aren’t going to keep me alive – especially if I can’t keep them down anymore again. I’ve spent about $150 this weekend alone just on Up&Go drinks, Sustagens, etc – Nutrition Australia can’t get any supplements to me till tomorrow – though I rang them this morning and they might be able to get a few Resource+ drinks out to me today. But I can’t stomach them very well and they’re about a third of what’s in a Resource+. (360 calories and all your nutritional needs in one little popper) My taste buds must be screwed, too – it’s not helping that everything tastes like mud.
Whoa. All I do is complain! It’s a blessing to be alive, to be free again, to be back with my Sweet Shalimar. To sleep in my own bed again, wear my own clothes, keep my own times, be warm, have privacy, watch TV with teletext. Have nobody telling me that a few mills more of boiling water to soften my weetbix will blow my 1.2L fluid allowance for the entire day (since supplements and liquids in meals are counted, thirstiness is something I feel all the time in hospital) and nobody measuring my urine output, having to wipe my bum, wash me, even worse forgetting to wipe my bum – you end up smelly and damp from drip-drying into your undies. All dignity goes out the window in hospital. Not that I had any left.
I want to make the most of everything wonderful in my life. I want to stop taking it all for granted. It’s a miracle that I’m still alive, and I’m blessed with the most wonderful friends and some family. I have Shalimar, a place to live, clothes to wear, shoes for my feet, food to eat (theoretically, anyway) and all my basic needs. The biggest blessings are the people I love so much, and what’s left of this beautiful Earth. Je’aime la Nature.
I’m scared, God. I know I don’t talk to you very much anymore. Like everyone else, you’ve been shut out. It’s so hard to break down the barriers I keep rebuilding every time I manage to smash them down, and I’m tired, very tired. But please, my God, please hear my cry. Please have mercy – I don’t want to die, not this way. Please, I had hope that I could get around the mess in my head, that I had turned it around, but I find I am as trapped as ever. Will I ever be free, will I ever overcome this? I’m a survivor yet this battle is proving to be the most arduous I’ve fought. Terrifying how one’s own mind can be a stronger, deadlier foe than the physical dangers I’ve battled.
I can’t stop hearing [consultant] saying “You WILL die”, if the TPN was unsuccessful. I can’t help remembering how much of a struggle it was to insert a PICC line anywhere – my veins in both arms have been ruined now. I’m lucky to have even been alive to see another hospital admission – nobody thought I’d pull through last time and they all warned me that my body wouldn’t survive even one more physical relapse. What terrifies me is how sick I still really am in my mind. My body was bumped up about 10kgs really fast – but now I’ve lost nearly half of that in a weekend. Nothing was done for my thinking or my mind or learning how to care for myself. I’m trying so hard but as trapped and scared as ever, so powerless. Still fighting – ever fighting – but the feeling of hopeless futility is stronger than ever. I’m going down again already – and it doesn’t look like there are any options left now that will help me live. A long time ago, if I’d helped myself, I’d be far better off today. Now I’m beyond the point of having any control over this or even knowing how to fend off the blows in my head, the battering it gives me every breathing moment (even in my dreams/nightmares). Now there’s nothing left to even physically save me if I’m ever admitted to hospital again.
Please help me God. Help me help myself.
I didn’t survive all I have, to die of a piddly pathetic eating disorder.