Wednesday, 30 March 2016


For the past week and a half, I've been in hospital with pneumonia.

I put off hospital for as long as I could, but last weekend, it reached the point of being unbearable. With my GP away for two weeks over Easter, I came straight in to Private A&E last Monday. My O2sats were dipping as low as 75%, and no amount of painkillers would help me move from my armchair.

I never know what to say when I first come in to A&E for my lungs. I started telling the triage nurse that I thought I had a nasty chest infection brewing, following a cold going around the family, not to mention the six consecutive courses of antibiotics from my GP. First, my brother had tonsillitis. Then, my mum got bronchitis. And although I didn't know it then, I developed pneumonia.

They ask a few questions, I say a little more. Then, they ask,
  "Any history of asthma?"
And I laugh, assuming they'd have seen it in my notes.
  "No, but I have COPD (Chronic Obstructive Pulmonary Disease) and Bronchiolitis Obliterans."
Wide-eyed, they ask,
  "How old are you?!"
  "22, 23 in a month. I was diagnosed just after I turned 20."
  "...and what caused it?"
  "I don't know. Smoking. Bad luck."

Lungs of a 60 year old, bones of a 70 year old, pressure wounds to rival an 80 year old's.

The Lung Doctor Man came by later that night, shortly after I'd settled in and mum had gone home.
  "So... You haven't really progressed since I last saw you."
I'm still smoking much the same amount, still struggling to deal with my mental health in non-destructive ways, still self-harming, still starving.

The x-ray showed further thickening of my bronchiole walls. As is the nature of Bronchiolitis Obliterans (which I swear sounds like a spell from Harry Potter), they'll just keep shrinking and constricting until one day I won't be able to breathe any more.

Not one to dance around the facts, The Lung Doctor Man said I'm on the path to an early death. It's easy enough to do the routine treatments when I have exacerbations, but it won't change where I'm headed unless I start making big changes. This is my third admission for COPD exacerbations. 2013, 2014, 2016 - I got lucky last year, as they're all around March-May.

Part of me is relieved to have a serious issue with my physical health, something I can't be sectioned for for making it worse or refusing treatment. The words "consistent downward trajectory" were strangely comforting  to hear. Unlike the AN, where my GP now warns my BMI is approaching a point of being "no longer compatible with life", they simply can't force me to stop smoking and take better care of my lungs.

The Lung Doctor Man asked about my weight, and I told him that when the dietician last weighed me, I was around 44kg, but that I was working with her to get my intake back up to maintenance. All in all, I'm down about 10kg from when I saw him for an outpatient check-up last year.

Over the long weekend, they were renovating the ward I was initially admitted to. Wanting to make sure I got a private room, they transferred me on Thursday to avoid the stampede of patients being shuffled.

The first thing I noticed in my new room were a little set of devils lurking in the corner - bathroom scales. Despite being in the afternoon with a belly full of food and drink, clad in warm pyjamas and a cardigan, I couldn't resist. Before my bag was even unpacked, I stepped straight on them.

The next morning, they'd been moved. I shuffled my way to the tea & coffee room to make my first coffee of the day. On the way back, I got lost, and a nurse found me wandering and helped me back to my room. I casually asked if I could borrow the scales quickly, and I've weighed in every morning since. They're analogue (why?!), and hard to read from 186cm away, but with the aid of my phone camera, I've gone from roughly 44-45kg to 41-42kg in just under a week. If they're accurate, I'm close to the lowest weight I've ever been. 

I should note, I've been eating a lot more in here than I was at home, although I haven't been taking Ensure or any other supplements. I've been eating 5-6 times a day, compared to 2-3 at home. Most meals have been a slice of toast. With a poached egg for breakfast, with Vegemite for lunch, and sometimes dinner too, although I've had a couple of the simpler hot meals - grilled chicken with potato and veggies, things like that. Snacks have been fruit, dairy, dry biscuits. My kitchen scales were one of the first things to hit my suitcase, which always makes things a lot more manageable.

Unlike previous admissions, I've been skipping the nightly quarter bottle of wine. I've only had it the once. All I can think about it how much weight and bloat it'd add to the scales the next morning. A few days ago I got really anxious about my intake, and ended up stuffing my suitcase with blankets and using it as a makeshift aerobic step to burn 100 cal in 15 minutes. My lungs may not have thanked me, but apart from smoking, weight loss is the only thing that'll help me feel better right now.

It's the beginning of the end. I hadn't stepped on real scales outside of the dietician's office for the longest time. But for now it's keeping me sane, keeping me receiving treatment for my lungs. It's just one less worry, one more coping mechanism, while I'm in here. I have every intention to continue once I go home, with my old reliable digital scales.

I've been feeling very lost and alone. I'm getting more familiar with the staff by now, and getting my bearings as to where exactly I am, but to start with, it was just like being dropped off on the side of the road in the middle of town. It's not a very safe feeling. For someone who leaves the house so rarely, let alone by herself, being in here has been scary as hell. All of the staff in here are really nice though - everyone from the nurses to the PSAs to the cleaners.

I'm trying my hardest not to hit my head, mostly because of the seizures, but I've been scratching and hitting other body parts a lot. I have a 3-hour EEG and a MRI coming up in the next month. Not wanting to make a fuss, I hide in the bathroom because it's the quietest place, and sit under the sink so I don't bother anyone. It feels safer to hide in the corner, less overwhelming. Considering there's not a psychiatrist in the building, they're being really good about the self-harm. They just bring me meds and warm blankets and a cup of coffee, and gently remind me they're here to help and want me to feel as safe as possible. 

I've been waking up with nightmares a lot. It doesn't help if I wake up to find they've turned the lights out. I swear it happens at least once each admission. But this time, the nurse just apologized and bought me more meds, a warm blanket and a cup of coffee, and it hasn't happened since. The nightmares are chronic though. I must be screaming or making some sort of noise, and I think I'm kicking the end of the bed or flailing about, because most nights when I wake up from nightmares, it's enough to make the nurses come rushing in.

They're so real. I think it's because I'm so isolated, I don't have a lot to influence my dreams. They're always about the few places I go (mostly in the car en route to appointments) and the few people I do see, it's hard to identify it as just a nightmare and work through it like I used to. 

Even if I've only had my bedtime oxazepam a few hours prior and a PRN shortly before that, they bring me more without even asking to make sure I can get back to sleep.
  "Can I get you anything else? A cup of tea?"
  "A coffee would be good - black, no sugar."
  "Coffee will keep you awake. What about warm milk?"
  "I'd rather stay awake than keep having nightmares."
For the record, last night I had two cups shortly after midnight, and was still back asleep within the hour.

I cannot wait to get home to a real coffee and a cigarette. After spending the last several months brewing my own coffee fresh at home, the instant stuff is like lolly water. I'm not exaggerating in the slightest when I say I had 20 cups yesterday. It's like I've replaced each cigarette with a cup of coffee. I am allowed to go downstairs to the cafe and gift shop, as long as I don't smoke (I'm not that daft - although admittedly I did on my first admission), but without mum visiting much, I haven't really made it further than looping around the nurses station to the tea & coffee room.

When I first came in, The Lung Doctor Man wanted to call this new psychologist I had an appointment pencilled in with and get her to visit, but I haven't even met her yet. I was supposed to be going with my GP to meet her today, but obviously, that's not happening. It's been hard when, some days, mum won't even answer the phone. My first day in here was long and empty, with the home phone ringing out without going to the answering machine, and her mobile phone not ringing at all. Maybe the last mental health nurse was right, and she really is tired of me.

This morning, The Lung Doctor Man said my chest is sounding a lot better. Although it took its time, I've finally turned a corner. He was hesitant to send me home while my mum and brother were still sick, but they seem to be getting better now too, so I won't go straight backwards when I go home. With any luck, I should be home in the next couple of days.

After more than a week, I'm finally starting to breathe on my own again. Not perfect, but no where near as bad as it was. The biggest struggles are when I'm eating, sleeping, and moving about. They've taken me off the two different IV antibiotics and put me on oral, and they're tapering back the steroids slowly. After three cannulas and as many collapsed veins, I'm glad to be off the IV. It's terrible. I have 18 piercings, not counting the ones I've taken out over the years, and I still have to close my eyes tight to even have bloods drawn.

I'm supposed to be up and moving around more, but with the agoraphobia and anxiety in general, I'm having a lot of trouble getting further than making myself a coffee and doing a u-turn back to my room, which is about 150 steps for the round trip. Even when mum has come in and I've ventured downstairs, I haven't quite been able to get to the cafe to get myself a proper coffee. It's been too busy, too loud, too much.

I don't know how I'm supposed to even want to fight it when it's been confirmed I'm well on my way.

Apologies for the epic length of this post. Gold stars to anyone who actually waded through all this crap. For now, pictures.

One of the nurses had a pair of bunny ears over the long weekend, and on Sunday, he even had a tail and a basket full of chocolate eggs to hand out to the patients. Mine are still sitting at my bedside. Funnily enough, he's the first male nurse who doesn't automatically scare the shit out of me.
Everyone always comments on how well-loved my stuffies, Boo and Hazel (both gifts from my amazing Starsister) are. They're always shocked to hear I haven't had them since I was a baby.

And my collection of the world's handiest measuring cups/shot glasses is growing. I have 100s of them at home.

And I know hospital food gets a bad rap, but St John of God have always been a cut above. There's something about ordering and analyzing and dissecting the hospital menus that I just love. It's nearly therapeutic. I won't bore you all with pictures of bread and eggs, but here are some of the more notable things that've come up from the kitchen. I've also got a little stash of coffee and Vegemite and random bits 'n bobs in my bedside.
The biggest disappointment food-wise - a Caesar salad, though Caesar Cardini would be turning in his grave. I'm very picky with my Caesars. Unfortunately, this one had the wrong lettuce, plus grated carrot, tomato, red onion, and sardines.


Saturday, 19 March 2016

Outing #3

The other weekend I went out for dinner with the family - mum, brother, and his girlfriend. We went to a new Chinese place that just opened a few months ago.

Apart from my stupid manic trip to Melbourne to see the guy who left me unresponsive post-seizure, I went out twice last year. Once for my birthday when we went to Warrnambool, and once in August when we went out for dinner. So far this year I've gone out for dinner once and coffee once (more on that in my next post). I do appointments, I organize smoke, and that's it. I can't even go to the regular supermarket, or for a simple walk around the block.

For entrees (which I unfortunately didn't take photos of), we ordered steamed pork dumplings, vegetable spring rolls, satay chicken skewers, and sesame prawn toast. For mains, we had Mongolian beef, beef in black bean, and stir-fried noodles. I had half a spring roll and half a piece of sesame prawn, plus a little of the Mongolian beef and black bean with rice - plus a good half a bottle of wine.

Things fell apart at the end when, without going into detail, my brother mentioned the name of my abusive ex. I started attacking my arm under the table, and had to cover it with napkins and my coat on the way out. This led to a massive breakdown, resulting in me sitting in the garage with a knife to my throat and taking two weeks' worth of oxazepam, mum threatening to call the police. It was 1am before we got to bed. Needless to say, it was a bit of a disaster. It's not surprising I ended up in ICU the next day.

And just lastly, my lungs are killing me today. Mum and Brother have been sick all week, now it's my turn. So much so that even mum keeps saying I should be in hospital. O2sats were 87% with a fever of 39°c, but I'm freezing, everything hurts, I can't sleep more than a hour before I wake up coughing. Anything sitting in my stomach makes me want to puke.

Right now, all I want is to curl up under an electric blanket with Billy and Misty. If I'm still this bad on Monday, I might try to get into see my GP and get her opinion.

Apologies for the awkward photos. I've misplaced my tripod and remote, and 6'1" is a long way to bend down to take photos of my legs, hence my hair getting in the way. Please excuse my messy study.

Thursday, 10 March 2016


I hate leap years, with a burning passion. This year may just be the most painful of all. Excruciating. The 29th. It's now been eight years since my abusive ex first hurt me. Twenty years since I lost my father.

Each year I sit down with my manilla folders full of chat logs, photographs, old blog posts and poetry, and read through it. I read bits and pieces out to mum. It's a sick and twisted ritual, but it's sort of a way of grieving. I honestly believe I died back then, that he killed me. I'm not the same person I was before I met him. I don't even go by the same name.

I want to cry, realizing that since it's a leap year, it's eight years ago, and it never gets any better.

I've bounced back from last weekend's OD pretty well. The pressure sores are starting to heal and I feel less weak in general.

But after last weekend's fiasco, my GP started me on weekly Webster packs, meaning there's no extra meds in the house. It's sad. It was only a year or two ago that mum stopped hiding my medication - everything from paracetamol to antidepressants - after my big OD when I was 12 (which I'll write about, for the first time ever, later this month to mark 10 years).

I did okay for a few days, more or less. Then I had another big slip up on Tuesday with Webster pack #2. My week's worth of meds was gone within a couple of hours. Normally I take seroquel of a morning, lorazepam of an afternoon, and more seroquel and oxazepam before bed, plus seroquel and lorazepam PRN. I thought I was going to wake up in hospital again. I don't know why I did it. I just wanted to make the pain stop.

Apparently I saw Jo later in the day, but I don't even remember. I thought she hadn't had any gaps. I went back yesterday, scared of what she was going to say. Scared she'd stop the benzos and tempt me to take other crap in it's place. She said I'm pushing it with the benzos, but for now, we're trying daily dispensing.

Yesterday was day one, and it didn't take long for me to pop them all at once. Last night, with no meds, I only slept two hours after spending the night doing step aerobics and marathoning Dr Phil. This morning she gave me the week of PRNs at once, and they were gone in one gulp, so now PRNs are to be picked to daily too.

She also said she's worried about my calorie intake, as my weight's been dropping consistently again for a while now. I'm having supplements pretty much daily, and it's still not enough. Although it's agreed it's the dietician's domain, not her's, not the psychologist, who I'll be meeting in a few weeks. In fact, the new psych doesn't deal with EDs at all, which is a blessing. She agrees the ED psychs go too hard and fast, and it simply doesn't work for me.

I've been texting the dietician these past couple of days. On Monday I didn't know what else to do or who to turn to, so I asked for her help. I didn't see her yesterday, partly to avoid being weighed, but I'm tried to get in to see her this afternoon. She usually has a couple of cancellations, but no such luck today. It feels like she's the only one I can talk to and who puts up with my crap.

I'm at a point where I think know I need support with my smoking. I just hope this new psychologist my GP has in mind will be able to help.

So that's about it for now. I just wanted to give you all a quick update, since I now suck at posting at least once a week.

Thank you guys for all your support, always. I honestly don't know where I'd be if not for the blogosphere.