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.



  1. I don't think your mum is tired of you. I think she is probably terrified. Between the lungs and the serious weight loss, and the recent hospital visits, it has probably crossed her mind that she might lose you sooner rather than later. I obviously can't speak from experience, but I have loved ones who have lost children--both to accidents and illness--and I do not doubt that losing a child is one of the worst things that can ever happen to you.

    I'm not saying this to be harsh or mean; just trying to convince you that mother will never get tired of you. You're her daughter, and no matter how tough things get for both of you, she'll still love you.

    Holy crap, that looks mighty good for hospital food.

    I hope you can find the will and the strength to get better. You have so much talent and so much to offer the world. You're a bright shining star, none of want your light to go out. <3

  2. Bella it breaks my heart to read how poorly you are. I'm thinking of you so much and keeping you very much in my prayers. Please keep fighting. Please stay strong. Sending you love and hugs and strength and hope xoxoxoxox

  3. hopefully i didn't say anything to offend you, love:

    what? 75%? my head is woozy just reading that number.

    "How old are you?!" <--basically how i felt like when you told me you had COPD/bronchilitis obliterans. since the age for that is usually 40-50 and that's in a chronic smoker that's been doing it since they were teens. and even 40 is like "oh, you're young." Beellllaaaa.

    PS. i just finished a COPD lecture and every time they mentioned bronchilitis obliterans, i remember the Harry Potter spell comment. and then laugh.

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

    "further thickening of my bronchiole walls" BELLA NO

    hate to say this, love, but he really is right. "but it won't change where I'm headed unless I start making big changes" this. i know you're not mentally in the right head space but it is true. your body is so fragile and it's been under strain for a long time. the last few posts. i think most of your posts recently are "hospital admissions. seizures. etc" and it's hard to read them but it's even harder for you, because you're living it. this is effecting you. this is effecting people around you. and you deserve better. you really do. you deserve so much better than this.

    i don't think anyone can force you to do anything. that's the thing about it.

    nobody can force you to eat more. or force you to smoke less. or force you to do anything. and seeing from what people are doing so far, they really aren't doing much.

    that actually makes me feel so sad that your weight is so low. your weight has always been low, but honestly, the thought of it getting any lower is frightening. the thought of you staying at the same weight for me is frightening. i want to tiptoe around that comment since it's a sensitive subject but i feel like i really have to say it.

    "but apart from smoking, weight loss is the only thing that'll help me feel better right now." sweetheart, you do not have any weight to lose. i'm telling you this right now. don't let that eating disorder make you this way. it is not true. you are so much better than that.

    it really hurts me to see how poorly you are doing. and the nightmares can't be any fun either. it's just sad to see you like this.


  4. mum is not tired of you. i second everything that Mich said. every single thing.

    "This morning, The Lung Doctor Man said my chest is sounding a lot better." thank God for that. Bella, one day, you might give me an aneurysm.

    "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."

    nothing is definite. /nothing is definite./ it'll be hard. it'll be hell, but you're strong as hell. if there's anything that your history and all these posts and all this ruckcus that has happened has told me, your body can take a whole lot. i don't normally advocate recovery and those notions here. i still remember those posts that you make where you mention how you struggle with the idea of taking anything that can benefit your body. but you need to. i think this isn't a "oh, you're well on your way". i think this is "oh, you're well on your way if you don't change something now."

    but you should. you really should. i mean it's one of the hardest thing anyone has to do, but i don't think you have a lot of options right now. i think that it's like a slippery slope. i can't tell you what to work on, but honestly, the first thing i'd tell you to fix your food intake. that you need to cut off that line that ties you between you and your ED. it'll make everything else worse, but it's better than living in a static or in a place where everything seems to be closing in. either way, in my head, they're going to be bad anyway, but you can do it.

    you have had terrible, unforgivable things happen to you. you've been through hell and back, but that doesn't mean it has to take your life too. your life is precious. the possibilities in it are precious. it doesn't seem so now, but it is.

    nothing is definite. really. nothing is. you can do this if you like. if you want, i'm always here to support you. i know you've mentioned not being able to talk a lot and what not, but i will always be here for you. i know that you can get better. i have no doubt. and like i said, i will always have enough hope for the both of us.

    i do not want you to suffocate, Bella. you are a special human being. you deserve to live and you deserve to break free of this.

    i'm pretty much available for you whenever you need me to. i will be your support system if you want someone to be there. you need a lot of help to get up, but it doesn't mean that you can't get up.

    keep fighting, love. there's a light at the end of the tunnel. promise.

    -Sam Lupin

  5. hi lovely. just wanted to say i'm thinking of you.

  6. So sorry to read this Bella
    I'm on my way out the door
    But I will email you when I get back
    Apologies for this short comment
    But I am here
    Rooting for you
    And praying you get well x

  7. It has been such a long time,
    You probably don't even remember me...Kay (nursing school, recovering from anorexia/bulimia, last year i had a blog but was going through a rough patch with my boyfriend & relapsed and ended up deleting my blog so I could focus on myself and my recovery again) I don't think I've had an account on here for nearly a year now, maybe longer, anyways.... for some reason, I randomly thought of you and Ruby. I used to religiously follow your blogs and always loved reading them, whether they were positive, negative, or anything in between. Anyways, I haven't read your blog since I deleted mine a while ago....
    I wanted to say I'm so sorry you're going through such a rough time. If you don't remember I was in nursing school, (I still my senior year now) but I am working as a nurse extern on a general adult medical unit and I see so many respiratory illnesses whether it is pneumonia, COPD, whatever it may be. I've always thought those were so scary, the feeling of not being able to breathe terrifies me and I'm sure it's even scarier for you since you're the one going through it!
    I know it may not be much coming from a stranger that you talked to once upon a time, but the reason I thought of you in particular was because as I said, I always loved reading your blog, and I find you such a fascinating person...I thought today, "I wonder how she is doing....I wonder if she is alive" and as negative as that may come off, please take it in a positive way. I found myself scared...because even though we may be strangers and just fellow bloggers a while back, I found myself sad that I might find your name on here and click your blog and not see any posts for a while. It was such a scary thought to think you might be gone because you were fragile last time we spoke...
    For a total stranger to care about you in this way and scared for your well being, You should absolutely know that your mother cares for you so much deeply than anyone else does. Your mother loves you and she is probably so scared to lose you.
    No one can make you get better, you must want it for yourself, and everyone will continue loving you even if you don't want it. I just wish you could find some type of peace in your life. It saddens me to see your health deteriorating. Whenever I read your posts, you nearly always post something positive about another person... even just commenting that you find the nurses and PSAs very nice....You have so much love for others, I wish you could transfer some of that love to yourself.
    Anyways my rant is over. I just wanted to let you know that some total stranger over here in the U.S. was thinking about you and CARES ABOUT YOU.

  8. Sorry to hear of all of your medical issues. You are killing yourself slowly but surely. I hope you find the will to live for yourself and for your family. Your life matters. You have to take care of it.

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  10. I don't have a lot to say, but I wanted to say something. I hope this goes well and your lungs improve. I hope everything gets better. I feel attached to those whose blogs I follow. I care and want happiness for you. Let me know if I can be any sort of support. You deserve so much
    And sorry I wrote this once and deleted because of a typo.

  11. My gran has COPD, and struggles with recurring pneumonia, but she's almost ninety. You are too young, too lovely. Be careful. That's all I can say.

  12. I think the first step is you have to want to get better. We all want you to want to. This is all so scary, and I think it puts into perspective how sick you are sweetie. I agree with Mich about mum, and Sam about the unspoken words of "if you don't change anything".

    I agree on instant coffee tasting awful after ground. It's funny, my mum considers herself a self-proclaimed 'coffee fiend' yet she only likes instant and only Costa when she goes to a coffee house. I have one jar of instant coffee for friends who come round and can't comprehend that there is currently 6 or 7 different bags of ground coffee and bean plus 5 types of Tassimo T-discs. "I just want a coffee!" is something they've wailed too many times in the face of choice- so sod it, they can have shit coffee then. xD

    I'm pleased you've cut out the cigs whilst you've been in- I think stopping those and the synthetics would benefit you the most, but addiction is a very real thing. I hope the hospital give you help with those. And it's great that they're treating you the way they are without a psych.

    Love you <3 xxx

  13. Oh Bells, I am so worried for you! I hope you are able to go back home soon where things are safer(?) or in any case more familiar. And I'm really really hoping you won't need the current coping mechanism as much when you're back home. I love you and think about you often! xoxox

  14. Are you alright lady Bella? You've been quiet a while.

    Luv u <3

  15. I am sorry that you are suffering from pneumonia. I have been in the hospital with the same thing, and it's not fun. You are right in that the nurses and the doctors seem to ask some of the oddest questions about your health when you're sick and seeking help from them.