Beyond Repair

Winter has well and truly set in this week.

Tuesday morning, it was 6°c and pouring down rain with gale-force winds. Everything was making me cry. Getting dressed was a nightmare. Trying to find something different but settling on the same old trackies-and-hoodie, looking at clothes and clutter everywhere and getting angry at myself for taking up so much space. I found my weigh-day shoes (they only weigh 172g!) soaking wet on the back porch and I just started crying 'fuck it all' over and over again. 

Mum kept asking if I wanted to cancel my appointment with the dietician, but if I don't go, I don't have much other routine in my week. Thankfully the clinic is only about 500 meters down the road, so I still made it there on time.

I went in with my face red and puffy and cried all through the appointment. My intake's been strange, anywhere between 500-900 calories. She asked if I'd been doing any cooking and I told her that no, I'd been lazy, to which she said "you've been resting". But seriously. My intake on the day mum was away, was a glass of iced coffee flavored milk (190) with my morning meds and a slice of my brother's frozen pizza (215) for dinner, plus my usual coffee, Coke Zero, etc.. Things that are never a part of my diet, simply because it was convenient and I couldn't be bothered fussing with much else. Sigh. Disgusting. 

I only exercised once that past week, for half an hour on the step. I've just been totally exhausted and haven't felt up to it. The dietician said that I shouldn't be exercising at all, that I need rest, both mentally and physically. I told her that the Lung Doctor Man/specialist said I should be exercising. Then we got into a discussion about the definition of 'exercise'. When I last saw the specialist in November, he asked about what exercise equipment I had (like a treadmill or exercise bike, he said - I have an elliptical) and instructed me to use it for half an hour "in front of the TV" each day. I think that's pretty clear.  

She went on to say we need to look at the big picture and take care of my mental health as well as my physical health, and gave some analogy about wrapping me in cotton wool. I hysterically burst into tears again, saying that in November the specialist said exactly "we can't keep you wrapped in cotton wool".

She's told me to have the week off exercise, to try to be kind to myself about it, and we'll reassess next week. I see the specialist the week after, and I'm dreading what he's going to say about it. Don't get me wrong, he's a brilliant physician and he does try to understand my MH issues (let's not forget, he's the one who got me on lorazepam), but we clash when it comes to exercise. I made a three week plan from discharge to get my exercise back up to 2-3 hours a day by the time I had my checkup, but I never made it past two days. I did half an hour yesterday, just so I could say I've done something, but I physically couldn't manage more than that. 

The next day I saw the Mental Health Nurse. I felt like a major waste of time because I just couldn't talk. I think the most I said was "I just feel very low". She asked why, what triggered it, but there was just nothing. I kept my eyes fixed downward and held back tears, letting out frustrated sighs, shifting in my chair, running my hands through my hair over and over again. She said I looked more 'alive' in hospital, that I didn't look well, and she hoped I wasn't getting sick again.

I left after maybe fifteen minutes. The next morning I made an appointment for the following week. I think maybe I need to see her earlier in the day, not at 4pm when I'm so exhausted. I just feel so disappointed in myself. I'm at the end of my rope. When I wake up in the morning, I don't know how I'm going to make it through the day. I need to be able to talk but I couldn't say more than a few words. 

This morning I woke up crying before I even got off the couch. I just want to sink into the floor and disappear. 

To top things off, my laptop, my Alienware, is dead. Completely. Components have melted, beyond repair type-dead. I am devastated. I don't use it a lot (I'm mostly a smartphone blogger), but I'd started using it again in hospital and it was helping to give me a distraction. I bought it maybe four years ago when I was super into gaming, but I've barely used it for two. The hard drive's being retrieved but not guaranteed to work, and to be honest, I'm not holding out much hope. PSA: backup your computers, ladies! (because this moron sure didn't)

xxBella

The Nothing

"It's the emptiness that's left. It's like a despair, destroying this world." - The Neverending Story


It's been a pretty long week. I've just been settling back into being at home. I feel totally overwhelmed by everything. I wish the world would just stop for a moment and let me catch my breath.

I saw my GP on Thursday. A lot of it was just catching up on the hospital admission and treating self-harm wounds as she hadn't received the letter from the specialist yet. It's three weeks today since I was admitted. I've still been feeling not-quite-right. The cough, fever, congestion, pain, headache, sweats, utter exhaustion have sparked back up again, though it's still no where near as bad as it was.

She said that both she and the Lung Doctor Man understand that smoking, both substances, is a complicated issue for me and neither expect me to be able to 'just quit', which was great to hear. She recommended to take things one cigarette at a time for now, and if I can go without one or stub one out halfway, great, but not to push myself if it'll just make my mental state worse.

We talked about how she and the dietitian and the mental health nurse all came to visit, and I think all agree it was definitely a good idea for the MH nurse to visit because it really opened up the line of communication.
"I think now you might know that we do actually care about you and really want to help you, that you're not just any patient who walks in."

I nearly started crying. I've never had any doctors, therapists, psychiatrists, anyone actually care about me before my current team. 

Mum went away over the weekend. I ended up smoking too much and didn't sleep. I've been having more and more sleepless nights lately. The night was spent re-watching the same old movies for the millionth time, cuddling with the cat and dog, drinking too much coffee and periodically bursting into tears. I made sure to spend some time yesterday catching up with all your lovely blogs, because it's just been too much to face some days and I've fallen behind on reading and commenting. At the moment I just can't bear to be in my head. Life is fucking excruciating, waiting for time to pass. There is just nothing. It hurts to think, to feel, to breathe.

I'm trying to take things one day at a time. It seems to be my motto lately. As for this week, I'm seeing the dietician tomorrow and the mental health nurse on Wednesday. I really don't know how she's supposed to be able to help, but I've got nothing to lose by talking. I'm hoping my GP will consider trying another antidepressant soon. I don't know how much longer I can keep doing this. I'll try to update later in the week.


"A strange sort of Nothing is destroying everything."


xxBella

Home

I've been home for a few days now. They discharged me on Thursday, after eleven days in hospital.

I'm still feeling very weak and just generally exhausted, but I'm a lot better than I was two weeks ago. The infection is clearing, I'm breathing easier and in a lot less pain. Not better, but getting there. It's surreal, and a bit scary, to think of how physically sick I was when I was admitted. 

I'm on another course of antibiotics (hopefully the last), the prednisolone is being reduced and I'm not on as many painkillers. I'll be seeing The Lung Doctor Man in a few weeks for a check-up and to test my lung capacity etc., and I see my GP next week. After all the tests from the bronchoscopy, they found a bacteria which was likely the cause of this flare up, but nothing too serious. There's that sick part of my mind that was hoping for something more sinister.

Being in hospital was torture as far as agoraphobia and other anxieties go. I was literally dropped into the middle of the CBD in a totally unfamiliar environment, and it got pretty terrifying at times. Most of the time I was too terrified to leave my room (thank god my insurance covers private rooms). My daily walks, once allowed, were the 50-odd meters to and from the tea & coffee closet - but only during times the halls would be quiet. The thought of going down to the 'busy' foyer (it wasn't really busy, in reality) to buy a can of Coke Zero from the vending machine was too much, and so mum would get one for me on her way up. Whenever I did get out of bed, the nurses would gasp at my height, saying they didn't expect me to be so tall. Nine times out of ten, this was followed by the obligatory "You should be a model!" comment. Smile, laugh, nod.

The staff were all wonderful, especially the nurses and pastoral care. They mightn't be trained in mental health, but they really do their best to understand when I try to explain that I'm one of those weirdos who literally doesn't leave the house. Apart from medical appointments, I've only left the house four times since the start of the year. I am so, so scared, of everything.

The first thing I did, the first thing I always do after being discharged, was smoke. Two cigarettes inhaled during the 10-minute drive home, then I shrunk into my armchair with my pipe and blasted off into eternity. It's the only thing that stops me feeling so completely overwhelmed all the time. Eleven days clean was enough. I haven't had a break this long for... since ED inpatient, three years ago.

I had great plans for exercise when I first came home, but my body can't keep up with my head. Maybe it was pushing it a little hard to expect daily exercise, starting immediately. I still feel so weak after being in bed for eleven days, not to mention the lack of activity in the weeks leading up to admission. On Friday I managed 15 minutes of step aerobics plus 15 minutes cardio boxing on the Wii, which was refreshing yet exhausting, but slacked off over the weekend. I did 20 minutes on the step earlier today and I feel totally wrecked. I use a pedometer to calculate my steps per minute, and in that regard I've definitely slowed down, but that's to be expected I guess. It's just disappointing because even though no amount of exercise is ever 'enough', I can't even come close right now.

My dietician came to visit me in hospital on Tuesday afternoon, which was amazing. It's always strange to have Tuesday mornings without her. She'd asked mum for my phone number in the morning, but even texting has been a struggle lately and I just couldn't do it. Instead she came in to visit quickly after she'd finished work, and it made a horrible day a million times better. I was supposed to have a proper appointment with her on the day I was discharged, later in the afternoon, but I physically couldn't get there. Walking out to the car left me coughing and breathless, and I just couldn't do it, but it might've been pushing it anyway. I see her tomorrow for our regular appointment anyway, and it'll be so good to catch up. I haven't seen her since the 27th - that's three weeks!

I'm a hoarder at heart, and one of the things I refuse to throw away is pill cups. Over the years some have been damaged or lost, but I try to keep as many as possible. They come in so much handy, especially for measuring and weighing food.


xxBella

Sealed lips & 1,200 days

I had my first 'proper' appointment with the mental health nurse yesterday. From our introduction, she'd caught onto the fact I'm not big on talking, so she's trying to work around a lot of the typical 'talking' stuff, which is nice I guess.

I was kinda zombified through the appointment, in silence until I started to inexplicably cry toward the end. We listened to a mindfulness/meditation track; not to follow along with, just to listen and give me a better idea of what ACT's about. It was fairly long and I zoned out for a few parts, but the I got the gist and I guess it seems like something I'd find applicable. She recomended a few books and CDs and things, and she's going to bring a book to lend me next time. I really didn't talk much though. It was a struggle even when spoken to, and I just sat there hating myself for being so rude, but I couldn't talk.

She talked a bit about general stuff, hobbies and things like that, but even then I couldn't find words. It's so much effort to talk at all when all I want to do is disappear. I know I need to be able to talk. I want to be able to talk. I just can't. I need to be able to break down to someone and cry and say "I can't get through each day, everyday is fucking unbearable, it's all too much, I just want to disappear and I don't know how much longer I can cope with this and I don't know what to do". My GP said the MH nurse would be just like a friend to talk to, but she seems very ACT-focused, so I don't know.

I don't know. Me being me, I need more time to think and 'process' it all. Right now, I actually still feel kinda down about it all. I always set my hopes so high, that one appointment will be the start of things improving, but I know it doesn't really work that way. As a result, I end up leaving feeling worse and more hopeless than I did before. Each day is such a struggle, I don't know what to do anymore. My next appointment probably won't be for another month or so, as I've got GP appointments and The Lung Doctor Man and I really try to avoid having more than two appointments in a week (including the dietician), and I still need to book my bone scan.

I've been so focused on distracting myself and getting through until Wednesday, but now what? Where's the next distant glimmer of hope that things might actually improve? What am I 'just getting through' until now?

I've reached a point of apathy where I'm just waiting for the day to end, dreading the next one starting, and there's nothing I can do. Everything feels so hopeless. I don't want to have to be a part of the world. I want to put my hands over my ears and go 'lalalalala' and ignore the outside world. I want to hide away and slowly fade off into the background. I want the ground to open up and swallow me whole. I simply do not want to deal with reality and existence and the world right now. Hence I've been so awful at keeping in contact recently (sorry).

There've been a few nights this past fortnight where I haven't been able to get a wink of sleep. I don't know why. It hasn't happened in a long time but the sleepless nights and endless days are creeping back in again. I spend a few hours doing needlework, or watch crappy late-night TV shows, or just lie there and stare at the ceiling, suffocated by thoughts and fighting the urges to self-harm. By the morning, I'm hysterical, wide awake and near-manic, tears running down my face, sweating, buzzing. I'm not coping with lack of sleep anymore. It just highlights how hopeless everything feels. The days are too long as it is, and all I do is wait for them to be over, but there's no break, no end, without sleep.

Things are just not good.

My chest infection still hasn't cleared up, and if anything has gotten worse, which isn't helping with my sleep either. Last night I slept, but woke up every goddamn hour, coughing and spluttering. My brother recently caught a cold that turned into an infection, so now I may be developing a cold onto of my infection, which is marvelous. I'm just tired of this infection and not being able to do much - it's been well over a month since I started feeling sick. Mum wants me to see the GP this/next week, so I'll see how I feel on Monday

To finish on a brighter note, although I haven't been sewing while I've been sick, I've been doing a fair amount of needlework to keep myself distracted while stuck on the couch. In an effort to convey to you the amount of work going into this tapestry, I've been logging hours and taking progress pictures every ten. I've up to 32 hours, 40 minutes, and I started on May 2nd, although I certainly haven't worked on it everyday. If you care to look closely, you'll see which parts have been completed and where's 'empty'. That is my apparent progress. The whole picture only shows abut a quarter of the full tapestry, eep.

Also, I forgot to mention a few weeks ago that I reached a 1,200 day streak on MyFitnessPal. As of today, I'm at 1,228 days in a row. Any challengers? Seriously though, I would be devestated if the streak were broken and I had to restart from zero. The things that really matter, right?
(Apologies in advance, but I don't really use it as a social thing, so there is a 100% chance I will decline friend requests, sorry.)


xxBella

Cheeseworld, and other ramblings

So we ended up doing a trip to the cheese factory on the weekend. It'd been a long week and mum thought it might help lift my mood a little to try getting out, though it turned out to be a bit of a disaster. Excluding medical appointments and going for drives in the car, it was the fourth time I've left the house so far this year (quick recap: I went shopping in January, did a bushwalk in February, and got a piercing in March). I was only out of the car for maybe five or ten minutes, but hey, it counts.

We were planning to have lunch in the cafe, but I ended up panicking when we were looking at the menu and escaped to the car with a Diet Coke while mum bought the cheese. There were too many people, too many food options, too many items currently unavailable. It didn't help that my stomach's been iffy since I've been sick, so I've been sticking mostly to fresh-and-fruity or plain-and-dry foods or liquids, of which their display was lacking.

We didn't go into town or anything, and just headed straight back after getting the cheese. My mum is fairly addicted to this cheese, so we end up doing a day trip to the factory outlet every so often. Just down the road from the factory, mum pulled the car over and I cried and rambled hysterically for a good half hour, then curled up and sobbed for the first 90 minutes of the two and a half hour journey home.

The rest of the week hasn't been much better. I realised I really can't wait six weeks to see the mental health nurse, and made an appointment for next week instead. I don't know what I'm going to say or what I'm even expecting to come from it, but I'm heading towards a crisis and I'm desperate. I don't know what else to do. It'd have been this week, but I struggle enough with two appointments in a week, let alone three days in a row.

The more I think about it though, the more she's right. I don't know how to live in the now. I'm too busy worrying about the future or moping in the past, and it leaves me too overwhelmed to function. It's paralysing. I'd never thought of it that way before, but maybe I wouldn't feel so overwhelmed all the time if I could actually deal with things at the time.

From the moment I wake up, I'm just waiting for the day to end. I feel so overwhelmed by everything. By life, the world, reality, the hours on the clock. Each day is too much, too unbearable. There is so much I should be doing and I can't do any of it. I'm stuck. I spend hours upon end crying and rambling and repeating myself that it's all pointless, nothing is okay, that I can't do it anymore, it's all too much, oh god, it's all too much. There is nothing to hold on to, nothing to look forward to, nothing to get me through my days, and I don't know what to do.

The GP was Monday.  My chest infection is still hanging around. The painkillers are helping with the bad fevers, but that's about it. She's given me another fortnight on antibiotics and a month more on prednisolone. I'm just tired of feeling so sick. The oximeter was being glitchy and reading my oxygen sats in the 70s, which it most assuredly was not. My checkup with The Lung Doctor Man is coming up in a few weeks, though I can always try to see him beforehand if things get worse.

Sorry this post has been so all over the place. It's been a long week and it's hard to get my thoughts together right now. For now, I think I'm about to return to the couch and finally watch this 'Starving in Suburbia' movie I've heard so much about lately.

8kg (17.6lb) of vintage cheddar - 2kg were for a friend of mum's, though. It's not a great photo but it's four blocks high, 500g each. The 2kg blocks are too difficult to shave so we didn't get any this time. That's somewhere in the ballpark of 32-thousand calories.


xxBella

It's Time to Talk

I met with the Mental Health Nurse for the first time today, after putting it off for the last six months.

It's been years since I've seen anyone with mental health training. The last time I saw a psychiatrist was three years ago, when I was sectioned. I haven't seen anyone regularly and willingly in even longer, since before my ED. Between the last psychiatrist being nothing short of cruel, and the fear of being sectioned or hospitalized again, I've kept as far away from MH professionals as I could. It took a long time for me to even trust GPs again - I hadn't seen one for years until after I started seeing my dietician. But I understand it puts my team in a hard place, and my dietician and GP have been amazing to've seen me for nearly two years now without any MH support.

It was just a quick appointment, maybe fifteen or twenty minutes, and my GP was there too at the start. It was very much a 'get to know you' appointment, to be continued in a month. I sucked at talking, as usual, and kept my eyes firmly fixed downward. My GP started by talking a bit about my history over the last ~18 months. The MH nurse asked about diagnoses and I mentioned anorexia, anxiety, depression, C-PTSD, agoraphobia... I really wasn't keen on talking, so she and my GP were just going to have a better look through my file. 

She did give a good analogy though. Basically, she was saying that with anxiety your mind's constantly worried about the future, and with depression you're set in the past, and either way it stops you from living life in the moment. She thinks ACT (Acceptance and Commitment Therapy) and mindfulness could be helpful to bring me back to the now. I learnt a little years ago, in non-ED inpatient, just things like stopping and listing all the sounds you can hear, but I've never really known how to apply it. So she might be onto something there. 

In sickness news, the antibiotics don't seem to have helped much at all, and today's my last day on them although I'm on prednisolone for another week. I still feel as congested and phlegmy, I still feel as feverish and exhausted as before. My temperature was back up at 39°c last night although the nausea hasn't been too bad. When I saw my GP last week, my oxygen saturation was up to 96% which is actually a considerable improvement from 95%. Overall I haven't declined but I haven't improved either. I'm seeing her again next week, but I don't think it's worth seeing her earlier unless the pain/shortness of breath gets worse. 

Oh, and I'm finally coming off the Zyban (useless antidepressant) in the next week, and my Mirtazapine's back up to a full dose, although that doesn't exactly help either. I still don't know if there's plans to try different antidepressants or not. Again, it's difficult when I haven't seen any MH professionals for so long. I don't know.

My dietician still doesn't want me exercising which is really getting to me. Without it, I've been smoking even more to try to drown out the anxiety, which is kinda counterproductive. But I've barely exercised for nearly a month now. I haven't weighed myself for two weeks because I'm too afraid to. I'm already dreading how hard it'll be to start exercising again after such a long break, but c'est la vie. 

I'm actually kind of itching to get out of the house, after not going out during April. It's been six weeks since my piercing! Mum's planning a day trip to the cheese factory soon (last night we apparently ran out of the 6kg/13lbs of vintage cheddar we bought in December), so I might tag along if my chest clears up. If not, I'd still like to do more bushwalks. We're already halfway through the month though, and I would like to at least try to get out and about. 

xxBella

Appointments and Tapestries

First off, thanks to everyone for the birthday wishes! I ended up having just one glass of wine with dinner and was asleep by eight, but hey, it happens.

The dietician was absolutely lovely this morning. She gave me a birthday present, a new journal and some scented soy candles, and on Thursday I actually got a happy birthday text from her via the computers the receptionists use to send appointment reminders. Words cannot even express. She is just wonderful.

I was dreading getting on the scales. I haven't been weighing myself this week but I was sure I'd gained. I haven't exercised at all for over a week and had a slice of cake nearly every day, but my weight actually dropped a little bit. I was speechless. 

The GP was really good on Thursday. Before I even spoke, she asked about my chest since my breathing sounds awful. She said I should've made an appointment when I first started having troubles, even if it was with a different doctor. My oxygen read 95% which isn't terrible but isn't good either. I've got two weeks of antibiotics, a week on prednisolone (a corticosteroid, to reduce inflammation), painkillers and a puffer every four hours. She said I should've started taking the leftover prednisolone and had the antibiotic scripts I was given a year ago filled, especially if I was seeing her in a few days anyway. I know she says I can, but I always hesitate, because I don't know for sure when I should start taking them.

I'm seeing her again this Thursday, though she said she can squeeze me in if I need to see her beforehand. Yesterday we called and she gave me a script for stronger painkillers which seem to be helping a bit. If my oxygen doesn't improve or the pain gets worse, she thinks a few days in hospital could help. Good thing I got my health insurance sorted last week, right?

Sorry it's taken me so long to update, I have zero energy at the moment and really haven't been online much. I've been keeping up with reading but I know I haven't been commenting as much as I usually do.

Also, my new project; a bloody massive tapestry (it's about 36" wide). Mum did Shearing the Rams (below) years ago, and bought this one at the same time but never got around to it. So I've started it, but don't expect to see it finished any time soon. I still haven't finished my sewing project yet, but I haven't been able to do much stuck on the couch.

*A quick catch-up for those of you who are newer readers; last May I was hospitalized after having a chest infection for quite some time. I was referred to a thoracic physician (more commonly referred to as The Lung Doctor Man) who diagnosed me with Chronic Obstructive Pulmonary Disease and Bronchiolitis, so chest infections can be kinda dangerous.

(I put this at the end because a lot of you will've read it ten times before, sorry.)

xxBella