Saturday 6 January 2024

The Days are Long, But the Years are Short

  The New Year has rolled over, and I find myself feeling uncertain about what 2024 will hold.

  Next week, I have a brief hospital trip for the long-postponed removal of my impacted wisdom teeth. Because I'm a lonely loner, I get a little overnight vacation at the hospital, because I don't have anyone to stay with me to supervise for 24 hours after coming out of the anesthesia.

  I know that it would have to be done at some point, but I'd be lying if I said I wasn't tempted to put it off further, until they started causing serious problems. I'm a little apprehensive about the general anesthesia, and the pain afterwards. But my biggest concern is that I'm incredibly mentally uncomfortable with the concept of having four gaping holes in my mouth. Even thinking about it sends chills down my spine.

  I'm stocked up on all forms of liquids for post-surgery, from clear to full. I've got sugar-free jelly in five different flavours, plenty of skim milk for iced lattes, 45-cal hot chocolate sachets, my favourite vanilla yoghurt, sugar-free Zooper Doopers (I think most of the world calls them 'freeze pops'), and I'm sure there's some ice cream lurking in the freezer. I've plenty of broth cubes - both chicken and beef - as well as some potato & leek soup. It's been a few years since I've done more than 48hrs on liquids alone, but I'm going to try to make the most of it by seeing it as a little break, obligatory, from the constant thoughts of food.

  I've also organized pre-prepared scrambled egg mix, and low-carb mashed potatoes, for when I'm able to get back to soft foods. But at the moment, the mere idea of having four giant wounds in my mouth, stitches, blood clots... I might be working myself up to think it's worse than it really is (and if you guys have done this before, I'd love to hear from you, as I've not found much specifically about EDs and dental surgery online), but I'm not sure how much liquid I'll even want to put in my mouth.

  In the last few days, I'm also becoming increasingly nervous about the possibility of dry socket. As it stands, I've been smoking cigarettes for over half of my life. These days, around 40 a day. The first 24 hours will be easier, because I'll be in the hospital, but it's going to be hard to resist once I get home. I'm planning to grab some nicotine patches, plus some mouth spray if the surgeon says it's okay. When I've used them in the past - mostly during sections when I wasn't allowed to step outside of the hospital room - I've always used a combo of patches and inhalers, but any suction is a no-go. Even then, they've barely touched the sides.

  I've scrounged around online, reading about other people's experiences of smoking after dental surgery. I think I will actually follow the instructions for the first couple of days, because reading about others' experiences with dry socket has definitely put me off. But oh man, it's going to be rough.

  I know that the general consensus from society as a whole is 'what a great opportunity to quit!'. But frankly, if being diagnosed with COPD in my early 20s didn't push me to quit, and neither did watching my mum go through lung cancer, I don't know if it'll ever happen for me. Over the years, I've overcome addiction to weed, synthetics, and as I try to knuckle down on giving up the booze, I lean especially hard on my cigarettes. I'm only human, and surely, I should be permitted one vice.

* * *

  In other news - just before everyone went on break for Christmas, I got my new NDIS plan. Apparently my (now-former) Occupational Therapist refused to write a report for my review, and no one seems to know why. Without it, there's 'insufficient evidence', and my funding has been decimated. My support worker, S, who I usually see four times a week, has been cut to twice a week. My fortnightly psychologist appointments? They're now once every three months.

  There's a whole appeal process going on, as well as finding a new OT. But in the meantime, I'm terrified at the prospect of losing such a large amount of support. Aside from the practical issues, it would be very isolation, to say the least.

  I'll still have my dietitian and GP every two weeks, sure. But adding on my GP retiring at some point in the next year, it feels like 2024 might be the year that my support worker crumbles.

* * *

  I hope everyone is having a wonderful start to the New Year. As for the holidays, the less said about that, the better. I got through. You think I'd be used to it, being my third year spending Christmas alone, but it doesn't seem to get any easier.



Sitting in the backyard with a good coffee,
 a new book, and Marty the Emotional 
Support Demon (it's short for Martholemew)


  It's only taken me two years to get around to buying a copy of The Opposite of Butterfly Hunting. I'm about half way through, and so far, I'm mostly enjoying it. It's a nice break from cycling through the same old ED memoirs that I seem to re-read at least once a year.




xxBella

Monday 27 November 2023

My First Tattoo, and Missing That One Person

  If there's one thing about me, it's that I'm terrible at making decisions. I don't think that this is particularly uncommon - especially for people with eating disorders - but I'm a bit of a perfectionist, and I have a tendency to fixate on details, no matter how insignificant they might seem to others. In all aspects of my life, I struggle with wanting to constantly refine things. 

  And so, I've put off committing to tattoos, despite wanting them for as long as I can remember. Even when I know exactly what I want, I worry that it won't be perfect. And I have to be able to accept that part of it is out of my control. But I see how my body looks as a reflection of who I Am, and it feels like a big risk to allow an outside force to influence that.

  But this, this was an easy decision. Several ideas for a memorial tattoo had come and gone over the past couple of years, but in the end, this was a simple but meaningful design for my first tattoo. I was nervous that they mightn't get it perfectly right. But I figured that the simplicity would give me the highest chance of satisfaction, and my want for a memorial on my skin overthrew the worry of imperfection. I had to throw caution to the wind.

  One of the few samples of my mum's handwriting, harvested from a card from my 7th birthday, buried in a box amongst a pile of old paperwork that should've been shredded long ago, crinkled and water damaged, unearthed as I went through the lengthy process of organizing and packing up her house after she passed. As soon as I found it, I knew. I put the card straight in to a zip-lock bag, hoping to protect it from any further damage from the flooded environment, and carpets slowly fermenting mold beneath the surface. There was nothing to refine, or perfect. I didn't have to stress over the proportions of a cancer ribbon, the font of a date or text, or the minutiae of a specific design. Just where on my body to put it - not somewhere it'd be visible to the world 24/7, but also not hidden to the point that it'd be difficult to view.

  I've had the tattoo for six months now, and I'm still in love with it. Mum is never far from my mind, and the rollercoaster of grief continues, even two and a half years later. Along with her necklace, originally a gift to her from my dad, older than I am. She never took it off, and neither have I.

  On the day she passed, we already had what clothes she wanted for the funeral, folded neatly, sitting on the desk of the hospital room - even her favourite comfy shoes. It seems so morbid, but she knew what she wanted. We knew that the funeral home would take care of her jewlery, etc.. But this necklace was so important to her, it's hard to put in to words. Although I never thought to ask her specifically, I think it may have even been more important than her wedding ring. It was her comfort, her never-ending link to my dad, especially after he passed. Before we left, after sitting with her for hours, I carefully unclasped her necklace, and put it straight around my own neck. Things like her earrings, or her wedding ring, were not of such large importance. But her necklace was the one thing that we were unwilling to trust to the funeral home.

  But now, with her handwriting inked into my arm, I will always have that physical link to her. My tattoo, and her necklace, are just some of the small ways that I keep her with me. No matter where life takes me, no matter where I am - she'll always be close to my heart.


  For the past few months, I've been running on about 4 hours of sleep most nights. About once a week, I will sleep a more normal amount, usually after I've had a few drinks. My GP put me on prazosin, which is supposed to help with the C-PTSD nightmares, but so far it hasn't helped. It just tanks my blood pressure (the last time I checked it overnight, it went from 109/69 sitting, to 56/43 standing), and as such, she is hesitant to raise the dose any further.

  When I do sleep full nights, I wake up every 1-2 hours with horrible nightmares. They've been so much worse this year - vivid and constant. I push myself to stay awake for up to an hour each time, until I calm back down and feel 'safe' to go back to sleep. It feels like, if I go straight back to sleep, the nightmares will just pick up where they left off. But if I stay awake for as long as I can, completely exhausting myself, and only fall asleep when I physically cannot stay awake any longer, and only sleep for the bare minimum, it's like I'm too tired to have any dreams, let alone nightmares. So, while it is not ideal, at the moment it's the best I can do. But I admit, it is wearing me down.

  My psych asked a few weeks ago if I think we should start on trauma work, but honestly, I don't know if I'll ever be ready to. I've been carrying trauma around for most of my life, and not once have I ever felt able to actually talk about it. If I can just get the nightmares under control, I can just keep getting through.

  I had a close call last week, with someone trying to break in at 3am, which is one of my worst fears. It's shaken up my sleep even more, and I seem to have moved to only sleeping during daylight hours. Last night, I did actually sleep a solid night, after moving the cats' food/water/litter in to my bedroom, and locking us in, so I didn't have to worry about jumping up to grab them if it happens again. The police know who it is, and don't think he'll come back, but it's still left me on edge.

  And I know, you're probably all sick to death of me talking about my mum. But it was another one of those moments that hit me with an unexpected pang of grief. For so long, my mum would be the one I would call in an emergency, and even two and a half years after she passed, my first thought is still "I want to call my mum". And it's fucking painful, not having that One Person to turn to.

  Next month, I have a consult with an oral surgeon to get my wisdom teeth removed. I finally went to the dentist a few months ago, after breaking a molar in half (while eating sugar-free mint crisp dark chocolate, of all things!). It's been about 10 years since I last went to the dentist, and my childhood dentist has since retired. I went to see the dentist who my mum had been seeing before she passed. I didn't say anything - just booked a same-day appointment. During that initial appointment, at one point he casually mentioned "I haven't seen your mum in a while".  At this point, it's been quite some time since I've had to 'notify' anyone. It caught me off guard. He seemed genuinely shocked when I told him that she passed, but he was very kind about it. I could've sworn that I called them when she passed, but maybe he didn't get the memo.

  Anyway, I'm now up-to-date on dental stuff, had a few fillings done, a deep clean, etc... And now, the plan is to stay on top of regular check ups so things don't get so bad again. But I have four impacted wisdom teeth to be surgically removed, including one with a cyst beneath. My support worker, S, is taking me in for a consult in a few weeks time, and I guess I'll figure out things from there. But it just sucks not just having that One Person to be able to rely on after a procedure.


  And I know, I know it's been a long time since my last post. I find myself very overwhelmed at the thought of putting myself 'out there' these days. I don't really know why. I just over-think, and worry that I have nothing in my life worth sharing. I struggle with not wanting to be perceived. As if I don't want to be an active participant in the world. Sometimes I just want to fade away, and have no one notice.

  But as I write this, I think that maybe I have more to say than I think I do. And maybe it just takes actually sitting down and starting to get my thoughts out, and suddenly I do actually have something to say.








Some recent body checks from last week, since I'm now sitting fairly consistently below 60kg again (132lb, BMI 17.3). I've gone down a couple of bra sizes recently, and mots of my tops are loose, but my hips are forever stubborn. After spending the past 7 years bouncing around the 60s, it feels so euphoric to see the 50s on the scale again. I haven't done my measurements for a while, but over the years, I've been from an Australian size 4-14 (US 0-10), and at the moment I'm sitting around size 8AU.



xxBella

Monday 17 April 2023

At Last, Progress

For the first time in a long time, I’m finally starting to see progress on the scale again. As I mentioned briefly in my last post, I’ve drastically reduced my drinking, and of course, that has meant less calories.

When I first started drinking regularly in 2016, I was sitting at around 42-45kg (92-99lbs, BMI 12.1-13.0) Within a year, I’d gained a whopping 20kg.

Since then, I’ve bounced around the mid-60s (roughly BMI 19), with no real consistent, long-lasting change. The past 7 years have been a constant struggle as the calories from alcohol continued to pile up.

In January, I was sitting around 66kg (145lbs, BMI 19.1). Since the reduction of alcohol in late January/early February, it's started creeping back down. As of this morning, I weighed in at 61.6kg (135.5lbs, BMI 17.8)

It’s not a lot, and some days it feels like nothing, but it’s the most consistent progress I’ve had since I started drinking, albeit slow. Each week, my ‘average weight’ has been slowly edging down.

I’d love break back into the 50s for my 30th birthday at the end of the month, but even if I don’t make it in time, I know I’ll get there soon. I can taste it. And it’ll be my first time below 60kg since 2016.

* * *

As for the drinking itself, I’m drinking less than I ever have. I’ve been on a new medication for just over a year now, which I do think has eventually helped. At the start of 2022, I was drinking 20-25 standard drinks a day, with and occasional day or two off per month. That was probably my worst point, in the first year or so after losing mum. By the end of 2022, I was down to 10-15 drinks a day, with usually 2 days off each week.

Something changed around the end of January. I had my first 2-day ‘dry streak’ for the first time in five years (excluding hospital admissions). It was entirely on a whim, just wondering if I could do it, after having a few days where I'd only have a handful of drinks, but stop after a couple of hours and make a cup of peppermint tea instead. Once I managed that, things became a bit easier. Soon I was having 3 days, 4 days, 5 days without drinking. At the end of March, I had my first 6-day dry streak, which turned into a 10-day streak.

Before this, I can’t remember the last time I had more than 2-3 dry days in a week, at best, and never consecutively. Now, I’m only drinking once or twice a week. I do still usually drink quite a bit when I do drink, but overall, the reduction has been dramatic. In March, I only drank six times. That’s something I never thought I’d be able to say.

I always think it’ll be amazing, but in reality, the experience is dismal at best, catastrophic at worst. It just doesn’t make me happy anymore. And the more I reduce it, the easier it gets. Nothing compares to seeing actual progress, numbers dropping, and the feeling of my clothes becoming looser, or my ring sliding down my finger as I wash my hands. Once I started seeing actual progress, it made it so much easier to avoid the alcohol (and the calories it contains), even when things get rough.

Will I become fully sober? Will I be able to moderate, able to have a glass of wine without finishing off the bottle, and opening a second? Only time will tell.  

* * *

Through it all, there have been challenges.

11 months ago, I finished packing up all of my late mum’s belongings. It went into storage, to wait until I had a bigger place. Two months ago, I was finally able to get everything back. Not only boxes upon boxes, containing a lifetime of memories, but also some furniture.

It’s been a strange feeling. While it’s, in a way, comforting to be surrounded by her things, it’s also been a bizarre mix of sadness. It was a kind of reality check, that she really is gone.

In the first few days, I would find myself with a sense of confusion, like I wasn’t in my own home, but hers. Especially in the lounge room, which now seems like a copy-paste of the family home.

I’ve had trouble dealing with all the complicated feelings. I was worried that having mum’s belongings around might trigger a major backslide in my drinking, but it hasn’t. Instead, I’ve been dealing with it more like a ‘normal person’. Sitting with the depression. I haven’t turned immediately to drinking. I haven’t had a welfare check called since Christmas. No major overdoses.

It’s meant a lot of days curled up on the couch, in the dark, feeling deeply uncomfortable as I wait for the day to end. I spent the first few weeks sleeping on the couch, her couch, the couch from home. I think I’m finally starting to pull out of it, managing to work parts of my usual routine back into my day-to-day life. But some days, the grief just gets to me, and I return to my couch cocoon.

* * *

Much love to everyone out there in our little community. This place has been my one constant over so many years, through thick and thin. It might be a bit quieter than it used to be, as life comes along and people change, but I still wouldn’t trade it for the world.


Roses blooming in the backyard of my new house


xxBella

Saturday 21 January 2023

Another Year Gone

  So, here we are in 2023.

  I know it's been a while (again), so let's recap.

  Since I last posted, a lot has happened. There's been a lot of chaos, welfare checks, attempts at unaliving myself, trips to hospital in the ambulance, a stay in the ICU with a central line in my neck to combat an overdose, my first COVID infection, a broken toe, a physio who's given up on me, an unexpected move to a new house, the dreaded holidays, and more. Fair warning, this will probably be a long post, but I'll try to not ramble on too much.


  Back in July, I had one of the worst overdoses I'd had in a long time. Since the first anniversary of my mum's passing in June, I'd found myself spiraling. 

  With the Big OD, a mix of both stockpiled daily meds and paracetamol, it's all a bit of a blur. I'd stumbled upon the paracetamol while I was packing, leftovers from when I needed a mix of different painkillers after my nerve injury. And something inside me just snapped. I don't usually keep it around because I know it's a big trigger, and I know how much harm it has caused me in the past, but for some reason, I kept a few packets that I had left, even once I no longer needed them. 

  The next thing I remember was a few days later, waking up in the hospital, unsure of how much time had passed. Naturally, my main concern was my MyFitnessPal streak (at 4,387 days, I can't imagine losing it). I fumbled around my phone with uncoordinated fingers, and eventually found the app. Thankfully, I managed to keep my streak over a couple of groggy days, water automatically logged in advance.

  As it turned out, I had missed a telehealth appointment with my psychologist. She was concerned, as I've never missed an appointment with her before, and she knew how much I'd been struggling in the past month. She knew something was wrong, so she called in a welfare check.

  They had placed a central line in my neck, as apparently the IV cannulas in both arms weren't enough, pumping me full of acetylcysteine mixed with glucose, saline and various other nutrients. I was yellow, jaundiced from my liver struggling to process the paracetamol. I've had a lot of IVs in the past, and I've had a few paracetamol overdoses where it looked like my liver wasn't going to recover, but this was my first time with a central line. You know when things are bad when you wake up to four doctors standing over you discussing whether to transfer you to the ICU or a major hospital in Melbourne - more than an hour away from where I live. I was in the ICU for a few days, then down to the general ward, where I was officially held under the Mental Health Act (Australia's version of a section, basically).

  While I understand the supervision required in the ICU, I hate the 1:1 babysitters on the general ward. After watching me eat, the nurse would then come in, lift the cloche, and silently judge what I did and didn't eat. It seemed like a moot point though, as they were pumping me full of more things than I care to remember.

  I was determined to avoid the public psych ward, and get out of the Mental Health Act. They determined that I would, in fact, be transferred there. I've been to several different psych wards - from adolescent to ED to private - but I'd always managed to avoid this one. When I've been sectioned in the past, I've been kept on the medical ward out of necessity (no IVs allowed in the psych ward), and moved to another facility afterwards.

  The psych team came in daily. As the nurse changed the drip on the central line, she mentioned that they'd probably switch me to oral liquid supplements (ha, fat chance!) once I was moved to the psych ward.
  "Nope, I'm not going there, I'm going home."
  "Well, we're just not going to talk about it, because then we won't have a very good rapport."
And we left it there.

  Two days later, I was indeed going home. I plead to the psych team about how I was just grieving for my mum, and that I needed grief counselling, not a psych hold. That I just wanted to go home and be with the cats, and follow up with proper grief counselling. Not to mention, I had mere weeks left to find new housing, and couldn't afford to lose any more time. That I really needed to go home to be able to finish packing. All of it true. And eventually, they released me to the care of my regular team.

  In the time I was there, my support worker was sick. My brother stopped by to pick up a key to take care of the cats. The only real visitor I had was when my dietitian came to visit me while I lay in the ICU. I don't even remember it, but I remember that she was there. This was my second admission (beyond the quick emergency room visit) since my mum passed, and it just rubs salt in to the wound that I am alone.

 
  But wait, there's more.

  When I was in hospital (on the general ward), they stuck me in a room with someone who ended up having COVID, as they were out of space meaning no private rooms. From the moment they moved me in and I heard the other patient coughing constantly, I was immediately on edge. Not wanting to risk potentially offending the other patient, I typed a note on my phone and held it up to show the nurse, simply saying "I don't want to get COVID". They said I'd be fine, and they gave me a benzo to calm down. Being on a psychiatric hold, I couldn't exactly leave. I'd still rather share a room with someone contagious than men though, so at least they were able to avoid that.

  The day I went home I was starting to feel somewhat human again. After a long soak in the tub, although exhausted, and sore from scrubbing the sticky bits off from various dressings and those dreaded ECG dots, I was still waiting for my energy to return. I figured that I might not get much done for a few days, but if I could wash a few dishes and book a few rental inspections, I would be happy.

  It's important to note that I was tested for COVID a few times while I was in hospital. Even that morning, a mere few hours before I was discharged, they tested me and it came back negative. So I was in the clear, right?

  Wrong.

  I woke up at 2am with an unsually painful cough. All I could think was "oh, fuck". I did a rapid test in the morning, and of course, it was positive.

  Then, I got a phone call. The coughing lady they put in the bed next to mine did in fact have COVID. To say I was upset is an understatement. If I wasn't sectioned, I would've transferred to another hospital to finish the medical treatment as soon as they moved me in to a shared room. Both the outreach team and my psychologist encouraged me to lodge a complaint, especially because I have COPD and so any respiratory illness is a big risk. But life got in the way, and it never happened.

  After a week in isolation, I was relieved to be able to see my support worker again, and to continue looking for housing. Of course, if something can go wrong, it will. The first morning out of isolation, I managed to break a toe (thanks, osteoporosis) after stubbing it on furniture. After my nerve injury 18 months ago, I mostly only need the walking stick when I go out and have to deal with steps, uneven ground, or spending more than 5-10 minutes on my feet. Both my leg and arm are still quite weak, and get exhausted and sore easily, and I still have numb patches, but it could've been much worse. But at least I had the walking stick to make getting around easier despite the broken toe.

 
  So amongst all of this, I found myself having to move. My landlord had decided to sell my unit, and I was given 90 days notice.

  I'm not sure what it's like elsewhere, but in Australia, in Geelong, the rental market has been rough. I looked at dozens of places, applying for nearly everything with no luck, and time was running short. I couldn't face being homeless again, and as time went on, I became less and less picky, willing to take anywhere that would keep a roof over my head. When I was in hospital, and then with COVID, I had less than a month left to move. I had to have support workers go to inspections for me, and I would just apply without having seen the place myself.

  Thankfully, I was offered a place at the last minute. I had to organize the movers and picking up the keys all in one day, so the first time I saw it was when the movers started bringing things in. It was also the same day that I had to return the keys to my old place, so it truly was last minute. I was nervous about my new house. It was one that my support worker had looked at while I was down with COVID. When I first got it, she only had good things to say. But as days went on, she added little details that made me worried - that the last tenants were hoarders and she could barely see the house, things like that.

  In the end, I'm very grateful for my new house. It's not in the greatest condition, but it's much better than I worried about, and it keeps a roof over my head. Over time, it has become home to me. Half of my things are still in boxes, and it'll only build once I get my late mum's things out of storage, but I'm doing what I can. Between packing up my mum's house, and then my own, I spent the better part of a year packing, so I'm in no rush to get everything unpacked.


  There was another paracetamol incident in October. I felt lower than I had in  long time. I have felt some level of suicidal ideation fairly constantly for longer than I care to admit, but seldom have an active plan. But this night, I did. I had a method, a plan, notes for basically every one that I know in real life. It felt like it was going to happen.

  Even with the Big OD, I don't know if I truly wanted to die or not. But this night, I did. 

  The trigger wasn't anything big. It was just talking to my psychologist about mum, things that I've talked about many times before. My support worker was out getting groceries while I spoke to my psychologist on the phone. And I thought I was okay.

  But by the time she got back, my support worker found me blubbering. 'Love Me Tender' by Elvis was playing, one of the main songs on my 'mum' playlist, along with 'Imagine' by John Lennon - the two songs she requested for her funeral. As soon as she walked in and heard that song, she just hugged me. I blubbered in to her shoulder, sobbing uncontrollably. I don't even know exactly what the trigger was.

  She stayed for nearly half an hour over time, running late for her next client. I spent the rest of the afternoon and evening with my heart aching out of my body, lying on the floor and crying, gasping for air. My chest hurt, feeling like my heart was about to burst. It was the most intense pain I've felt in months.

  Late that night, I ended up Door Dash'ing half a dozen boxes of paracetamol. The next morning, I woke up with a blinding hangover. When I got out of bed, I saw the lounge room floor covered with a puddle of pill-filled vomit, empty pill boxes strewn around. I couldn't remember how long it was between taking them and throwing up, and had no idea how much had absorbed. I was too scared to tell anyone, not wanting to risk being sectioned again. Spoiler alert - I was fine, and did end up telling my team a few weeks ago. I was glad that it hadn't caused any damage, but the level of intent scared me.


  Christmas was painful, and I don't think that any years to come will get any better. 

  I made a most basic roast chicken for myself, served with roasted vegetables and homemade gravy. Black Russians - my mum's favourite drink - flowed freely, the bottles of Diet Coke quickly filling my recycling bin. On the couch, in my pajamas. TV off, no traffic outside. Just the sound of the bathroom tap dripping in the next room.

  After a few too many drinks, I decided it a good idea to go to the cemetery. Of course, I packed a 'water' bottle for the road. Asking the taxi to stop by the servo, I was disappointed by their dismal display of flowers, but I suppose it's to be expected on Christmas Day.

  Usually, I would take supplies with me. Marble polish and cloths for the headstone, secateurs for trimming the flowers and the edge of the grass that the gardeners always miss, things like that. This time, I was not so prepared. I dug through my handbag to find the tiny child-sized scissors that sit at the bottom of my bag, and made do with that. The little pack of tissues in my bag would have to make do instead of the polish I had stupidly left at home.

  I sat there for hours, crying and listening to her funerary songs. I called my brother. Heck, I even called my dietitian (yes, she is an absolute angel).

  After getting home, things didn't get any better. I can't even remember how things progressed, but I ended up on the phone with a helpline, just wanting to talk about mum. As it has in the past, it ended with a welfare check, and the paramedics turning up to take me to hospital. It was well after midnight, and I just wanted to go to bed and cry. When left unsupervised in the emergency department, I did something I've never done before and walked out. My heart raced in the taxi as I went home. Yes, they did call me to find out where the hell I went, and no, they were not happy.

 
  I know this is basically several posts in one, so I'll wrap it up here. I don't exactly have high hopes for 2023, but as I've said for the past couple of years, it can't really be much worse. My support team are keeping a close eye on me, including daily medication pick ups since the Big OD. It's been a few weeks since I last self-harmed, and I've cut my drinking down more than I ever thought possible, but that's a story for another day. I'm hoping to get past the mental block and get back to blogging more regularly, but I know I've said that for quite some time now.

  For now, I hope you all have a Happy New Year.


xxBella

On a not-terrible body image day.
New clothes, for the first time in years. 
The dress waists sit a bit high due to my height, but they're not terrible

With my babysitter in ICU
Dyed pink with antiseptic for the central line

Joggers and crop top, from the same brand as the dresses
(with an unfortunate crotch seam)




xxBella

Saturday 28 May 2022

Disconnected from Reality

I feel like I don't know who I am anymore.

A stranger in my own life.

What is wrong with me?


In recent months, I've come to the jarring realization that I am not the same person I was a year ago. I feel disconnected from the world and the people in it. Not really real. It feels like I'm missing a piece of my heart. Somewhat dead inside. Slipping away further each day.

For the most part, I just want to be alone with my grief. I want to curl up with it and block out everything else. And in a way, I am alone with it. It feels like people have already forgotten my mum. Like no one misses her the way I do. It feels like it'll never get easier.

Things have been rough since Christmas. I think that's when I started to fall back downhill. There's been a lot of anniversaries, and a lot of 'firsts'. Christmas was the first big one, and since then, my birthday, my mum's birthday, and Mother's Day (all three falling in one week).

It's been hard to figure out how I'm supposed to spend those days alone. Do I sit in silence, drinking the day away with only memories to keep me company, like I did on Christmas? My psych even offered to take me out for lunch for my birthday, but that just felt too pathetic and pitiful to even consider. In the end, I spent them all alone.

At the start of the year, an old friend messaged me, wanting to catch up for a drink. And part of me wants to. But I couldn't do it. I make excuses, weeks between replies. I can't bring myself to be social. I know that no one wants to hear me rambling on about my grief, but it's all I can ever talk about. All I can ever think about. It's completely consumed me.

When mum was sick, my life became all about throwing myself into supporting and spending time with her. It wasn't an overly long time, but it was extremely intense. Now, I feel like I've lost all purpose. In a way, her illness and subsequent death have become a part of my identity. It's a new breed of emptiness and loneliness.

The only people I see are paid to be there - my support worker, my psychologist, my dietitian, my doctor.

I see her in my dreams every night. Living, dying, crying, laughing, fighting.

I'm working on my psych to find healthier ways to grieve. Positive ways.

Last week, I finally finished packing and saying goodbye to mum's house. I'm glad it's wrapped up, as it was a very intense and exhausting process, both emotionally and physically. But handing over the keys for her house feels like losing another part of her. It was heartbreaking, walking out for the last time. I'd still had her place to go to and feel close to her. But now, I only have the cemetery.

I know I need to find a way to move forward. Not necessarily move on, but a way to stop being stagnant, and find my own life. I know that my mum wouldn't want me to be so suffocated by her loss, but I can't help it. Last year changed me drastically, to the core, and normality feels out of my grasp.

It's hard to get out of bed in the mornings again, and even harder to not retreat back after a few hours. At the moment, my cats are my purpose. They get me out of bed each day, if only for a short while to make sure their bowls are full and their litter boxes clean. And when I inevitably hide back in bed, they keep me company and comfort me.

Apart from the cats, the only other reason to get out of bed is to make a drink. I hate myself for not having control over alcohol. Even though I've cut back my calories (both food and alcohol) to not gain any more for the last few years, I still hate seeing the number on the scale each morning, frustratingly stable.

The only decent loss I've had in the last few years was when my alcohol dropped to nearly zero for a few months - about 7kg during the time I was staying with mum in hospital for her final weeks, when I was in hospital myself shortly after, and the month or so after that (before my alcohol intake went back up). At the moment, I average about 450 in food, but around 1,200 in alcohol. Not even sugary drinks, just dry wine and vodka. I've just started a new medication to help get off the drink, and it's early days, but I'm cautiously optimistic. If only my GP knew that my only motivation to get sober is so I can get the weight back off...

As far as my nerve injury goes, I stopped physio a couple of months ago. Or, more to the point, they dumped me because my progress had plateaued. My arm is basically back to normal, although it still gets tired/sore easily (chopping veggies for a batch of soup last month had me out of action all week), and the Lyrica helps with the nerve pain. But my thigh is still numb, and my leg still weak. I'm still needing the walking stick, and can't do a straight leg lift no matter how hard I try. I've got a couple of specialists appointments coming up in June, so I guess I'll see where to go from here.


So many thoughts. So few words. So little energy.

Who am I?






My slightly depressing Christmas meal. 
Lamb leg cooked with garlic and rosemary - 'set and forget' 
in the slow cooker - with air fried potatoes. 
Usually, I would go all out with a fancy roast chicken,
but there's just no point anymore.




xxBella

Friday 24 December 2021

Grief & Consequences

Five days after mum passed, I ended up facing a serious health issue of my own. 

She passed on the Sunday. The following Friday, I went over to her place. I wasn’t going to start packing yet. But I wanted to do things like look through photos, and even just be there to feel close to her.

It was my first time going over there. And I couldn’t deal with the emotions. I didn't want to feel. I felt lost, and so alone. I didn’t know what to do. I didn’t know where to sit. So, in the early evening, I just lay down on the floor in front of the heater. I took too many of my meds. It’s something I used to do a lot, but not for the last few years, and it was minimal compared to what I used to do. I curled up in front of the heater, on the floor, and wept until I passed out.

When I woke up in the middle of the night, I couldn’t move my arm. It was kinda like when you sleep on it, but worse. More intense, completely unable to move, unable to feel. Then, trying to stand up to get to the glass of water on the coffee table next to me, I fell over. I couldn’t feel or move my leg either.

I managed to drag myself to the couch, with my arm and leg being dead weight, and waited about half an hour, thinking my limbs would ‘wake up’. I used my left hand to Google my symptoms (as we all do), but it only worried me more. Not wanting to be a nuisance to the emergency services, I called 'Nurse on Call' for advice, who quickly put me through to the ambulance.

They thought I’d had a stroke.

All I wanted to do was call my mum.

I didn’t realize it’d been about 30 hours that I was passed out - I thought it was more like 6. I lost an entire day, passed out on the floor.

It took days for them to figure out what was going on. At one point, I was scared I was going to lose a limb - maybe two.
Was it a stroke? 
Autoimmune disease? 
Compartment syndrome? 
Complications from an ingrown hair in my armpit? (not even joking) 


I still don’t quite understand it all. To put it simply, in the way I understand it, I slept on my arm and leg for too long. The blood supply was cut off for long enough for the muscles to literally start to die. When that happens, toxic byproducts are released into the blood. It’s called rhabdomyolysis. My arm swelled to twice it’s usual size (which has thankfully gone down). Thanks to dysmoprhia, I couldn’t even see it until a doctor pointed it out before a scan. Even then, I couldn’t see it unless I put my arms next to each other to see the difference. The swelling put pressure on my nerves, and now I’m left with nerve damage. 

I spent three weeks in the hospital. They wanted to keep me longer to do physical rehabilitation, but I needed to go home. I had spent two weeks there staying with mum during her final days, then 5 days at home, then 3 weeks in as a patient. I went to my mum's funeral in a wheelchair. I felt like I couldn’t grieve, being in the same place she passed away. I missed my cats.

I’ve been home for 5 months. I went from wheelchair, to gutter frame, to walking frame, to crutches. I just graduated to a walking stick last week, although I’m still very wobbly on it. My leg still collapses occasionally, and my thigh is still numb, but no where near as badly as it was. My arm is doing better. I have most of my movement and feeling back. It still gets sore and tired if I use it too much, even basic things like typing or cleaning, but I’m off the hardcore painkillers (oxycodone) regularly. I’m on lyrica to help with the nerve pain. If I miss a dose or two, I really feel it the next day, so I guess that means it’s working. 

I see my physio every week. Every session leaves me feeling weak and shaky. It’s sad how far things have deteriorated so quickly. I’ve been recommended to go twice a week, but mentally, it’s just too much. 

They just did another MRI on my shoulder, and thankfully there's no tumor there. I didn't know that was even a possibility until the neurologist gave me the results last week. I've had so many MRIs, CTs, ultrasounds, and various tests in the past 6 months, I've just stopped asking why. I've got another nerve conduction study coming up in the next few months, so hopefully I'll get an updated prognosis then. 


I’m sorry it’s taken me so long to share this. When I last posted, I had already been dealing with this for a couple of months. In the early days, they didn’t know if I’d regain function in my leg, or especially in my arm, or if the pain would ever go away. After being so depressing this year, I think I wanted to wait until I had some good news about this.


On Monday, it will be 6 months since mum passed. It’s still hard to believe she’s really gone, let alone that it's been so long. I still keep thinking I can just pick up the phone and call her. 

The day after mum passed, I went back to the hospital, just to sit out the front. Because the funeral home hadn’t picked her up yet, and it was the closest I could get to her. I took wine in a travel mug, and sat out the front for hours, because I knew she was there. I did ask the concierge at the entrance (who I got to know very well in those last few weeks, and I still am very friendly with when I go in for appointments), and she said I could go there any time I wanted to. 

I've been spending a few days a week at her unit. Packing and organizing. It's slow going because of my injuries, but I'm nearly there. It's going to be extremely sad once I can no longer go there. Even on days when I have no energy to pack, sometimes I just go over and sit and remember. Losing that will be like losing another part of her. 

I’m not coping with her loss. Some of you will know that my mum and I didn’t get along for a long time. But in the last few years, since moving out separately, we worked hard to repair that. And once we found out she was sick, I spent every day trying to help her. She told me that she was worried about me, that I was spending so much time and energy trying to support her, and that she was worried about how I would cope once she was gone. 

But she was right. I feel so empty without taking care of her. It became my reason to live for the time she was sick. Every moment, I was trying to think of what I could do to support her. I can try to fill the void with spending time at her unit, packing and organizing things. But what will I do in a couple of months when that’s no longer there? 

I still go over once or twice a week, because I have to get it organized. But I only take my night dose of meds with me. I thought it was an issue I was past - I hadn’t misused them to knock myself out in nearly two years. But I was wrong. And I’m terrified it’ll happen again.


When I was in hospital, I couldn’t help but laugh. Only a couple of weeks earlier, I’d poked fun at my mum for using a walking frame at the age of 64 (because I told the nurses that I thought she needed help with walking). Then I was using one, at the grand old age of 28. And when I was stuck in the wheelchair, I had no one to push me. 

I went to mum’s funeral in a wheelchair, with my support worker, with day leave from the hospital. As per her requests, it was a very small, private, graveside service. We had my dad’s headstone re-done to reflect them both equally. A few weeks after we found out she was dying, we had gone to my dad’s grave, to mark 25 years since he passed. We spoke about what she wanted it to look like, what she wanted on it, and I noted it all down. When we left, she patted the ground and said “I’ll see you soon, Bob” 

There was just 15 of us in total. My brother, my support worker and I, my 90-y.o great aunt and her son, four of her closest friends… she also wanted an open invitation to our medical center, so both of our GPs, my dietitian (who used to see mum), and 3 of the receptionists came. It was small and simple, but beautiful.

The words that stick with me were towards the end of the service. 
“In sorrow, but without fear, with dignity, and great respect...” 
Mum might have been without fear, but I'm still scared shitless. 


Christmas will be here in 6 hours, but let's just ignore it this year. It feels uncomfortable, not going over to see mum. Not making my roast chook. I've got a leg of lamb, which mum and I used to cook a lot throughout the year, to throw in the slow cooker. Simple. But I don't know if I'll even do that. 

We never did much for Christmas. Just spent the day together, cook a roast. My brother would visit. It was never anything big or overly special. But this year, I feel like I’ve been falling apart a little more each day. I turn the TV off whenever there’s a reference to Christmas. I hate hearing about it. I try to ignore it. But tomorrow is going to suck, to say the least. 

I'm truly dreading tomorrow. My first ever Christmas alone. I'm scared that it’ll be the hardest day so far, even harder than that first time going back to mum's place. That left me with nerve damage that I'm still trying to recover from after 5 months, and could potentially be permenant. I'm scared of what tomorrow will bring. 

My piercers offered for me to join their family Christmas at their farm. Which was absolutely lovely of them. But the last thing I want is to be around a happy family, and rub salt into the wound that I will never have that again. I thought about taking myself out to a nice restaurant for lunch. But same problem. Too many happy families. I’d probably ruin the day for anyone I was around. 

I thought about setting up at the cemetery for the day. But there’s going to be so many people there. I’m going to go on Monday. I’ve been on the 27th of every month. This is going to be the six month mark.


I've been trying really hard to start getting back to my daily routine, but even now, a few days shy of 6 months since mum passed and 5 months since I've been home from hospital, it still feels near impossible. 

In the couple of months after mum passed, my weight dropped by a little over 10%. It's stabilized since I've been drinking more again, but I'm comfortably 'officially' underweight again (forever fat though).

Thank you to everyone who reached out, both here and on Facebook as well as privately. I'm not okay. I don't know if I'll ever be okay again. 

I'm having a difficult time finding words, hence this post has taken so long for me to write. It's still early days, both in grief and in my injury.

To make things harder, my psychologist (who I've been seeing for many years) is on leave until March. She's been away for 3 months already. It took her a long time to tell me that she was expecting, because she was worried about leaving me. But when she did, I was nothing but happy for her, as much as we were both scared about me facing the holidays alone. She emailed me last night with a photo of her beautiful baby boy. I've been seeing someone new, I've only met them a few times, but they seem nice.


For now, I think I'm going to go have a cry and make a Black Russian. 

I just want to call my mum. 

Merry Christmas. 


Sitting on the porch, watching all the trick-or-treaters on (a socially distanced) Halloween. My first genuine smile in months. 



Day 3. The swelling hadn't even hit it's max yet.

Left – my thigh. Right – my forearm. 


Princess Persephone on her Halloween castle (a gift from my lovely support worker)




xxBella

Saturday 4 September 2021

19 Weeks, 2 Days...

It is with a very heavy heart, and immense sadness, that I make this post to let you all know that my beautiful mum has passed away, after an 19 week battle with cancer, which was unfortunately found too late to be curable.

But we’re all grateful for that extra bit of time that treatment could buy her to slow things down, and for the medical team who made it happen. Things moved very quickly from the start. She fought hard through chemotherapy, radiotherapy, and immunotherapy - even knowing that it would at some point take her life.

Through everything, she was brave, strong, and never afraid. She didn't know what – if anything - awaited on the other side, but she found peace knowing that she'd be with my dad again after 25 years. She was selfless until the end, worried about her family and how we would cope, even in her final days in the hospital, when her lucid moments were few and far between.


In her last two weeks, she was supposed to just go in for a quick appointment for immunotherapy. Her oncologist said she couldn’t do it, that her blood results needed to be followed by an inpatient admission. Less than 48 hours later, we found out that she wouldn’t be going back home.

I stayed at her hospital bedside for her last ten days, holding her hand, as each day she slipped further away. It was the most precious time, and something I'll never forget. Visitors at the hospital were only allowed at this point for end of life. I’m eternally grateful that they were more than happy for me to stay there, and set up a folding bed for me so I didn’t have to leave.

As much as we knew it was coming, even her oncologist thought she’d have another week or two before things started to fail. Her oncologist left on the Friday, saying he’d see her on Monday. Sunday, at 1:50pm, she was gone.


She’d been mostly sedated for the last few days. But no one was expecting her to pass so suddenly. I’d been sitting by her bed, holding her hand, for days. One minute, she was there. The next, she wasn’t. I’ll never forget the way her face changed, as she stopped breathing and her eyes opened. I yelled for the nurses that something was wrong with mum. I held her hand, squeezing, shaking, telling her I loved her. The nurses came in and stood there. I wanted them to tell me that my worst fears weren’t coming true, not yet. Everyone thought she’d have more time.

It was nearly three hours before I let go of her hand, shaking, screaming, hysterically babbling to please wake up, please don’t leave me.


For the last few days, she was sedated to the point that the only way to describe it is living death. It was terrifying, but ultimately the best thing for her. As they adjusted the dosages, she would have lucid moments where she woke up, extremely confused. All I could do was tell her it was okay, that her doctor had given her some medication because they wanted her to get some rest, trying to comfort her until she went back to sleep.

The day before she passed, she woke up suddenly, looked at me, and asked 
“Am I dying?”


Since the start, knowing it’d most likely spread to her brain, mum always said that she wanted her body to go before her brain. She didn’t want to go through what she saw my dad go through.

They don’t know exactly why her mind started to slip in that last week. The tumor had shrunk. It’s possible that it was a side effect from radiation. Her memory, both long and short term, slipped so far in such a short time. Within minutes, she’d forget what we’d been talking about, and sometimes even that I was there. It was distressing for everyone, especially mum, which is when they decided on sedation.


Mum would express that she was worried about me putting so much time and energy into trying to support her, both in those few months after we found out she was sick, but especially as I spent her final ten days staying in hospital with her. It consumed everything. I would tell her “helping you is helping me”. I was either trying to think of ways to support her, or visiting her to cook and make sure she had easy meals to reheat, or even just spending time with her, with no words needed. Watching movies she wanted to see.

The only thing I could say to her towards the end, sarcastically, was “Yes, I’m sure I’m going to look back and think ‘damn, I wish I hadn’t spent so much time with mum’”. There was never going to be enough time. No matter how much time I spent with her over those 19 weeks, I knew it’d never be enough, whether she had two months or two years left.

I take solace in the fact that we didn't leave anything unsaid. We had a lot of difficult, but necessary, deep & meaningful conversations, even in her last week. She had things to say that lifted weight off her chest, and I had many too. It wasn't easy, and there were many tears, but it gave me a lot of peace and closure, and I hope it did the same for her too.


But I can't help but have regrets. She’d told me days before her admission that she had pain, very similar to when she was first diagnosed. Her liver. I couldn’t see the jaundice, even after her doctor said it. I can’t help but wonder - should I have pushed her to go to emergency, as I was worried about her liver? If they caught it those few days earlier, would it have changed anything? Would they have been able to catch it and reverse it?


In the end, she was never scared. I can only hope to one day be as brave as her. She didn’t know what, if anything, was on the other side. But she knew that she would be reunited with my dad, who passed 25 years before, and that gave her peace.


On June 27th, at 1:50pm, the world became a bit less brighter


None of it feels real. After this horrible disease taking over our lives since February 12th, tightening its grip with each week that passed, everything feels so empty. For those 19 weeks and 2 days, almost to the minute since we found out, nothing else mattered. Since mum passed, everything feels so crushingly empty. I rewatch the funeral stream over and over. I listen to the songs on repeat - the songs she'd told us at the start of all this that she wanted. “Imagine” by John Lennon at the start. Then “Love Me Tender” by Elvis as they lowered her casket to join my dad.


Rest In Peace, mum. I know you’re back with my dad, the one and only love of your life, after 25 years, and how much comfort it gave you to know that you’d be with him again.


The beautiful morning fog, sitting outside the hospital with our morning coffees

The big haircut during chemo

Not the most flattering photos, but some of the most important. 
Precious moments, spending the last 10 days staying at the hospital with mum

Our last fish & chips at the beach, 6 weeks post-diagnosis


xxBella