An empire of broken edges

I’m so tired of coming back to this – this overstretched, unsatisfied, insecure mess. I don’t know if I can be anything else. I mean, it’s always been like this. I don’t think I’ve ever been anything more than a tiny deluded speck of dirt trying to understand the infinite shining cosmos around me. And I think I’m finally beginning to grasp that it’s something I’ll never understand. I will never know why I’m here. I will never know what happens next. And I will never know why I keep waking up to face my futility, hoping for things to change. I’ve built an empire from my broken edges, and I’m just so sick of tearing myself apart for a story I didn’t choose to start. This isn’t how I want to live, expanding the edges of my existential crisis until it engulfs every other piece of me. This isn’t who I want to be, a mad tyrant inventing monsters in my mind to justify my misery. This doesn’t feel like my story, but I have absolutely no idea how to write it any other way.

Self-compassion 

The truth is, I don’t know how to love myself. I don’t know if I ever have. I don’t even know if it’s something I can learn. Right now as I’m lying in my bed, I keep looking down at this body that has changed so dramatically in the past year, and I just want to tear it apart. I want to tear it apart until I’m smaller. I want to tear it apart until I’m different. I want to tear it apart until I disappear. 

I just feel so much resentment towards myself, a fierce hatred that has hijacked my brain and consumed me entirely. It’s honestly exhausting. I don’t know how to tolerate it anymore. I’m just so tired of it all. I’m tired of the endless thoughts about my appearance, my weight, the way my stomach rolls and bulges when I sit, the way my abdomen becomes so grossly distended after eating, the way my clothes don’t sit comfortably as I move and change positions, the way my thighs touch when I put my feet together, the way my collarbone doesn’t protrude as prominently anymore, the way my chin doubles if I don’t hold my head in the right position. I’m tired of the constant body checking – the way I constantly pinch and grab my skin, the way I scrutinise myself in the mirror and every other reflective surface I find, the way I cringe in disgust and feel the words spill from my lips automatically. Fat. Disgusting. Hideous. Pig. And more recently, I’m tired of the isolation – the way I’ve withdrawn and hidden myself at home, declining invitations, bingeing in secret under clothes that hide my body – all because I’m so miserable and ashamed, all because I can’t stand to inflict myself on others when even I can’t stand myself. 

I hate to think of all the moments I’m missing because I’m so fixated on my flaws, constantly measuring myself against everyone else and always falling woefully short. I know I’m wasting my life worrying about something that seems so superficial and vain, but when I start unravelling the mess inside my head, it stems from something much more complicated than a simple desire to be thin. A part of me wants to suffer. A part of me wants to just give up and die. A part of me wants to stay stuck here where it’s familiar and comfortable so that nothing can hurt me unless I choose to hurt myself. I can spout rational alternatives until I’m blue in the face, but there is some part of me that honestly believes I deserve all the pain I’ve experienced in recent years, a part of me that believes I’m not worthy of happiness. I want it though. I want happiness. I want love. I want a new chapter full of independence and opportunities for adventure. But in order to obtain those things, I have to move forward, and that means acknowledging and processing all of my pain, taking risks that leave me vulnerable, and loving myself through it all – both when I succeed and when I stumble and fall. It frustrates me when I think about my future and feel terrified to the point of paralysis, because I know what I need to do, but I struggle to translate that knowledge into action. 

I know I can’t stay stuck here forever, but I haven’t known how to take that first step towards the future. I’ve been thinking in extremes, wanting to find myself at the finish line before I’ve even started the race. But that’s not how this works. I need to think smaller. Just one step. Just one small change. And tonight, I feel brave enough to try something new. So I’m heeding some very good advice and writing myself a little reminder to read on those extra-difficult days when I’m in need of some self-compassion.

Here goes…

I am surrounded by incredible people who love me unconditionally and in my entirety. When they think of Kate, they don’t think of a number on the scale, or a particular clothing size or my illnesses. Rather, they think of me as a whole, all of the little things that add up to make me the unique person I am – the way I make them feel good about themselves, my empathy for others, the way I encourage and support them, my laughter, the way I talk, all the memories we’ve shared. They think of me with love and affection and joy. I shine brightly for them, illuminating their lives in a way that no one else has or ever could, because they are not me. And that is what I need to remember. I’m not just sick. I’m not just my eating disorder. I’m a daughter, an aunty, a sister, a girlfriend and a friend. I have hopes and dreams and aspirations. I have relationships to build and strengthen. I have people to love. I’m so much more than this body. I’m so much more than my past. I’m so much more than my pain. I am worthy, just the way I am. I will always be enough.

Punishment

I spent my afternoon in the bathroom, my back bent uncomfortably and my head hanging low over the toilet bowl. I would periodically contract, or push on my bloated stomach – it was incredibly full from the 3000 odd calories I had eaten in the past hour as I binged, as well as the water I kept guzzling to make purging easier. I was so full that the contractions of my stomach and the simple act of gravity caused me to vomit. Like a cat coughing up a hairball, I would gag and heave over the toilet bowl. A strange mixture of saliva, stomach acid and chunks of food dribbled from my mouth. The sweet aftertaste of the 12 cinnamon donuts I’d consumed as part of my binge burned my nostrils as my vomit filled the toilet bowl. My blood sugar levels were incredibly elevated, so I felt irritable and unwell. I stood up and caught my reflection in the mirror. My face was flushed bright red and a thin sheen of sweat coated my skin. My eyes were bloodshot and streaming. Mucus poured from my nostrils, mixing with the remnants of vomit that coated my upper lip. I couldn’t catch my breath. I needed to rest, but I was riddled with guilt and anxiety thinking of all the food I’d consumed. How could I have eaten so much? I’d never eaten this much food in my life. I’d never lost control like this before. I thought of everyone who knew me, or at least knew the perfect facade I presented to the world, and wondered what they’d think of me now. This greedy, impulsive monster inside my mind was unrecognisable. Why couldn’t I control myself? Why was I allowing myself to undo all the effort I’d put in to lose weight by restricting? Why was I so miserable? 

I knew I couldn’t rest until I’d fixed it. I was terrified of the consequences, of the number on the scale being unacceptable. I knew I needed to rid myself of as many calories as possible in whatever way I could. So I skipped my insulin dose to force my sugars to run high, because elevated glucose levels promote weight loss. I forced myself to vomit, returning to the toilet bowl time and time again in an attempt to empty myself of the ugliness inside of me. Then I forced my exhausted body to exercise, pacing my house in an agitated, frantic way, wondering how many calories my body had absorbed, placating my distress with empty promises of future restriction and better self-control.

This is currently my life. 

I spend all day, every day consumed with thoughts of food, numbers, calories and weight loss, or engaged in unhealthy behaviours. I can recognise that I’m not thinking or behaving logically anymore, but I keep falling further and further into this dysfunctional, disordered mess. Each punishment, each successful purge fills me with some detached sense of twisted pride. It simultaneously feels as though I’m taking back control and disconnecting from the parts of me that hurt too much. I know my behaviours are reckless and dangerous and unsustainable, and I know that nothing good will come from them in the long-term, but I just can’t seem to make myself care. I’m so apathetic – about my physical health, about my mental health, about the direction my life is heading. The older I get, the harder it gets to survive. I feel as though I’ve been awake for far too long, and I’m just exhausted in a way that no rest will ever fix. 

The eating disorder.

I can’t stop binging.

It started when my dietitian gave me a meal plan to manage my restrictive eating disorder. The meal plan involved eating significantly more than I’ve eaten in over a year. I didn’t actually think I’d be able to eat that much food. I was terrified of the idea of even trying. 

But I decided to attempt recovery properly. I followed my meal plan. And now the pendulum has swung the other way. I have lost my terrifyingly strict control. I lived off 500 calories or less for endless months and months without wavering an inch, but now that I’m eating more, I can’t stop. In fact, I have binged almost every day since starting my meal plan. It has been four weeks now. Four weeks of uncontrollable excess. Four weeks of poor diabetes control. Four weeks of overwhelming self-loathing and shame. And it’s created an awful cycle. I binge and then I try to compensate. If I’m going to eat thousands of calories worth of sweet sugary foods in the space of a few minutes, I feel as though I should subtract those calories from somewhere else. I know that’s a terrible idea, because I know that just maintains the vicious cycle, but this monstrous illness is terrorising my rational mind into chaotic disarray, and I can’t seem to react the way I should. 

I’m just so disconnected. During my binges, it’s as though some primal urge takes over and forces me into action. I search for anything I can shovel into my mouth to try and fill the empty spaces inside of me. I hide myself away with my food, forcing it down my throat almost faster than I can chew, barely pausing to breathe. I keep going – 12 donuts, 30 cookies, a box of muesli bars – anything that is easily accessible, anything that is sweet and carbohydrate dense. It feels so good. It’s like the food is some kind of anaesthetic. While I’m eating, I feel so blissfully numb. While I’m eating, my problems don’t exist. The calories don’t matter. The weight gain doesn’t matter. The high blood sugar levels don’t matter. The bloating and nausea don’t matter. It’s just me and the food and this indescribable sense of unbridled liberation.

Until suddenly, I snap out of it. I usually snap out of it because my stomach can’t hold any more food. A few times, I’ve binged to the point of unintentional vomiting. Most of the time though, I just binge until I’m so bloated that it hurts to breathe and I’m forced to lie there with a grossly distended abdomen. I hate that feeling. That’s when I feel the overwhelming drive to ‘compensate’. So I purge, forcing the end of a toothbrush down my throat until I’m coughing up warm vomit and blood-tinged saliva as I scrape my insides raw. I down laxatives to flush my insides clean. I modify my meal plan, skipping meals and restricting my intake further. These behaviours feel necessary to make the binges more acceptable to my disordered mind. It’s not enough though. I’ve gained 4 kilograms in the last few weeks, and I am reaching breaking point. I feel so disgusted with myself. I feel so weak and ugly. I can’t keep going like this. I can’t keep gaining weight. But I don’t know how to stop. All I can think about is food. All I can think about is my next binge. I drive to the store and stock up on ‘binge foods’. I promise myself that the next time will be the last time, but I inevitably break that promise with yet another binge. I push the binges further, and consequently attempt to compensate using more extreme measures, all the while getting sucked deeper and deeper into this black pit of despair. I just keep eating more and purging more and hating myself more. I don’t know if this will ever end. How do you fight your own mind when it constantly invents new ways to destroy itself? I’m so miserable, except for that brief period of disconnect during a binge. And I desperately want more. I want to sit comfortably in my own skin. I want to feel worthy of the space I occupy in this world. But I don’t know how. I don’t know how to love myself enough to give myself permission to be more than this. 

A night in the psychiatric hospital

I’m lying on the creaky reclining chair outside of the nurse’s station in the psychiatric hospital. It’s almost midnight, and the place is silent and dark, my little safe haven illuminated only by the soft flickering lights of a Christmas tree. Tonight, the festivity feels so forced. The world is winding down to celebrate the end of another year, and I’m still stuck here, trying to reconnect all the fragments of myself that keep breaking and separating. 

I have spent the last four weeks here trying to find a way to move forward. Ironically, I have realised that in order to do this, I need to process who I have already been. There have obviously been a number of external traumatic events in recent times, however I believe I firstly need to acknowledge my tendency to internalise my pain and grief and other ‘negative’ emotions until they’re buried deep within me. 

I have spent much of the last 2 years stuck in a vicious self-destructive cycle of blame and punishment. But I don’t want my story to end here. I’ve realised recently that I actually really want to move forward, despite the excruciating path that lies ahead. I want to welcome all the risks that life involves, because I believe that it’s the only way I’ll find the place I’m supposed to be. Sure, it’s scary. I feel so vulnerable placing bets on myself without ever having played this game and not even really knowing the odds. But I’m trying it anyway – I’m working on moving through the fears that have paralysed me and coaxed my life into chaotic disarray. My life will happen along the way, and sometimes, hopefully, it might even surprise me. I am still incredibly fragile, so I am starting small – dipping a toe into the darkest recesses of my mind, before delving deeper to try and find myself again. 

Afraid of sleep

It’s the middle of the night and I’m awake. Again. In the last few months as my anxiety has increased and my mood has plummeted, I’ve started experiencing difficulties with sleep. At some point, I’ve become afraid of sleeping. It sounds bizarre, because I know sleep is something my body really needs. I don’t quite understand the rationale behind my fear, but I don’t think it’s the actual sleeping part I’m most afraid of. I think I’m most afraid of the in-between, the stretch of time that inevitably comes between awake and asleep. Sleep never comes easily to me, so I usually find myself lying in the darkness, heart pounding as a silent reel of uncomfortable images plays in my mind. Words of condemnation flash like neon signs in the night, burning imprints in my brain. The darkness presses in, like it’s a tangible weight, like it’s alive. So I try to shake it off and push it away. I force myself to lie in my room with the light on, even when I’m bleary-eyed and my eyes are burning with exhaustion. I try to keep my mind occupied until it feels as though I can’t stay up for even a minute longer. But inevitably, when the light goes off, I’m awake again and I’m afraid. So I’ve fallen into unhealthy habits to help me cope. When the darkness and the overwhelming isolation of my thoughts feel like too much, I self-harm. Once I’ve punished myself for my fears, I feel as though it’s acceptable to let myself sleep.

Then, when I do sleep, there are the nightmares. They are always so chilling and vivid and reminiscent of traumatic experiences. I wake up feeling as though I’ve actually lived them. Last night I had a dream that I was pregnant. I was about 20 weeks along and I was lying on my bed, but something felt wrong. I was consumed by pain. It felt like the baby was eating its way out through my abdomen, gnawing relentlessly, setting my nerves on fire. My partner came in and found me lying curled up on the bed in the foetal position. He flipped me onto my back, pulled my legs open and reached inside of me. After a few moments, the pain eased and I initially felt relief, but then I saw that he was cradling my tiny baby in his hands, her chest still and her head drenched in blood and fluid. I watched in horror as he began throwing my dead baby in the air and catching her as she fell, over and over again. Every time the baby landed in his hands, blood would spray everywhere. Soon the walls and my face were drenched in it. It was all I could see and all I could taste. The thud of her body punctuated my partner’s endless laughter as he bled my baby dry, and I just lay frozen on my back, legs bent and bloody, completely powerless to change anything. 

So it’s the middle of the night and I’m awake again, because I don’t know what else to do.

The blur of a dark place

Last week I was admitted to a private psychiatric clinic to stabilise my mental health. I have been hesitant to share this, because admitting that I need help feels like weakness, however this is a fundamental event in my illness journey so far, and I therefore think it’s important to share. 

I am afraid that I must seem so ungrateful- I’m in a far better place with my physical health, but instead of seizing the opportunities that this affords me, my brain is hell bent on destroying myself. I really don’t understand what is happening. It has all gone downhill so quickly. I think that life catches up to you just when you think you’ve survived the worst of it. Then there occurs some kind of emotional fallout – the grief, the dissection of every raw wound, the tears shed as you relive the hours, days, months, years you never thought you’d survive. 

I am spending 11-12 hours a day caught up in my OCD rituals. Every day I wake up and find myself walking through the same rituals in identical ways while my world shrinks and becomes more and more restricted by my attempts at control – tapping, checking, straightening, reassurance seeking, and a fixation on numbers that has resulted in a re-emergence of my eating disorder – numerous pathetic attempts to protect myself from pain. I have somehow lost the ability to sleep for more than a restless few hours a night. My nights are plagued by OCD behaviours, severe anxiety, intrusive images and disturbing nightmares. I am so terrified of falling asleep for reasons that I can’t really articulate, so I often force myself to stay up past 4am even when my body feels like lead and my eyes are burning with exhaustion. I am experiencing endless panic attacks. I feel as though I have no control over my emotions anymore – I’m disconnected, I’m sad, I’m angry, I’m overwhelmed, I’m depressed, I’m anxious, I’m apathetic – it changes so rapidly without logic, as though someone is just flipping a switch in my brain for their own entertainment. I am utterly exhausted and in so much physical pain from pushing my body so hard with such little fuel, but I can’t let myself rest. This anxiety, this agitation – it forces me to move. When I rest, I see the laxity in my thighs. When I rest, the thoughts roar loudly and I have to do something to get rid of them. I can’t stop. I have no choice. I have to complete the compulsions. I have to relieve the mounting pressure in my chest and silence the noise inside my head. I have to make everything okay. I am so afraid to let go of all the terrible behaviours that have been sustaining me for this long. I mean, I don’t want to be this, but I can’t seem to survive my life in any other way. I always end up here and I hate myself for that. I hate myself with such terrifying ferocity. I hate everything that I am, everything that has led me to this point. I want to tear away the skin that houses my pain. I want oblivion. I punish myself every day – starving, self-harming, downing painkillers like candy to try and sleep, forcing myself to push through the feeling that my body is ripping itself apart, but it’s never enough. Nothing ever feels like enough. I don’t know exactly what I’m trying to achieve anymore. An escape from my pain? A way to silence my thoughts? Punishment for who I am? Self-destruction and death? All of it? I just don’t know what else I have left to give. I don’t know if I believe that I’m worth fixing. I don’t know if I believe in anything anymore. I feel so dead inside that it hurts. 

Given my current physical health issues, the state of my mental health and a number of awful reactions to psychiatric medications in my past, we have decided that starting medications as an inpatient will be safer and more beneficial for me. I don’t really know how I feel about it. I guess I’m simultaneously a little relieved and a little defeated. I want this to work. I need this to work. I need to learn how to cope with my life more effectively. I know that I need to do all of the hard work, but I hope that a well-rounded treatment plan will provide a soft glowing light, a flickering roadmap, that will help my mind find its way home.

Scratching the surface

*CONTENT WARNING* This post discusses stillbirth/late pregnancy loss.

Sometimes I honestly wonder why I’m still here. At each devastating junction in my life, people have wondered aloud how I’m surviving it, as though maybe I shouldn’t want to, as though maybe this life of mine is just too damn sad. I admit that sometimes in the depths of my despair, I’ve briefly felt the same – maybe these events, which are each painful in their own right but incredibly traumatic when they occur as an endless cascade, are some divine sign from the cosmos that my life is faulty, unfixable, a dead end.

Many of my current difficulties come from my inability to translate my present circumstances into the vision I had for my future. Try as I might, I can’t make my life fit that vision anymore. The pieces of my life are a little jagged and misshapen, sewn together haphazardly and imperfectly. No matter what I tell myself, that feels like failure. 

It’s a problem with perception. I give so much weight to the undesirable things, the things that cause pain and suffering, and then I form concrete opinions about my entire life based on those isolated events. Those particular events touch on some deep-rooted fears inside of me, fears about what makes my life worthwhile I devote far too much mental energy to them, until the memory of those events overshadows everything else. I don’t do it intentionally, but it’s hard to focus on anything else when I fall into this cycle of fear. And that’s where I’ve been for far too long – shrinking inside of myself because I’m afraid of my thoughts and memories. I can always feel them, pressing against my chest, choking the corners of my mind and eating at my edges until I no longer recognise myself. And the more weight those thoughts carry, the more fear I inevitably feel, until it becomes this constant circle of poor choices to try and protect myself from pain. All the while, the fears keep growing and mutating and sucking the life out of me, until my window of tolerance narrows and surviving myself feels impossible. 

Fear is a normal human emotion, but anxiety convinces us that the way we respond to fear will change an outcome. Lately I’ve been thinking a lot about my fear in relation to my pregnancy and stillbirth. During my pregnancy, I was deathly afraid of losing the baby. I’m not religious, but from the moment I discovered I was pregnant, I’d whisper prayers to the empty air. It was a tedious litany that became my tether to sanity. I’d plead and make desperate bargains with the universe to ensure my child would enter the world unscathed. Anything to silence my head. The cracks were already beginning to form in my relationship with my (now ex-) husband, spider-thin wounds that we were too preoccupied to notice, and I remember promising the darkness I’d sacrifice our relationship in a heartbeat if it meant my baby would be okay. I’m ashamed to admit that even now, because it sounds terribly heartless. I have no real rationalisation for it except that I was afraid. I’d watch this silent reel of horrific images play over and over again in my mind and I’d feel overwhelmed by my futility, so I’d pray. It became a ritual, a way to comfort myself in the face of the unknown. I somehow convinced myself that it would stop the bad things from happening to me. My fear would protect me. My fear would give me control.  

But the fear didn’t change anything – life was going to take my baby and my marriage in the end anyway. As my pregnancy progressed, multiple defects were discovered, defects that the doctors informed me were not conducive to life. The initial bad news arrived on my 25th birthday when I attended a routine ultrasound. Instead of a celebration with candles and cake, my birthday became the day I was told that something was catastrophically wrong with my baby. I remember tears streaming down my face as a needle was inserted into my uterus to collect a sample of amniotic fluid, the doctor’s gentle voice ringing in my head. You need to prepare yourself for the likely possibility that your baby won’t survive with these abnormalities. Each additional scan just revealed further problems. She had half a heart. One of the major blood vessels connecting her heart and lungs was absent. Her stomach, liver and intestines were growing on the outside of her body through a massive opening in her abdominal and chest wall. She had stunted lumps for lungs because her chest cavity was too small to allow for proper growth. Every new revelation felt like a brutal kick to the stomach. Everything in her tiny little body was distorted and broken and wrong. I just couldn’t breathe. I just couldn’t process how wrong it all was. Each defect on its own was incredibly unlikely, but the unique combination of issues was almost unthinkable. The doctors reassured me I’d done everything right, and told me it was just incredibly bad luck. They always apologised afterwards, as though they knew how empty those words felt in the face of my fear. I mean, this wasn’t how things were meant to be. I was meant to take my pink squalling baby home from the hospital, not a tiny handful of her silent ashes in a little white box. But that’s what eventually happened – her life was over before it had even properly begun, and I was just paralysed by my utter helplessness. I had failed. I had failed.

I had been so convinced that my fear would grant me some kind of power to control my fate, but in the end, the fear only controlled me. It controlled me during my entire pregnancy. It controlled me on the day I finally delivered my baby girl, just to watch her die. It controlled me as I held her cold, broken little body and wondered how the hell I would ever let go. It controlled me as I walked away from that hospital without her, and then shortly after away from everything that symbolised my loss. It has controlled me every day since. 

My terrible imaginings became my reality. Everything that happened during my pregnancy, delivery and the remainder of that hospital admission unfortunately meant that the reality ended up far worse than I had ever imagined. As a result, my brain has convinced itself that every fear I experience is rational, will inevitably come true and is somehow all my fault. That’s obviously not the truth though. The truth is that the universe is full of odds and probabilities, and we’re all on the losing end sometimes. But that doesn’t stop everything that has happened to me from feeling more like a personal failing than the truth. The truth is harder for me to accept because it involves relinquishing my need for absolute control – to my damaged mind, that feels like giving in, as though I’m just going to spend my life waiting for my fears to morph into actuality, always wondering what horrors life has in store for me next.

I can’t live my life like that. Being afraid won’t stop life from happening to me. It’s never worked before, and I doubt it’s going to work now. The future feels so incredibly terrifying at times – when things have gone wrong before, it’s easy to believe that they will inevitably go wrong again. But that isn’t necessarily true. Tomorrow also represents a possibility, the potential for things to improve. The only way I can move forward is to accept my fears and live my life despite them. That’s what I’m working on. Acceptance of my past. Acceptance of my current situation and my physical limitations. Acceptance of my anxiety and fear. Maybe if I stop trying to wage war against my fears, they’ll fight back a little less in return. Maybe if I make some room for them instead, I’ll finally find some space to grieve.

Relapse. 

My brain won’t stop rolling around in my head. It’s banging against my skull as though it’s trying to escape. I don’t really blame it. I’m not in a very good place. 

Life is really overwhelming me. The simplest decisions and the most straightforward routines suddenly feel impossible. The volunteering, the doctor’s appointments, therapy, finding time for family and friends, rest rest endless rest – it’s all just suffocating me. I can’t make sense of it, because I used to cope with far more than this. I used to set goals and work myself to the bone to get everything done. But I have nothing left anymore – no drive, no focus, no control. Life is just happening to me, around me, and I feel like some ghostly apparition, lingering in a life that is no longer really mine. My world simultaneously feels crowded and vacant. Nothing is enough, yet I feel so claustrophobic. I’m a walking contradiction, and I can’t breathe through the senseless chaos of my emotions. I hide myself away to try and find a little silence, to try and catch my breath, but life just keeps knocking on my door.

The exhaustion, the sickness, the isolation, the fear – they all invite mental collapse, and that is exactly what’s happening. I’m just watching the emotional landslide bury me. The panic attacks are back with a vengeance. Every time they happen, I’m overwhelmed by this dire certainty. My brain is going to kill me. I feel so powerless against such punishing emotion. This darkness inside of me is just so relentless and insatiable. It keeps gnawing at my edges until there’s no space left for me.

I need space to breathe, but I can’t find it anywhere. I’m so full of hurt and it’s eating me alive. There’s too much pent-up pain and it just won’t fit inside me anymore. Instead, it pours out of every crevice in my mind like a waterfall, an infinite cascade of poisonous waves. And I’m a solitary island in the middle of it all, watching myself crumble under the weight of the deluge, telling myself there is no other way.

Because I don’t know how else to do this. I don’t know how else to survive. 

—–

It’s been recommended that I start back on medications for my mental health, so I am seeing my doctor next week to organise a new referral for my psychiatrist. I don’t want to be here doing this – it’s been nearly 3 years since I weaned off psychiatric medications and I honestly thought I was beyond them – but I don’t know what else to do. I just don’t want to feel like this anymore. 

 

What you see / What I feel

As my health has improved a little, I feel that my level of support has drastically dropped off. I know it’s not that people necessarily care less. I think it’s more that they’re hopeful I’m finally over the worst of it, and that hope blinds them a little. We never really understand chronic illness until it directly touches our lives. We’re always taught that illness is something to fight; a battle that we wage upon our bodies and inevitably, a battle that we win unless we die. In our minds, there is no middle ground. It’s hard to accept that there are problems in our lives that don’t always have solutions. So when it comes to chronic illness, people see improvement, no matter how small or inconsistent, and that’s all they want. They want the smooth upward trajectory towards fully recovered. This inevitably meant that when I started having some good days, the bad days lost their significance to those around me. 

The problem is that the bad days never lose their significance to me. Even my ‘good’ days, the ones where I’m doing more, are never easy. I personally feel as though I need more support right now than I ever have, but it’s difficult to make others understand why. Everyone is so focused on how much better I’m doing, and sometimes that makes me feel as though my ongoing difficulties are being undervalued or forgotten. Comments such as “You’re only feeling bad because you did something” or “At least you’re better than you were before” are likely meant to encourage me, but they feel dismissive, as though I no longer have the right to admit I’m struggling.

And I am struggling. I really am. Sure, I’m doing more than I was and it’s incredible, but in the grand scheme of things, I’m still not actually doing all that much. I’m still forced to spend more than 75% of my time recovering (or resting prior to activities to lessen the severity of my crashes). People don’t see the significant accommodations I’m forced to make to do even a fraction of what most people do on a daily basis. There are still a vast number of concessions being made behind the scenes, even if it seems as though I’m functioning normally on the outside. People also forget that doing more doesn’t automatically equate to being recovered. I am still plagued by a plethora of symptoms on a constant basis  – dizziness, lightheadedness, tachycardia, pre-syncope, muscle weakness, significant muscle pain, severe fatigue, brain fog and difficulty concentrating, constant debilitating headaches, nausea, sore throats, exercise intolerance, tingling, numbness – the list goes on and on. Those symptoms are all still there. Sometimes they’re better and sometimes they’re worse, but more often than not, I’m pushing through them and paying for it later. 

And that’s the part that messes with my head the most – knowing that everything I do has unpleasant physical consequences. The symptoms I usually experience inevitably flare after most activity. Even something as simple as a walking a hundred steps over my normal tolerable limit (which isn’t very high in the first place) can incapacitate me for days. How many people would choose to put themselves in situations that cause suffering? Who would want to? But I have no real choice in the matter. I’m forced to do it over and over again to try and move forward with my life. It’s a constant battle with my mind, because I hate feeling that way. I hate being forced back into bed. I hate wondering if each backwards slide will be a permanent decline. I hate the fear that I will end up back where I was before. I always push past it, because I refuse to let myself be governed by fear and I refuse to stop trying, but it is such an emotionally exhausting process and sometimes I just feel so burnt out by it all. 

People only see the external things – everything I’m doing, rather than everything I’m feeling, and they assume I’m better. Or by some bizarre double standard, I’m just expected to put up with a lot more of the awful, because it’s how things are for people like me. Things could be worse – things have been worse – so you can’t complain. It hurts, but I keep plugging along and everyone just keeps telling me how great it is now, as though I don’t understand. But it isn’t that simple. Of course I think it’s great. I know it’s better than it was before, but that doesn’t necessarily make it feel any better in the present moment. It doesn’t mean it’s any easier, and as much as I wish otherwise, it doesn’t mean I’m fully recovered.