Tag: life

What You Don’t See in the Hospital Notes

mendingthebrokenLeave a comment

I’m back again! It’s been a while since I’ve written and I’ve spent the last 6 weeks in hospital which I think has inspired this post a little.

(Note: the hospital note ‘excerpts’ are fictional, though loosely related to my medical history)

Presenting Complaint

21-year-old female presenting with widespread joint pain, reported fatigue, and possible post-viral symptoms. Multiple prior admissions for unexplained symptoms. Patient appears anxious. History of suspected EDS and functional overlay. Further investigation not indicated at this time.

You don’t write that I had to crawl from the bedroom to the front door because I couldn’t stand upright. That I clung to the banister like it was a rope on the edge of a cliff. That the GP told me, again, it was probably stress.

You don’t mention the way I’d rehearsed my speech in the ambulance. “Don’t say you’re tired. Don’t say you’re scared. Say it hurts. Say you can’t walk. Say the fatigue is overwhelming. Say it like a symptom, not a feeling.” You don’t see the notes I wrote on mu phone because I was afraid I’d get flustered and forget.

You say I “appeared anxious.” As if that explains everything.

You don’t mention that I smiled to be taken seriously. That I didn’t cry because I knew tears are perceived as hysteria. That I lay on the hospital bed with my fists clenched under the blanket, whispering prayers to myself while a junior doctor asked if I might be exaggerating.

You didn’t see me pull on clean socks even though I couldn’t lift my legs. I didn’t want you to think I was dirty. You didn’t see the notebook where I tracked my pain every hour. The part of me still hoping I could prove it.

You wrote “further investigation not indicated.”

I called my mum in the waiting room, whispered, “They think I’m making it up again.” She said, “You’re still breathing. That’s what matters right now.”

That was the first night I started to believe I might survive this, even if the system didn’t believe me.

Mobility and Function

Uses wheelchair part-time. Patient encouraged to mobilise independently. No structural impairment observed. Advised that deconditioning may contribute to perceived mobility issues. Referral to physiotherapy provided.

Perceived mobility issues.

You watched me drag one leg behind the other and called it “perceived.” You watched me tip over sideways from standing and called it “anxiety.” You gave me physio exercises on a photocopied sheet and suggested I just needed to “rebuild confidence.”

You didn’t ask how it felt to move through a world that isn’t made for me. How I still take the longer route through town to avoid the hill, the stairs, the uneven curb. How I once sat outside a building at university in the pouring rain because there wasn’t a ramp out.

You called my wheelchair “part-time,” as if it’s a job I clock in and out of. As if that isn’t your language, not mine.

You didn’t notice how my shoulders dropped with relief when I finally sat in it. How it meant I could go to the shop again, to the library, to the park. How it gave me my body back. You didn’t hear the joy in my voice when I wheeled myself across the hospital car park for the first time in months.

You didn’t see the nurse who brought me a cup of tea and said, “Looks like you’ve done this before.” Like she saw me.

You didn’t write about the stranger in the corridor who told me, “You’re too young for that thing,” pointing to my chair. Or when I replied, “You’re too old to be that rude,” and rolled away smiling. You didn’t document the power I felt in that moment.

I didn’t lose mobility. I reclaimed freedom.

Nutrition and Feeding

Enteral nutrition via NG tube commenced. Patient demonstrated distress during insertion. Limited oral intake reported. Encouraged to increase hydration. Patient appears disengaged from treatment plan.

The first time they inserted the NG tube, I gagged so hard I bruised my own throat. The second time, I asked if I could hold someone’s hand. A junior doctor reached out wordlessly. You didn’t write about her.

You didn’t write about the tape rash on my face or how the pump beeped at 2am like a fire alarm. How I hated being tethered to a machine and loved it, too. It meant I didn’t have to explain, that my body was nourished. It meant I could rest.

You didn’t see me name the tube. Her name was Nelly. Because if I was going to let something live in my body, it might as well have a name.

You said I was disengaged. But I learned how to test the pH myself. I set up the feeds, monitored the pump, calculated the right overnight rate needed. I became a walking spreadsheet, ironic as walking wasn’t possible.

You never asked how it felt to be constantly fed but still hungry – for flavour, for choice, for something warm and familiar. You didn’t mention that I kept imagining my childhood favourite ‘tuna and rice’, picturing the way my mother always served it with a smile. How I wished I could just eat a normal meal but no longer had the energy.

You didn’t see the nurse who brought me stickers to decorate the pump, or the healthcare assistant who used to turn each feed bottle into a different smiley face each night. You didn’t talk about the friend who came to visit and made me laugh so hard until the tube kinked.

I was never disengaged. I was just exhausted. I am. But I am here.

Pain Management

Patient reports widespread pain, self-rated 9/10. No signs of acute distress observed. Request for opioid medication declined due to potential for dependency and possible drug-seeking behaviour. Advised to manage symptoms with paracetamol and CBT techniques.

No signs of acute distress.

I’ve lived in this body for 21 years. I know how to keep my face still when everything inside me is screaming. I know how to breathe through muscle spasms and dislocations and the grinding, electrical throb in my spine. I know how to speak softly so you’ll keep listening.

You don’t see the hours I spent curled around a hot water bottle, willing the pain to plateau. The pain that doesn’t come in spikes but waves – tidal, relentless, cruel.

You declined my medication request and suggested mindfulness. I said, “Do you want me to breathe my way out of a subluxed knee?” You smiled like I’d made a joke.

You didn’t see the nurse who whispered, “I believe you,” and slipped me a heat pack.

You didn’t write about the laughing fit I had with my sister when I was trying to get up the stairs and we both fell down laughing. Not because it didn’t hurt, but because it did – and laughter was the only way through it.

You didn’t see the wall I decorated with song lyrics and pain scale doodles, keeping them within arms-reach in case I needed to put a number to my pain, again. Or the fact that every day I wake up and try. No matter how shitty I feel.

Not because I’m brave. Because I have to.

Discharge Plan

Medically stable. Fit for discharge. Patient advised to follow up with community team and contact GP if symptoms worsen. No additional interventions recommended at this stage.

Medically stable. That was your way of saying, “We don’t know what else to do with you.” Because I certainly didn’t feel stable.

You didn’t mention the way my heart raced as I crossed the threshold. Not because I wasn’t glad to leave, but because I knew I’d be back. Because stable doesn’t mean safe. It doesn’t mean well.

You didn’t see the way I curled up in bed that night, every joint aching from the journey, every nerve on fire. But also: the softness of my own sheets. The cat who lay on my feet. The way I whispered to myself: I’m still here.

I wrote my own discharge note:

Survived. Scarred. Unseen – but still fighting.

All my love,

Anna x

Is This What Safe Looks Like?

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I recently wrote, performed and shared this spoken word poem on my TikTok account and it seems that a lot of people could relate to it. If you can relate, I’m incredibly sorry, but I also hope you find some comfort in knowing that you’re not alone in feeling this way.

They say,

“Call for help.”

But I did.

And help came

with flashing lights

and cold stares

and hands too firm

for someone already breaking.

“Trust the system,” they said.

But I did.

And the system strapped me down,

spoke over me

called me non-compliant

when I was just

trying not to fall apart.

Safe?

You tell me what’s safe

about being told

your story is “too much”.

That your pain

needs a label

before it gets attention?

What’s safe

about uniforms

that make your skin crawl,

white coats

that feel like warning signs,

and police who ask questions

but don’t really want the answers?

I learned the hard way:

“Safe” is a lie

when you’ve been hurt

by the helpers.

When your cries

get translated into crazy.

When your trauma

gets brushed off as behavioural.

When your body

is treated

but your soul

is left bleeding in the waiting room.

You see,

no one tells you

how much bravery it takes

just to walk through the door

of a hospital

when the last one left scars.

No one talks about

how the ones with the power

can do damage

with a clipboard and a checklist,

with a shrug,

with a sedative

with a look that says,

“You again?”

This is what it’s like to be afraid

of the people you’re told to run to.

To flinch

when the sirens wail

in the streets.

To go quiet

in the presence of authority

because the last time you spoke –

it cost you something.

So don’t ask

why I didn’t tell you sooner.

Why I waited.

Why I lied and said “I’m fine.”

Because when “help” feels like harm

silence becomes survival.

And I’ve mastered the art

of sounding okay

just enough

to stay alive.

But I’m tired.

I want safe

to mean something again.

I want healing that doesn’t hurt.

I want care that listens before it labels,

that asks before it acts,

that sits with me

before it tries to fix me.

Because I’m not a problem.

I’m a person.

And I don’t want to be saved –

I want to be seen.

Here is a link to the original TikTok incase you want to hear it spoken rather than just reading it:

https://vm.tiktok.com/ZNdYwQbUu/

All my love,

Anna x

Flowers Grow in the Valley

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One of my favourite songs is called ‘Flowers’ by Samantha Ebert. It is a song that means an awful lot to me for a lot of reasons, but the main one is this: it is a song that God has used to show me his love and plan for my life on numerous occasions. Here is the story of the first time I listened to the song and how God spoke to me – for some context, this was during my admission to hospital last year whilst I was on the gastro ward just before my transfer back to my local psychiatric hospital.

The day before my transfer back to the psych ward, I had a visit from one of the hospital chaplains. She had visited me a few times during the seven weeks I was there and had always been kind to me, offering words of comfort and prayers during some of the hardest moments of my admission. That day, she told me about a song she had recently come across, one she thought I might like. “It’s called ‘Flowers’ by Samantha Ebert,” she said. “I really think you should listen to it.”

Later that evening, as I lay in my hospital bed, headphones in, I pressed play. The melody was soft, delicate, and the lyrics hit me in a way I hadn’t expected. “I’m a good God, and I have a good plan, so trust that I’m holding a watering can, ’cause flowers grow in the valley.”

Tears welled in my eyes as I listened. The words felt as if they had been written for me, a direct reminder that even in my lowest moments, God had not abandoned me. That He was still here, still holding me, even when I felt completely lost. I listened to the song on repeat until I fell asleep, letting those words seep into the cracks of my broken heart.

The following day, I was transferred back to the psych ward. It was an exhausting process, as hospital transfers always are. The endless waiting, the signing of forms, the final checks and cannula removals, before I was wheeled through the corridors, leaving behind the world of NG feeds and IV drips for another round of locked doors and psychiatric reviews.

I barely had time to settle back into my room before there was a knock at the door. It was one of the occupational therapists, someone I had always found easy to talk to. She smiled at me, holding out a small watering can and a packet of flower seeds. “You missed the group activity this morning,” she said. “We were planting flowers, but I thought maybe you’d like to do it with me now?”

I stared at her, my breath catching in my throat. A watering can. Flower seeds. Flowers grow in the valley. I felt my heart pound, an overwhelming sense of something greater than coincidence washing over me. I blinked back the tears threatening to spill over and nodded, unable to find the words to explain just how much this moment meant to me.

We sat on the floor of my room, scooping soil into small pots, carefully pressing seeds into the earth. As I watered them, I thought about how God had sent me a reminder in the most unexpected way – that I was still being nurtured, that even in this valley, something beautiful could grow.

I’ve included a link to the song here – I really recommend listening to it!

All my love,

Anna x

Myalgic Encephalomyelitis and me

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My journey with Myalgic Encephalomyelitis (ME) is one that I could never have anticipated, and yet it has shaped my life in ways I am still trying to comprehend. It has been four years since I received the diagnosis, which, in the grand scheme of things, is not that long. But to me, it feels like a lifetime. A lifetime of limitations, of losses, of learning to navigate a world that no longer fits the way it once did.

Of all the chronic illnesses I have been diagnosed with, ME is the one I would get rid of in a heartbeat. It is cruel beyond belief. It strips away the ability to live life in any predictable or reliable way. There is no cure, no universally effective treatment – only management, and even that feels like a fragile balance. Some days, I can do more. Other days, even sitting up is too much. The unpredictability of it is one of the hardest things to live with. 

There have been times over the last four years where I have been completely bed-bound, unable to do anything but lie in the dark, too exhausted and in too much pain to even sit up. Those periods were terrifying, but I always held onto hope that I would find my way back to a more functional state. And, at times, it did. There were moments when I could leave my flat for short trips, where I felt like I was reclaiming slivers of my old life. But now, since sepsis, those moments are fewer and farther between.

I can now only leave my flat for essential appointments, the ones that must be attended in person. Anything that can be done from home, I do remotely. My world has shrunk in ways I never thought possible. I require a wheelchair to mobilise outside because my legs are too unstable to carry me for any meaningful distance. Inside my flat, I often rely on a walking stick to move between rooms. Even then, most of my day is spent in bed, waiting for the couple of ‘functional’ hours I am granted each day. Those brief windows of time where I feel somewhat capable of doing small tasks, of engaging with the world beyond my bed. 

One of the most distinct and cruel markers of ME is the way your body punishes you for overstepping its limits. When I push too hard, even slightly, I pay for it. The flares are brutal, and the warning signs are unmistakeable. When I have overdone it – whether that means sitting up too long, engaging in too much conversation, or even just focusing too hard on something – I feel it almost immediately. My legs burn as if they are on fire, a sensation so intense that it is impossible to ignore. It is my body’s way of screaming at me that I have no rested enough, that I have ignored its pleas for stillness.

The thing about ME is that it is not just about fatigue. That word does not do justice to the bone-deep exhaustion that no amount of sleep can fix. It is like being weighed down by an invisible force, making every movement feel like wading through cement. It is pain that radiates through my muscles and joints, an unrelenting ache that never truly disappears. It is cognitive dysfunction – brain fog so thick that I forget simple words mid-sentence, struggling to focus, and sometimes feel as though my mind has simply stopped working altogether. It is sensory overload, where lights are too bright, sounds are too loud, and even the touch of fabric on my skin can feel unbearable.

Since sepsis, my body has become even more fragile. I used to have at least a little energy to ration throughout the day, but now, every action comes with a cost. The simplest tasks – brushing my teeth, getting dressed, making a cup of tea – feel monumental. I have to think about every movement, weigh whether it is worth the energy expenditure, knowing that if I push too far, I could be bedridden for days. My life has become a delicate balancing act between doing too much and not doing enough.

Sleep offers no relief. No matter how many hours I spend resting, I wake up just as drained as before. And even on nights where exhaustion consumes me, sleep doesn’t always come easily. The pain, the discomfort, the sheer weight of my body’s brokenness keeps me tossing and turning, desperate for rest that never truly arrives. When I do sleep, I wake up feeling like I have run a marathon in my dreams, my muscles aching as if I had been fighting through the night. 

The isolation that comes with ME is another layer of cruelty. I have lost the ability to maintain relationships the way I once could. I miss out on gatherings, on conversations, on simply being able to exist in the world in a way that feels normal. Friends and family understand to an extent, but unless someone has lived through it, they can never fully understand. My dad was actually diagnosed with ME when I was a baby and, though he doesn’t struggle any more, it means that my family have a very good understanding of my day-to-day life.

I miss spontaneity. I miss being able to say yes to things without immediately calculating the toll it will take on my body. I do not know what the future holds for me in terms of ME. It is scary waking up each day, not knowing how the day will go, what your body will cope with. And it is terrifying when you experience a decline – is this what is going to tip your body over the edge? Is it just a temporary flare, something that’s going to stick around for a long time, or, god-forbid, be permanent? 

What I do know is that, since sepsis, things have been worse than ever before. I have lost more than I ever thought I could, and I am still trying to come to terms with that. But I have also learned resilience in a way that few people understand. I have learned to exist within my limitations, to navigate a life that looks nothing like the one I imagined. And, most of all, I have learned that survival is not just about living – it is about adapting, about finding ways to exist within the cracks of what was lost, about holding onto hope even when it feels like everything is slipping away. 

My next post is going to talk about what people with ME want you to know, as well as exploring some of the ways other people with the condition describe it to others.

Until then,

All my love,

Anna x

Not Your Time

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Content Warning: This post talks about suicide. Although no details are given please be mindful of this and don’t read on if this is something that might be triggering for you!

Have you ever had someone say to you, “It’s clearly not your time,” after a suicide attempt? If you have, you probably know how cliche it sounds. Those words can feel empty, as though they’re meant to close a conversation rather than open one. Yet, as much as I’ve resisted the phrase, I can’t deny the weight it holds in my own life. After surviving multiple attempts to die – despite every intention to leave this world – I’ve been forced to confront the possibility that those words might carry a truth I hadn’t been willing to see.

I’ve tried. Many times. In moments of despair, I’ve done everything within my power to end the pain. And every single time, something has stopped in from happening. Maybe it was an intervention of a friend, the police or hospital staff, or a twist of fate that kept me alive. Maybe it was sheer luck, or as I’ve come to consider more and more, maybe it was because it wasn’t part of the plan that God has for my life.

The idea that survival is part of a greater plan is as difficult to accept as it is to dismiss. If I believe that God has a purpose for my life – and some part of me does – then surviving when I was ready to die suggests that my story isn’t over yet. If my time had come, wouldn’t I have succeeded? Wouldn’t I finally have found that escape?

But believing in that purpose doesn’t make the pain vanish. If anything, it complicates things. I’ve found myself asking why God would keep me here, struggling, when I was so ready to let go. What possible reason could justify the agony that led me to those moments in the first place? It’s a question I don’t have an answer to – at least, not yet.

If you’re reading this, maybe you’ve asked yourself similar questions. Maybe you’ve also faced moments when death seemed like the only way out. And maybe, like me, you’re still here, unsure of why. Here’s the conclusion I’ve started to reach: survival might not feel like a gift in the moment, but it’s an invitation to keep going. To keep searching. To keep asking what’s next.

When I think about the times I’ve survived, I realise that those moments weren’t random. They were filled with small interventions – a text from a friend, a hug from a family member that I so desperately needed, the police turning up at exactly the right moment to stop me doing something I wouldn’t be able to undo. Those moments weren’t the answers to all my questions, but they were signposts pointing me toward something bigger.

Wrestling with God’s Plan

If you believe, as I do, that God has a plan for each of us, then the idea that “it’s not your time” takes on a heavier, more significant meaning. If God has kept me here through all of this, then it would stand to reason that my time to leave this world is not now – because if it were, I would be gone. Period.

But it’s hard to reconcile the pain and hopelessness that drive someone to attempt suicide with the concept of a loving God who is guiding everything. It can feel cruel. Why keep me here, God, if it hurts this much? Why not let me go when I was so ready, so certain?

I don’t know exactly what God’s plan for me looks like. But I’ve started to think that surviving is part of it. Being here, despite everything, is part of it. And maybe writing this, sharing this, is part of it too.

“It’s still clearly not your time” still sounds cliche to me. It probably always will. But maybe the reason it’s such a persistent phrase is because there’s a deep truth buried in it. If you’ve survived something you didn’t think you could survive, it’s worth considering that there might be a reason for that. Not in a shallow, sugar-coated way, but in a profound, weighty way that calls up to look deeper into our lives and our purpose.

So here I am, still trying to figure it all out. Still asking questions. Still frustrated. But also still here. And if you’re reading this, you’re still here too. Maybe that’s worth something. Maybe that’s worth everything.

‘But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.” – 2 Corinthians 12:9

All my love,

Anna x