Tag: Writing

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?

mendingthebrokenLeave a comment

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

Myalgic Encephalomyelitis and me

mendingthebrokenLeave a comment

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

Behind Closed Doors

mendingthebrokenLeave a comment

A question I’ve been asked a lot before is ‘what is life like on a psychiatric ward?’ and I don’t think there’s a description I can give that fully sums it up. It changes from ward to ward, patient group to patient group and things like ward dynamics, staff, type of ward and outside influences can change how things are dramatically. For example, the ward I’m currently on is in the process of being completely split into a male ward and a female ward so there is a lot of building work going on. This means that it’s loud, busy and often overwhelming. It has definitely impacted how this admission has been compared to when I was here 4 years ago. But I’ll try and describe what life can be like on wards – this is purely based on my experiences as a patient (and former staff member – I used to work as a HCA at a Priory hospital so I can comment based on that experience too). It’s also important to note that I am referring to acute wards (the most common type of ward) as this is the only kind of ward I have experience of – I am not talking about PICU, secure services, rehabilitation wards etc which all have very different presentations too.

This is fairly typical of modern bedrooms on psychiatric wards – obviously not all wards will look like this, but it was a picture that seems fairly in line with my experience of wards.

Thinking about psychiatric wards can feel like you step into a world that is covered in a veil of mystery, yet also stigma. Patients are kept behind locked doors and, unless you are admitted yourself, or are visiting someone on a ward, things are neatly hidden away. That is, unless a patient absconds, but that’s a whole other kettle of fish and something I’ll leave for another day. So what is life like behind these closed doors? Psychiatric wards serve as a safe space for individuals experiencing mental health crisis and offer a degree of support and treatment for a wide range of mental health conditions. The experience of life on a ward varies hugely from patient to patient, especially as we are all so unique and are all presenting in different ways, yet there are some common threads that tie the experience together.

I think one of the biggest misconceptions about psychiatric wards is that you go in unwell and come out better. On NHS wards in particular there is a big absence of therapeutic work available to patients as this kind of long-term work typically comes in the community (or rehabilitation wards such as those that specialise in trauma therapy or DBT). It’s not that common for wards to have regular therapeutic interventions from psychologists, although in some cases this does happen. I, for example, have just been offered 4/5 weeks of weekly sessions with a psychologist to complete a formulation that will hopefully help to prepare me for discharge. However, the therapy that I really need – trauma work – will come when I am in the community and stable enough to fully engage in it. Patients will typically be discharged once they have stabilised to a degree that they are no longer in acute crisis, but this does not mean that they are well, or even that they are stable by ‘normal’ standards – they are stable enough to be discharged.

Often there is an activities programme put together by the activity coordinators and occupational therapists that work on the ward and this can provide a welcome distraction from the mundane life that patients are forced to experience. This can include things like film nights, cooking sessions, baking, playing games, having coffee mornings, having access to an art room and visits from PAT dogs (I did, of course, save the best until last!) They may also offer things like mindfulness sessions and individual sessions with OT’s to work on individual goals. Programmes like this do help as they engage patients to a degree and get them used to regularly engaging in groups, as well as mixing with other patients (something I’ll come to in a minute). Engaging in groups also shows the MDT that you are working with staff and will work in your favour when it comes to things like requesting leave and, eventually, discharge.

One of the ‘nicest’ aspects of life on a psychiatric ward is the opportunity to make connections with other patients – after all, you are spending all day, every day in the same, fairly confined, space and so you do often get to know each other quite quickly. This isn’t always the case, though, as it does depend on the patient group at the time and how well you ‘gel’ with other patients. However, when connections are forged, they are often deep and meaningful. After all, you understand the difficulties of being in crisis and what life is like with mental illness, may have similar diagnoses, and can empathise with the difficulties of being stuck on a ward, shut away from the outside world. There’s also the opportunity for peer support, as patients can share their experiences and give advice based on situations they have found themselves in – I know I find it much more reassuring when I’m hearing things from someone who truly understands what my life can be like as there is that empathy underlying the discussions.

I was actually having a discussion with a patient the other day. We are fairly similar in age which is always nice, and seem to have a good relationship despite only knowing each other for a matter of days. We were sat in the quiet lounge (trying to escape the hectic nature of the ward at the moment – building work and loud patients aren’t always the best combination for two individuals who need to have quiet time!) and got chatting about our lives and how we ended up on the ward. And as each of us spoke, we found it really easy to slip in different pieces of advice, as well as stories from our lives to hopefully encourage the other. This isn’t always how things happen on wards, however, but it’s a nice bonus when it does!

Something that I think is probably fairly common, yet also not, across wards is the sense of rigidity and routine – it can often feel like there is no routine or structure on a ward, and whilst that can be the case at times, when you take a step back and look at the day as a whole you will find that there is actually a lot of routine and structure. Medications are given at the same time (roughly) daily, meals are always at the same time, groups tend to happen at the same time each week and you have your ward round at the same time weekly as well. When you aren’t able to engage in groups or they aren’t available it definitely feels like there is no structure at all – you seem to aimlessly float around, maybe sitting in the communal area for a change of scenery, but certainly not feeling like there is any semblance of structure to your day. But some of this does give patients a feeling of predictability and order – they know their meds are coming or that lunch is coming up – in a world that can feel so unpredictable and messy.

I could probably go on and on with stories from my admissions, comparing different wards and just generally rambling, but  I’ll draw to a close here. Overall, life behind the closed doors of a psychiatric ward is a complex, interconnected web with so many different threads that draw together. It can vary so much from place to place or time to time but I think that the overall aim is for wards to be places of safety for people experiencing crisis where they can stabilise to a degree before returning to ‘normal’ life to continue their recovery. I hope that by talking about the reality of life on a psychiatric ward it can do a few things: dispel some of the myths and misconceptions that people might have, shed some light on what life is really like whilst an inpatient on an acute adult psychiatric ward, and also foster greater empathy, compassion and support for those who are struggling with their mental health. Whilst we have made great improvements in the understanding and acceptance of mental health in recent years, there is still a lot of stigma that needs to be removed and it is talking that will help to lessen this stigma even more. 

All my love,

Anna x