Writings

These essays are drawn directly from lived experience of serious neurological illness. They stay close to what CIDP, treatment, hospitalisation, and recovery actually feel like from inside the process rather than after it has ended.

They are written for patients, families, and clinicians who want to understand the reality behind the clinical language.

CIDP Experience

These essays follow the timeline of illness as it unfolded rather than being written after recovery.

A connected series of personal essays documenting life with Chronic Inflammatory Demyelinating Polyneuropathy from the first dismissed symptoms through diagnosis, treatment escalation, intensive care, rehabilitation, and the ongoing work of recovery.

They are written for people living with CIDP, those supporting someone through it, and clinicians or readers trying to understand what serious neurological illness involves beyond test results and treatment plans.

What I Would Tell Someone Newly Diagnosed With CIDP

You have just been told you have CIDP. This essay is not written to frighten you and not to give false hope. It is written because when I was diagnosed I could not find an honest account of what the journey ahead might look like. The treatments that may not work. The mental side nobody warns you about clearly enough. The people who will and will not show up. And what the condition actually demands from the person living inside it.

Living With CIDP: My Story of Illness, Intensive Care, and Recovery

The full personal account from the first signs of weakness in Lagos through diagnosis, hospitalisation, and the long process of rebuilding. This is the starting point for understanding the journey as it unfolded.

Why CIDP Recovery Can Be Slow Even When Treatment Is Working

Steroids that made things worse. IVIG that gave hope then stopped working. Plasma exchange. Mycophenolate. Cyclophosphamide. Rituximab. A bone marrow transplant that ended with a lung collapse. This is not a medical summary. It is what each treatment actually felt like, and what it cost.

When CIDP Affects your Breathing

Most descriptions of CIDP focus on weakness in the hands and legs. Few describe what happens when the illness begins to affect the muscles that keep you breathing. This essay recounts ten months on ventilatory support across four hospitals and the slow return to breathing room air without supplemental oxygen.

When Nobody Knows What Is Wrong: The CIDP Diagnosis Journey

The early stage of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) is often defined by uncertainty rather than diagnosis. This essay follows the months of worsening symptoms, repeated medical visits, and unclear answers before a nerve conduction study finally identified what was happening. It is written for anyone still in that difficult period of knowing something is wrong but not yet knowing why.

When CIDP Takes Swallowing

Losing the ability to eat is not something most people associate with Chronic Inflammatory Demyelinating Polyneuropathy. This essay describes what it was like to move from eating normally to tube feeding, living with severe thirst during a cuffed tracheostomy, and learning to swallow again after eight months without solid food. It is an account of how the body forgets, and how it slowly remembers.

When CIDP Affects The Mind

CIDP affects more than movement and sensation. It can also change certainty, independence, and the effort required simply to stay present each day. This essay describes what depression during severe CIDP felt like from the inside.

When I Finally Accepted the Wheelchair

When the wheelchair was first offered, I said no. By the time my illness reached its worst, a wheelchair was no longer even an option. I was being moved on a stretcher, including to Sunday Mass at Salford Royal Hospital.This essay is about what changed between refusing support and understanding what independence actually meant.

CIDP: When the System Hands You Over

After ten months in intensive care, I transferred to a community rehabilitation facility expecting to continue the progress I had built. What I found was a different plan, unmet referrals, limited equipment, and occupational therapy sessions that began with the question, what do you want to do today? This essay is about the gap between hospital rehabilitation and community rehabilitation, and why patients need to know about it before the transfer happens.

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Essays on Recovery and Identity

Reflective essays drawn from the experience of serious illness examining what happens to identity, independence, and self-worth when the body stops cooperating, and what the slow work of rebuilding actually demands.

Fighting The Wrong Battle

During my illness I was fighting on two fronts. After each confrontation my body weakened, stiffened, and slipped back to its lowest point. The people I was fighting were strong and agile. I was not. This essay is about the battle that was costing me my health, the words sympathy and entitlement that stopped me, and where I finally put my energy.

Recovery Without Performance

There is a version of recovery people expect to see. Progress that is visible. Milestones worth reporting. This essay is about the harder version , the one that unfolds without an audience, without breakthroughs, and without any guarantee that the effort is working.

How I Continued Writing After CIDP Took the Use of My Hands

Writing began during rehabilitation in Southport as anger and distraction. The problem was that CIDP had taken the use of my hands. This essay describes how two care staff members sat with me and typed while I spoke, why 3am was its own kind of frustration, and how a head-tracking device from the North West Assistive Technology service eventually gave the words back.

When the Technology Gets Better

The North West Assistive Technology team arrived this week with an upgrade I did not know was coming. The Quha zono X connects to four devices through a single head gesture. The first day was frustrating. The second day taught me what the demonstration had not. This essay is about learning a new device mid-recovery and what it means when the technology keeps improving.

The Kind of Miracle I Was Waiting For

At first, I thought accepting my condition meant giving up on healing. I later discovered that acceptance and recovery can exist together, and that hope does not disappear when expectations change. This essay reflects on the kind of miracle I was waiting for, and the kind I eventually began to recognise.

Identity Without Output

Before illness, identity rested on capability, independence, and forward movement. When those foundations disappeared, a different question emerged: who are you when productivity is no longer available as proof of progress?

Guarding the Mind

Illness can take many things from you. I was determined it would not take my mind. An honest essay on depression during hospitalisation, the decision-making capacity you must protect, and the small things that make it possible to keep going when everything feels impossible.

Tiara and the Quiet Strength of a Child

She was not yet one year old when the illness worsened. She patted my back when I could not breathe. She climbed down from the bed when I fell and stayed with me on the floor until morning. This essay is about what she gave me without knowing she was giving anything at all.

Dependence and Dignity

Learning to accept consistent help can feel like losing independence. This essay explores the difference between needing support and losing self-worth, and why dependence and dignity are not opposites.

The Many Faces of Pain

A palliative care consultation. A misplaced tube. CPR on the patient opposite. An alphabet chart becoming the only voice available. Pain did not arrive once in this story. It arrived in layers, and each layer changed what survival required.