I had a routine laparoscopic surgery 16 days ago. It did not go so well.

As a person living with a disability, any type of medical intervention can be complicated. With chronic pain and a neurological disorder (Functional Neurological Disorder or FND), the symptoms that may arise afterwards are often unpredictable. I may need to adjust or even relearn certain functions post-surgery. I have had surgery in the past, so I know the importance of taking precautions.

I took the necessary precautions to ensure a smooth recovery. I informed my workplace that I might need extra time off, cancelled any travel plans for the next 2-3 months, and communicated with my allied health professionals about the surgery. This way, we can continue my exercise and physiotherapy sessions without interruption and change any added supports as needed.

The longer I take to recover from an illness or procedure, the more my routine becomes disrupted. This leads to a ripple effect: increased pain, limited movement, tremors, and muscle weakness. Ultimately, if I cannot return to a normal routine within 6 to 8 weeks, I may need to go back to the hospital for intensive rehabilitation.

When things go wrong anxiety hits. I find it hard to slow down. The times where I do not have a choice make me really frustrated.

In the past, from a disability perspective, illness and complications related to recovery have had a negative impact on my career, relationships with family, and general belief that yes, I am this complex at times.

Over the past three weeks, I have been genuinely touched by the compassion and understanding shown by large government-funded organisations, advocacy groups, and my own employer during my recovery journey. It has been a breath of fresh air to experience a supportive environment where there has been no pressure, just a focus on healing and reasonable adjustments. One organisation even rescheduled an appointment four times to accommodate the challenges posed by my illness/disability, doing so with such grace and understanding.

I find it hard to express how grateful I am for the responsible and respectful way everyone has approached my needs. I genuinely appreciate my employer and the extra efforts made by the board. I owe a debt of gratitude to my team, who have stepped up to support me during this time. Their kindness has made a significant difference as I work towards recovery.

One of the most complex issues I face is my extensive medication regimen—which includes medications for nerve pain, muscle relaxants, and anticonvulsants—many doctors are hesitant to prescribe pain relief after surgery. They often assume that because I am on a significant amount of medication, my pain will be manageable and can be treated with that mix alone. This assumption is incorrect, and as a result, I experience considerable pain until I recover. Additionally, they often stop medications that are used “off-label,” such as those for epilepsy and antidepressants.

It often takes days of respectful discussion and the provision of evidence, like a prescription or a phone call to one of several medical specialists, to find a resolution. Additionally, it is common for me to need help from specialists to gradually reintroduce these medications when I am discharged.

The first night in the ICU, I didn’t sleep. This was likely due to one omitted medication needed for pain management and sleep.

It was not a pleasant experience.

Complications during the surgery resulted in significant blood loss. After a hernia and abdomen surgery, I found that I could no longer swallow and had a unusual pain in my chest.

We later discovered that I required a secondary surgery to stretch my oesophagus and repair a haematoma around my hiatus hernia repair, review the haematoma behind my chest cavity, and review all the work done in the first surgery. This procedure was completed through an endoscopy, known as oesophageal dilation and involved opening the narrowed area of the oesophagus.

(When the oesophagus is too narrow, it can hinder the passage of food and liquids, which makes swallowing difficult. Taking my medication was a 2-hour long struggle, because I needed to space it out to allow each dose to pass through a very narrow section of my oesophagus into my stomach before repeating the process.)

Due to a narrowed oesophagus, the first three days were quite challenging. I became significantly unwell very quickly, vomiting after each meal, drink, or medication. I spent two days in the hospital and one day at home. On the day I was at home, I developed a high fever, chest pain, chills, and it was agreed that I should return to the hospital. I felt immensely discouraged about this decision; however, my wife insisted that I call the hospital. They encouraged me to return immediately.

I became so dehydrated that upon second admission, the doctor needed to use an ultrasound machine to find my veins to start a new IV antibiotics.

That night, I was admitted to the surgical ward and underwent a CT scan (it is quite a challenge to take oral contrast when you can’t swallow). After the CT scan, I was kept nil-by-mouth for the next 30 hours while they arranged for an operating theatre and developed a plan. During this time, it was also confirmed that I had developed an infection after my surgery. This infection was identified as pneumonia in my left lung.

I was admitted for 3 days for IV antibiotics and came home for a second time 4 days later.

I tried to go back to my normal routine, made it back to one day of work, locked in all my allied health appointments (think I had six booked for that week (all at home)).

Unfortunately, the second day home I began to receive similar symptoms (shivering, cold sweats, pain in the back, chest cough). The night before the return my temperature/s were near and over 40 degrees, and I had extremely low blood pressure (not a good thing for a person with mobility issues).

My ‘routine’ specialist appointment turned into a day of blood tests, CT scans, more bloods tests, multiple checks on my blood pressure (they could not believe how low it was) and watching my temperature.

So, my third hospital admission in less than 12 days (or only 3 days at home since initial surgery).

Unfortunately, despite reassurances from my GP, specialist, and the hospital that my infections were clear, a CT scan revealed that I have lower left lobe pneumonia. Additionally, like earlier scans it still showed spots on my lungs from the originally diagnosed pneumonia, and there is a concerning crackle in my breathing.

Further blood tests, a COVID test, and fluid swabs were conducted. It turns out I have picked up the Human Metapneumovirus (HMPV), which affects my breathing, and brings with it a nasty cough and insane fevers. All of which have worsened pneumonia symptoms.

It has not been a good week, and it looks like I will need to stay in the hospital for an additional seven days, undergoing treatments to ensure my chest is still clear this time.