For months, I’ve been dealing with a maddening, persistent, post-herpetic itch. This is my story. 

“She felt it mainly on the right side of her head. It crawled along her scalp, and no matter how much she scratched it would not go away. ‘I felt like my inner self, like my brain itself, was itching,’ she says. And it took over her life just as she was starting to get it back.”

I’m not entirely sure what drew me to The Itch, a New Yorker article about the phenomenon of chronic itch. I read it in 2009, was fascinated and horrified by what unfolded, and thought about it often in the subsequent years. How awful and unlucky to have an itch that could never be relieved, I thought. 

Fast forward to July 2024. I’m several months past my first-ever attack of shingles and I’m still dealing with post-herpetic itch (PHI) – that is, I have my own itch that can never be scratched.

Shingles is an awakening of the same virus that causes chickenpox. If you had chickenpox as a kid, the virus hides out in your body until it gets reactivated. With shingles, you’re treated to intense nerve pain in the area affected, a blistering rash that itches and weeps, and a general feeling of unwellness I can only describe as “mouldy”.

Affecting only a small percentage of people, PHI is a condition in which the damaged nerve endings in the area of the shingles rash continue to cause itching and discomfort long after the rash has disappeared. In my case, I had a severe case of shingles with serious symptoms, and as a result, the nerves in the affected area (my torso and lower back) are taking their time to come back online. The sensation that my brain is receiving from the damaged nerves is an odd mix of numbness and a maddening, persistent itch.

It all started in February this year. I had not long returned from a road trip to Wellington to visit friends and whānau. The weather was warm and sunny. I was upbeat. A day or two later, I had a bout of vertigo which jolted me out of my post-holiday haze. Valentine’s Day came and went. The following Sunday, I was experiencing intense abdominal pain. By Thursday morning I was in the doctor’s office getting a shingles diagnosis just as the rash was starting to appear.

My usual doctor was unavailable, so another doctor in the practice delivered the news. She was matter-of-fact, remarking that shingles is common in people of my age (I’m 53). After a detailed explanation of what causes shingles and how it typically unfolds, I was given a prescription for antiviral tablets and sent on my way with a distinct lack of urgency, blissfully unaware of what might happen if I was one of the unlucky ones who had a severe reaction to the condition.

In the dark weeks that followed, I discovered there is not much information available about severe shingles and its aftermath. I realised that something was wrong when, after three weeks of unrelenting, excruciating pain in my torso and lower back, my doctor started to throw anything and everything at it, and finally admitted that nerve pain was notoriously difficult to treat and I would need to keep an open mind and try a range of options. 

For most people, shingles is a nasty but short-term affliction lasting seven to 10 days. It is very painful for most, but the worst of it is normally confined to a few days. The pain is caused by damage to nerve endings, so it’s particularly intense (a friend’s mother who has birthed four babies said labour pain was nothing compared to shingles pain). The rash and blisters usually heal quickly and there is no lasting impact. 

That was far from the case for me. As the weeks passed, and the solid red rash occupying half my trunk crusted and scabbed over, the pain remained the same: barely relenting. I couldn’t stop sobbing. I wanted so badly for the pain medication to work. I wanted my life back.

My partner, family and friends were getting worried. My employer was supportive of my taking medical leave, but I chose to work throughout because I needed the distraction. I worked from home mostly, but dragged myself into the office as much as I could to avoid turning into a complete recluse. A colleague visiting from Napier asked me how I was doing and I broke down and actually cried on his shoulder, being careful not to leave tears and snot on his T-shirt. I’m not typically a crier, but by that stage I was in so much pain I could barely think straight.

March and April are a bit of a blur. I padded around the house in an old vintage T-shirt that doubled as a nightie. Underwear was out of the question unless I had to go out. Waistbands, already tricky thanks to perimenopause, were banned.

Another layer to all of this was the side effects of the medication. I’ve barely taken paracetamol in my life and suddenly I was throwing pills down the hatch and rubbing ointments all over my messy midsection. There is a range of treatments available for shingles, but nothing gave me any meaningful relief. In the end, pregabalin was my drug of choice and I remained on a low dose until early June out of fear that it might actually be doing something, and if I stopped taking it, the pain would return and form an unholy alliance with the itch.

Catching up with a friend recently, I explained what I’d been through and what I was now dealing with. She listened carefully and, after a pause, suggested that I “try to manage it but not attempt to control it”. My friend has been managing a chronic condition most of her life, so I gratefully took her advice. I’m also very aware of how hard it’s been for her to get others to understand the seriousness of her illness (looking at her, it’s not apparent that anything is wrong). She’s spent a lot of time doing her own research and advocating for herself.

Driving home, I wished I had been there for my friend more over the years. Having just been through the most challenging health scare of my life to date, I now understood how isolating illness and chronic pain can be. 

This experience has left me with a mix of feelings. I’m grateful that I can work from home, that I have a supportive employer, and that I live in a country where I can walk into any pharmacy and receive funded medications. I’m sad that there seems to be a lack of research into shingles and its aftermath. I’m angry that I am now saddled with this affliction. And I’m hopeful that the itch will subside in time.

I’ve been mulling over what I’ve learned, and what I wish I had done differently. I wish I had gone to my doctor at the first sign of deep, grasping abdominal pain I did not recognise. I wish I had been told firmly by the diagnosing doctor to drop everything, go straight to the pharmacy, and get those antivirals into my body. I wish I’d been told what was likely to happen with shingles (textbook case) and what might happen (severe case). And finally, I wish I had been told how pain relief actually works, that there are different types of pain, and that managing nerve pain is difficult and I should expect most of it to be ineffective or only mildly effective.

In 1970, writer Mary Jean Irion wrote, “Normal day, let me be aware of the treasure you are. Let me learn from you, love you, savor you, bless you before you depart. Let me not pass you by in quest of some rare and perfect tomorrow. Let me hold you while I may, for it will not always be so. One day I shall dig my nails into the earth or bury my face in the pillow, or stretch myself taut, or raise my hands to the sky, and want more than all the world your return.”

And here I am, still dealing with my own version of The Itch and wondering if Saturday, 17 February 2024 was my last normal day.