My journey to wellness

Broadcaster and producer Andrea Hayes shares her experience of living with chronic pain

In December 2013 I took a phone call that would change my life for ever. Having spent more than half of my life looking for an explanation for the constant pain I have had since my teens, it suddenly seemed as if I might have an answer.

It was a Monday morning and I was sitting at my desk in TV3 feeling the pressure. I was in the middle of shooting a one-hour festive TV special called Coming Home for Christmas, and the show had to be filmed, edited and delivered on time to air on Christmas Eve.

To add to this, I had volunteered to cover a few afternoon shifts on a charity radio station, Christmas FM. Like everyone else, I had my festive shopping to do, Christmas parties to attend and all the preparation for Santa in our house. It was all go and I was wrapped up in it all.

I was checking the diary on my phone when a number flashed up. I recognised it instantly: St Vincent’s Hospital. When I answered, to my surprise I heard my doctor’s voice.

Unwell

Towards the end of the year I had been feeling unwell. I had suffered from ‘back issues’ for many years and the pain in my neck, shoulders and down my right arm was now constant and debilitating, so my doctor had scheduled an MRI scan to investigate further.

I had been attending Dr Paul Murphy for many years and had never received a call from him, so perhaps I should have listened a bit more carefully when he started to speak and asked a few more questions, but I just said: “Yes, yes, em… yes, OK, great, thank you, see you on Friday … bye.”

I did manage to scrawl down the words “Chiari malformation, 1-2-3”, and from what I remember, Dr Murphy said something about some degeneration showing up on the most recent MRI scan and then mentioned Chiari malformation 1.

It was a rare condition, he said, and I had the mildest type, type 1, which meant that my brain was pressing downwards. Although it can be asymptomatic, he wanted to get it checked out.

I hung up, almost not reacting. A colleague and friend was at my desk when I got the call and asked me if I wanted to talk about it over coffee. I said yes, and as I sipped my coffee he said, “Now don’t go googling it, that’s the worst thing you can do!” I knew he was right, so I didn’t at the time. I put it to the back of my mind.

I did, however, do something totally unplanned later that day. Without really thinking about it, I approached my line manager with a view to getting some time off in the New Year. Knowing I would have this time off seemed to push me through that busy time. My pain level was very high, but knowing that some downtime was ahead was a real motivator.

So in January 2014 I took leave from TV3 to follow my own pain management programme. I knew my lifestyle needed some adjustment, but I wasn’t quite prepared for the journey and massive changes that lay ahead. The process hasn’t been easy and has involved lots of highs and some very dark lows, but one thing has anchored me along the way – the confidence to be an empowered patient. I have taken control of my own life, my own health.

Making the journey from patient to person takes time; in my case, a lot more time than I had anticipated, and it is a journey I continue daily. It isn’t all calm waters; in fact isolation, fear, anger and just dealing with the pain can overwhelm a person who is living with persistent pain, and it can be very difficult to overcome those negative emotions, particularly at the beginning.

Breakthrough

The most significant breakthrough I made in my journey was that I realised the most important person in my team of medical professionals was me.

I trusted that I had the answers within me to feel well again and I embarked on a voyage of self-discovery.

I was determined to find the key to unlock the cycle of pain I was living in. I believe you too can do this. You hold the key to unlocking the pain and opening the door to the rest of your life.

Here are some pointers to help you start the process:

Accept the experience of chronic pain and find a good team of people to support you.
Educate yourself about your condition.
Seek support.
Keep up daily activity.
Don’t allow the fear of additional pain to stop you from doing activities.
Managing your pain is all about pacing and spacing activities.
Understand yourself – pain increases in times of stress.
Help others to understand you.
Remember to be good to yourself.
Develop a strategy for coping.