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7 October is Trigeminal Neuralgia (TN) Awareness  Day. Few people know anything about this condition. I didn’t until a friend was diagnosed with it almost 20 years ago. It sounded horrific.  Some years later, I developed shooting nerve pains in my face. Once again, I was lucky with my GP and my dentist. Both suspected it might be TN and I was saved the months or sometimes years of multiple tooth extractions and struggles to find a diagnosis that other sufferers have endured. It has since changed its form to what is called TN2, and now manifests with a constant burning. That change, too, was diagnosed quickly.

The condition can go into remission for days, weeks, months or years. But it is a progressive condition, and flares (or attacks) become more frequent, and for some, constant. They can be triggered by touch, wind on the face, weather, stress, brushing teeth, eating, or talking.

Even after diagnosis, TN patients struggle to find adequate pain relief, are accused of being drug seekers, or of exaggerating the pain by medical practitioners who know little about the condition. One woman reports of being told by a psychologist that she had “two arms and two legs” and should “get out and live.”

I have joined an online group of New Zealand sufferers. It is a supportive group, but shows the devastation this condition wreaks, as it is filled with people who have had to give up working, who live constantly with pain, who struggle to care for their children or elderly parents, or live anything close to a normal life, and who feel isolated and lonely. Yet they are able to joke online, climb ladders to paint their houses, travel overseas, and keep connections, even while their family and friends distance themselves, because they struggle to deal with someone who is constantly in pain.

So far I have been lucky, and I know it. So I’m torn between balancing the need to make more people aware of this condition and my desire not to make this a big deal – because for the moment, for me at least, it is manageable. So I’m talking about it today because there are many who are not as lucky as I am. And having TN makes me more aware of others in pain too. I now know how chronic pain or severe pain can be extremely debilitating, whatever the condition that causes it. It can be exhausting and restrictive and isolating. You never know when it will hit. And although someone might look fine, that doesn’t mean they are not screaming inside.

So I choose to use TN Awareness Day to implore you to reach out to anyone you know who suffers pain and let them know you care.

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I woke up on Saturday morning with a feeling of dread; an article I had been interviewed for was due out in the newspaper’s weekend magazine, complete with photographs and a video. My husband received a text early complimenting me on my comments, and so with that I knew I couldn’t go back to sleep for an extra hour, and went online to see the article.

The article is about the stigma society still places on women without children, and indicative of this is the fact that I was the only childless woman (rather than an academic or counsellor) who agreed not to be anonymous, and to be photographed for the article. My part of the article comes at the end, where I talk about how stressful holidays like Christmas (fortunately I didn’t get started on Mother’s Day) can be for women without children. There are so many clichés people roll out around Christmas/holidays that can be painful and dismissive, or nosy and judgemental, that I hope one or two who read the article might think before they speak around those who don’t and won’t have children.

In the interview, I stressed too that the isolation women without children might feel makes us much more aware of the many other people in society who might feel alone at this time of year, but it didn’t make the edit. So I want to mention it here, to remind us all to try and include, and be thoughtful around, those who might be feeling alone or left out or just plain sad this year. Being Merry isn’t compulsory, but being kind definitely should be.

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I have just cancelled my gym membership. I became a member at this chain of gyms in 2004, after my former personal trainer and physiotherapist, along with one of his colleagues (and one or two former clients as investors) set up their first gym. I’ve watched his company expand and achieve success, and have worked out at three of his gyms, each with a very different character and clientele, but each with high quality staff and facilities. Their own excellent physiotherapist clinics attached to the gym facilities have treated me with injured wrists, calves, knees, and a broken ankle. And every year I have enjoyed a free birthday massage, sometimes the only massages I get these days.

But I’m not driving into the city now on a daily basis, the only suburban gym in the group – the one with the amazing views and the wonderful drive around the bays to get there – is no longer working for me, given its distance from home, and the fact that other businesses are taking up all the available (and free) parking.

I need to change my workout routine, get into swimming, and have a cheaper gym membership nearby that I can visit regularly without taking up half of my day. But right now I’m mourning the loss of my lovely gym, the friendly people staff and the other members I have chatted to over the years, the views across Evans Bay, the scenic drive I took to get there, and the cafes where I would stop for a delicious coffee on the way home.

 

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