I grew up in England, married and had two daughters. After visiting my sister here, we talked about moving to New Zealand. Arriving late in 2001 not long after the 9/11 event. Our daughters were aged six and three.
We settled into life here on the North Shore. I stayed at home with my girls until they were settled in school and it became apparent that I needed to go back to work. My background was in Recruitment and in February 2003 I began working at AUT, recruiting staff and running their temp pool. I’ve always enjoyed working with people, so the role was ideal for me.
Life was humming along nicely until 2004 when my marriage broke up. I was lucky to be able to carry on living in the same house and the girls were able to stay at the same school. I met and married Mark who the girls love and who has become my rock. My girls did well at school, went on to University, graduated and are getting on with their lives now, one in England and one in Wellington.
In July 2024 whilst I was having a meeting at AUT, I felt excessive saliva building up in my mouth, which caused me to throw up after the meeting. It was a Friday and I had a very rough weekend, feeling awful and continually throwing up. On Monday I went to hospital and was told I had Gastritis, given pills, told things would settle down and was discharged. I was no better after the course of pills so went to my doctor who sent me back to hospital. I was in hospital for 10 days and told I had a hernia. After 5 days at home, I felt much worse, so back to hospital for the third time. This time many tests were carried out. I kept telling the doctors that my feet were freezing but no one seemed to think it was very important until a doctor from the neurology department heard me as he was passing. He stopped, prodded my feet and said I needed an MRI. It was midweek and the MRI machine wasn’t available until the Friday. So they took me down for my MRI in the middle of the afternoon on Friday and I assumed I wouldn’t get the results until after the weekend.
About half an hour after I was back on the ward, one of the doctors came to see me and asked “Is your husband here” I said “He will be here shortly”. He wanted to wait until Mark arrived which was unnerving! Mark arrived about 15minutes later and he told us I had NMO, or Neuromyelitis Optica, an autoimmune disease that primarily affects the central nervous system, particularly the eyes and spinal cord. He said that it was treatable but there was no cure. When I left hospital, no one told us what the next step should be – they said that I should be fine to go back to my job, because it was sedentary, and that I should come right in about three months.
People commented that I was handling it really well – looking back I think I was handling it that way because I really didn’t understand and wasn’t given any further information.
After I left hospital, I started having spasms and hot pokers! We called them pain bombs! And over about 3 weeks they became more and more painful, longer lasting and closer and closer together with each spasm. We finally went back to hospital, where I was admitted, given medication and told “it’s actually your nerves healing” I think I was in hospital about a week – but once the pain relief was sorted, I was discharged and things gradually started to improve.
My brother in England had been diagnosed with MS at 25, in about 1985. He didn’t tell us until he was in his 40s and I remember when he first told us he had said “don’t keep asking me how I am” and “don’t tell me about every new drug or treatment you hear about, I have a neurologist who I trust” By the time I was diagnosed he was 64 and managing his MS really well.
So, I rang Dunc about 20 minutes after I’d been diagnosed! He told me not to do anything until he got back to me. He came back to me, later that evening and said “here’s the non – hysterical version of NMO from the NHS website, do not google” He rang me every other day in those early days whilst I digested what was happening. I read the information and realised that some symptoms were similar to those of MS. I went online and contacted MS Auckland as I didn’t know where else to go. The team were wonderful and I felt welcomed with open arms.
I already had a blog, Flip Flops and Tea Pots, which is useful to update family and friends on how I’m doing – and it also helps my wellbeing by giving me somewhere to express how I’m feeling. I joined one of the MS café groups. They meet once a month and I clear my calendar to make sure I can attend. I love meeting with the other members and sharing laughter, friendship and support. I started doing rehab work at the Gym and working with a trainer to regain my balance and my mobility. And until recently I was still in my fulltime role at AUT.
In 2025 my daughter in England was due to come home on holiday at the same time as my other daughter was due to come up from Wellington. I was so excited to have both of my girls home together and we had lots of plans. Then I caught a cold. Within the week, I couldn’t walk up the stairs, so I was admitted to hospital again, this time for 4 weeks, missing my daughters’ visits! They came to see me, but it wasn’t quite the trip we had anticipated. There were card games and dice games. And there was another MRI which revealed inflammation and a new lesion, subsequently there was a bout of strep – none of which were helpful. I have realised that for me any infection I catch drives my symptoms.
I went back to work fulltime in August, but it soon became apparent that I was pushing myself too hard. I was so fatigued, falling asleep at my desk and I had constant brain fog, losing words, unable to multitask – all those things that are usually easy.
One of the things we all need to do is listen to our body and I wasn’t doing that. Mark was wonderful being there for me and supporting me all the way. And he helped me see that, when it was offered, early retirement was an opportunity that I really needed to take. So in December 2025, I took it.
Since finishing work, my walking has improved, the brain fog has lifted and my sleep quantity and quality is much better. Although I was going to the Gym whilst I was working, I wasn’t able to do my other physio exercises consistently – and that has really improved now. First thing every morning, I’m either at the Gym, or on my deck doing my exercises and my balancing. And it’s been really helpful to be able to work properly and consistently on my fitness. I’m grateful to my trainer for always motivating me and bossing me around when I slack off! I still attend the monthly café group and I’ve joined another one! Both of which save my sanity.
The one on the left contains things I must do today, the one in the middle contains things I’d like to do longer term and the one on the right is the “let’s not look in there today bucket “
I loved my job and I think for the long term I made the right decision to leave, although I do miss it. I think after taking better care of me for the next six months I would like to work again, shorter hours and less stress. I hope to celebrate my 60th birthday a little later and I’m saving my sparkly skirt for the occasion.
And I’m ignoring the bucket on the right for as long as possible.
Geno reflects on his MS Diagnosis, and how sometimes going down the rabbit hole you can find some gems on the way.
