Everyone’s story and experience of MS is different. We want to bring you real stories from real people living with MS in New Zealand. To read their stories in full click on the names below.
“The day I was diagnosed with MS my whole life as I knew it changed. I was a young, active mum with three children and spent most of my days busy running around with them. I never imagined that I would end up spending most of my days confined to a wheelchair.”
“It is for the families of MS that I fundraise. We are all affected in some way or another when a loved one is diagnosed, and we all need help. The funds that I raise for MS can help those working to improve the lives of those diagnosed with MS.”
“And having MS? Despite everything, I wouldn’t change it. Well, no more injections would be nice. I stopped surviving and started living. If it wasn’t for MS I would never have moved to the North Island, I wouldn’t have become second mother to my nieces, I likely wouldn’t have met my husband, bought my house, or met most of my friends. I’ve done so much living. MS is its own community and I’ve been lucky to meet friends from all over the world. I do have my challenges, but I’m grateful for the experiences I’ve had, and the people I’ve met. Without them, I wouldn’t be who I am today.”
“I am a very proud father of four amazing children and a grandad to two beautiful grandkids. They are my inspiration and I want them to see that anything in life is achievable, no matter what.
I now know my body’s limitations and my goal is to be able to accomplish one task each day, taking one day at a time. Yes, my life is more different now than I ever would have imagined, but, I wouldn’t change a thing. Some days are hard and long, but I think the secret is to just get on with it.”
“I arrived in Moscow for HSCT with a right leg that was constantly giving me grief: every few steps I’d feel a powerful electrical surge in my leg and then sometimes, as a result, my leg would give way completely. Add to this brain fog and fatigue caused by all the neural compensation that was happening. I departed Moscow with no fatigue or leg symptoms, and with a mind that is more sharp and clear than I can ever remember.”
“My 10-year-old son Connor gets to see me fight every day and never give up. More than anything, I want to show him that you can still take every opportunities for great adventures when life throws you lemons. It’s because of my passion for Connor, life, the outdoors and everything that is amazing and wonderful within it, that the bad days are so much more bearable.”
“I am not saying that MS is a blessing. However, since my diagnosis I’ve become a stronger and braver woman, and I am deeply proud of that. MS has changed my outlook on life in so many ways. It has made me realise that having a positive mindset is the most powerful quality you can possess. I intentionally reflect and focus on the amazing opportunities that have unfolded for me because of MS.”
“NZ needs to get real and provide a way forward in legalising and bringing in affordable medicinal cannabis. I know medicinal cannabis works for some because I have used it and still do use it, but it’s come at a cost. MS is not an easy condition to live with, but I have found ways of managing better. I meditate, I use medicinal cannabis when I can afford it, and I work hard to change my thinking from the negative to a more positive outlook.”
As part of MS Awareness Week, Sam looks back at the positive impact of being open and honest about her MS diagnosis and how it was ‘the best thing I ever did’. Thousands of listeners and people with MS contacted Sam ‘who are like me and still living a great normal happy life. It wasn’t some sort of death sentence, we were all okay, just had to get on with it’.
“When diagnosed, I was informed of a support group that I could attend at my local MS society, MS Taranaki. My initial thoughts on support groups were ‘people just sitting around feeling sorry for themselves,’ and this was something I didn’t want. Eventually, curiosity got the better of me and I reached out. Those original speculations crumbled after meeting Moria; the local MS Community Support. This brought a ray of sun through the rain cloud above my head that was a constant reminder and an ever-threatening possibility of a potential relapse. Not only did it give me a sense of security and community, but it opened a door of potentially being able to play a part in helping an amazing cause for people just like you, who may be hiding from their diagnosis, feeling alone or continuously trying to explain a misunderstood disease.”
“What do you do when someone blows your mind away by telling you that you have an incurable disease that will change your life forever? That you may be unable to walk in a year or hold an object in your hand; you may get incontinence; you may lose your sight and so on and so forth? All these horrible thoughts go through your head. And of course, the big one. Is it real? Why me? What can be done about it?.”
“The ability to continue to work and remain active in the community are some of the cornerstones of living a positive life with MS. My hope is that people with MS will be supported to do exactly that.”
“I remain positive I think it’s important to focus on the future always have a goal in mind and just chip away at it. I have not let the illness get the better of me and have spent the last few years improving my speech and balance. Just because I have MS it does not take away any of my comprehensive knowledge. You can still do the things you love you just have to sometimes do them differently.”
“It was mind over matter, when I had relapses I gave myself 3 days to be sad then on day 4 I gave myself a talking to and got back up used my crutches and got on with my day! Nothing is impossible. That is what I tell myself often Nothing is impossible.”
No matter how ‘grim’ it may sound, or appear, you simply can’t dwell on that or indulge that line of thinking. It can take you to a very dark place….I know, I’ve been there and I don’t intend to go back.
I recently became an Overcoming Multiple Sclerosis (OMS) ambassador for the Christchurch area and I would love to be able to spread the word about OMS to help others with MS. Here is my story.
They think that I started showing my first MS symptoms when I was 17 (I am 30 now). I used to horse ride competitively and at the end of a cross-country course the jumps would be a bit blurry. I knew that I had to jump between the red and white flags (which I could make out) and then I’d just aim for the middle. Luckily my horse and I trusted each other a lot.
I was diagnosed at 25 as I had been experiencing more MS symptoms. I was no longer horse-riding at that point but I’d run a few full marathons and I used to fall over on tree roots when I was doing trail runs sometimes.
I woke up needing to use the toilet. Rubbing my eyes and blinking furiously, I tried to focus my vision. “Damn, I need more sleep” I remember thinking as I crawled back into bed. The night before, we had celebrated my partner’s birthday and when I woke with my vision blurred and reaping the early signs of a hangover, I was sure I just needed more sleep. It wasn’t until we got up a few hours later and sat down for breakfast that I said to Anna “I think there’s something wrong. I can’t see.”
Andrew Hodson was diagnosed with Secondary Progressive MS (SPMS) in 2008.
“I probably had it for 20 years before that. A mixture of symptoms appeared then went away, including numb legs plus pins and needles. The initial diagnosis was very confronting, and I shed many tears.”
How has the work we have done made a positive impact on your life? Do you have any tips for living a happy, healthy life with MS?
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The stories, words and viewpoints found in My Story My Strength My MS are those of the Contributors. Content on this website neither indicates nor reflects the views of MSNZ. All information on this page follows the MSNZ Disclaimer Policy.