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26 | InTouch SUMMER 2024 so I couldn’t ride her even if I was able to. I’ve decided we’ll just get old and limpy out in the paddock together. I can still wheel out to her paddock and brush her and give her treats, along with her friend Flicka the mini horse. It was a real sticking point for me to think about selling my beautiful saddle, it felt like I was giving in, that I was defeated. I had to change my mindset, so I sweetened the deal for myself by deciding to swap my saddle out for a sewing machine. I have gone back to doing sewing, embroidery, crochet and other crafts. It is crucial to find something that brings you joy. I enjoy all the things I can do. What does your everyday life look like now? My daily routine is pretty much the same each day. I like it like that. I get out of bed, shower, dress, make coffee and check my emails – and perhaps get stuck in Pinterest for a while looking for creative ideas. Then I will prep dinner for the evening’s meal. Once I’m all caught up, I venture down to my sewing room and make some creations. Currently I’m working on Christmas gifts and dining table accessories. Everyone is getting a hand made item this year – like it or not! Around 2 in the afternoon I usually run out of puff, so I have a small lunch, and then lay on my bed to get some time on my BiPap machine so I can recharge for later in the day. I use that time constructively by doing crochet or embroidery and watching videos on my laptop. Around 5pm I get up and get dinner rounded off and spend some time with my family. Once I’ve eaten, my breathing gets very affected, so I go to bed early and listen to podcasts. Fortnightly I attend my local hospital to get an infusion of the enzyme I’m lacking. I joke that it’s really my only social outing every 2 weeks. Not really joking though, it’s great. I’m so lucky to have treatment, and my nurses are awesome! What resources, if any, have you accessed from MDANZ? We’re fortunate to be able to access resources from MDANZ. Our fieldworkers are a wealth of knowledge about what sort of things are available locally and nationally. I’ve used the Bradley Jenkin Memorial fund to get new batteries for my mobility scooter. Those things are expensive! Our local branch organises get togethers, activities, and puts on a Christmas lunch in town. We attended last year, and it was so nice to meet others going through similar issues. Everyone had a smile on their face, and it was a lovely occasion. Do you have any tips when dealing with the Health system and other Health professionals in New Zealand? Dealing with the health system in New Zealand is a huge challenge. The Ministry of Health tends to kick rare disorders down the road because of their rarity. They’ve been able to do this because we don’t have a loud voice like, for example, people with cancer. You say “cancer” and people instantly know what that is, and it garners instant care and support from the public as well. There are several doctors who aren’t scared of standing up to the Ministry of Health FOCUSING ON WHAT I CAN ACHIEVE Above: Allyson with her horse Rain, and photobomber, Reggie the cat! I have gone back to doing sewing, embroidery, crochet and other crafts. It is crucial to find something that brings you joy. I enjoy all the things I can do.