Our Members - Their Stories

MDANZ members share their personal stories of living with a Muscular Dystrophy condition. 

Yes, you can: Conquering CMD

13 January 2022
Anonymous

I was born two months premature and it was touch and go for a long time as I was incubated with breathing and numerous other difficulties. As a toddler I wasn't able to walk unaided until I was four years old, involving many falls. (Nothing too serious though and I guess it wasn’t as far to fall then as it is now.)

I was first diagnosed at the age of four with Congenital Fibretype Muscular Dysproportion. This is still (again) being further investigated. I was lucky enough to grow up in the Maniototo and attend the same
school all the way through my school years, so I didn’t need to deal with too much change. After I finished school I went on to study Business Studies at Otago Polytechnic. This brought a new set of challenges but I was ready for them and had great supportive friends around me always willing to lend a hand when needed.

Walking too far is difficult and I was lucky I had friends with transport who were only too happy to play taxi.  My first two jobs were part time. Fatigue has always been a huge factor to overcome and I always thought working full time would be too big a challenge. However, in my mid 20s a job opportunity came up for full time work on a six- month temp contract in transport/logistics. I gave it a go, thinking it would be only short term. But 20 years later… (although it had been on and off as I left a couple of times to try other things in life, but the company kept taking me back when I needed work again). I finally finished with the company last year as unfortunately, due to Covid, I was made redundant. It was a difficult time, being made redundant and not knowing if employers would take a chance on a disabled woman in her late 40s, not to mention the loss of the income I'd been used to.

I came close to giving up and moving back to the Maniototo, but I wasn't ready for that reality yet. I got stuck into to applying for every office job I could and luckily admin jobs were plentiful in Dunedin, even in Covid times.  One thing I did learn, which was very helpful, was that unlike previously I was narrowing my options to places that had parking and easy access. By that I mean parking outside the office, as any further is too far for me. However, I was able to get funding for transport to and from work so I can get door-to-door service - an absolute godsend, that opened my options up to being able to work in the CBD, which I had never thought would be possible.

So, after 15 or so interviews I finally nailed a job in logistics again, this time with Silver Fern Farms, initially on an eight-month contract, but I was hoping that once I got my foot in the door, it would lead to a permanent position. Then we went into lockdown again. This time, however, I was working for an essential service and fully able to work from home, and I am very grateful for that! Then in the middle of lockdown I secured a permanent job in logistics in another part of the business. It is very different from last year, and I’m very excited to be secure and happy in my employment again! It's fantastic to be working for a company that’s not afraid to have a diverse workforce from all walks of life and actually practice that.

Don't get me wrong, this full time thing has its moments and I get totally exhausted. A lot of people commended me for not giving up but, honestly, I didn't like the alternative. I need to be working to have a sense of purpose. I now work one day a week from home and the rest of the week in the office. Everyone is able to do that as the company has an amazing flexi-work policy.  

If there is anyone out there in the same kind of position, please don't give up. Reach out to resources for help, sometimes the simplest of things we are unaware of can be an absolute game changer.

A big thanks to the wonderful Leisa at Workbridge here in Dunedin, for her amazing support and the knowledge she shared while I was on my job quest, and to Jackie at MDANZ who is always lending support.

 Always believe in your abilities and don't let anyone tell you that you 'can't' do something. You CAN!