Natalie is married to Michael who has CF. Together they have an 11 year old daughter Zoe. Natalie shares her perspective on being a partner of someone with CF, how she practices self-care and accessing support.
Please share some of your background about meeting Michael and how CF was first brought up
I first met Michael in 1998 when I was working with his mum. CF was brought up the first time we went out together. We were having a meal and Michael pulled out his Creon and took it before eating. I did ask him what they were for and he said “I have Cystic Fibrosis and I have to take them before I eat”. It was never an issue for me. At first, I didn’t understand what it was, but through Michael and google I soon learnt a little about it. As the years went by, I learnt more and understood more. Even now there are still things I learn.
What are some of the main ways you support Michael with his CF?
I support Michael anyway I can. I used to go to all clinic appointments with him but now days with school pickups etc to consider I can’t always be there, but still have a good relationship with his care team. I pick up meds when needed, but we are lucky as quite often it ties in with clinic. But always happy to do when needed.
What have been some of the most difficult CF-related experiences/times your family has been through?
The most difficult times we find as a family is when Michael is in hospital. Trying to juggle seeing him and his doctors with school drops etc can be challenging. And Zoe missing Dad too. The most recent time in hospital in 2017 was probably the hardest time for us. Michael had haemoptysis. He was very sick, and it was a little hard trying to explain to Zoe that dad was sick at the moment but going to be ok. We got through it as a family and with help of grandparents and friends for school drop offs etc.
Many people talk about positive things learnt through having someone in the family with CF. Are you able to share some positive experiences?
There are many positives for me. Michael’s positivity is one of them. To be able to go through what he did when he was young and still be able to have the outlook he does everyday, even in times of sickness.
Strength to be able to deal with setbacks and keep on going, not that there is any now.
And not sure if it’s CF related but Michael always puts Zoe and myself first. Back when he was sick, and I had been at the hospital for two days off and on, he told me to go play netball and have a break from the hospital just to give ME some time out. Reluctantly I did and he called me a while after playing and said to come when I can as he was going in for an operation….but that’s another story 🙂
You have a beautiful 11-year-old daughter. Can you share a bit about dealing with how CF affects male fertility, your IVF journey and advice for others who might be going through this?
The main affect from CF for male infertility is the vas deferens not being developed. Most men with CF produce sperm, they just need help getting it to the egg. Thus where IVF comes in. Our journey through IVF was hard but so worth it. We did 11 cycles of IVF all together with our little miracle arriving in the world in October 2008. My advice is find a clinic/doctor you are comfortable with. And as stressful as it is, try to relax a little. It isn’t easy between blood tests and injections and other medication, but it is worth it in the end.
For us we actually only told a couple of people what we were going through as we didn’t want everyone to keep asking about it. We told our employers and we were very lucky they were very understanding as I had to go for blood tests each day and have time off for egg collections and then embryo transfer.
How do you take time to care for yourself?
I have my hobbies, so I get my “timeout”. I play netball and go to the gym too. I also sew and do papercrafts. I think as an adult and parent, regardless of if you have a spouse or child with CF, you need to take care of yourself too.
As the saying goes “you can’t pour from an empty pot”.
What support services do you access and do these help you feel supported?
We haven’t used a huge amount of the services available, mainly the fitness subsidy to get Mike fit and healthy again. Also, the study support so he could become a personal trainer to help other CF people.
Knowing that everyone is just a phone call away if needed is always the best and we have formed beautiful friendships with everyone at CFWA. I think that is just as important. Through COVID we required help getting sanitiser and other things. CFWA to the rescue as we were quarantined.