You would expect living with someone with cystic fibrosis (CF) would be difficult, exhausting and constantly upsetting, but that’s really not the case; well not in my experience anyway.
I met James 17 years ago when I was 17. We had our first date at the cinema, he then whisked me off for a romantic meal for two at… MacDonalds (he’s still just as romantic now!). It was here that I first found out about CF; I asked him what his tablets were for. James was really open when talking about his condition and at this time I wasn’t worried about it, to me he seemed like a ‘normal’ 19-year-old boy.
Finding out more
As we became more serious and we met each other’s friends and families, it was then that the opinions of others bothered me: “He won’t live for long”, “All those tablets can’t be good for him”, “Your children will also be ill” were just some of the comments that we heard. This is when I started googling regularly and I would make myself so upset and scared that he was going to die, even though he had not shown any signs of illness. He barely even coughed, but what google said must be right! I even thought about leaving him because the thought of seeing him suffer was too much for me to deal with.
I’m not really sure what changed to make me feel more relaxed about his condition, maybe it was the fact that I was more mature and understood the condition more or maybe I just decided to live our lives to the full whatever happens and that we certainly have done so far.
We have travelled all over the world, we’ve partied hard with all our friends, bought our first home and got married, all while sticking to the strict regime of keeping fit, taking medication, regular hospital check-ups and the occasional bout of IV antibiotics to keep James as fit as possible.
Facing challenges head on
It hasn’t all been plain sailing, though; one of our toughest times was going through IVF treatment. This certainly tested our relationship, the hormones, the waiting and not to mention the ridiculous amount of money spent was agonising but ultimately resulted in our two amazing little boys.
There have been other times like when James broke his leg and was on his IV’s for two weeks. I would get up at 5.30am to draw his IV’s and administer them. I would help him dress and drive him to work, all while taking care of our eldest child who was one at the time, and also going to work myself.
I’ll never forget the time, not long after we had been together, James’ needle came out of his portacath, his IV’s were due and I was the only person around to put it back in. I had a huge fear of needles and would pass out at the sight of blood, so this for me was my worst nightmare! I did it but was traumatised for days, I could hear the pop as the needle went into his skin. Needless to say my fear soon lessened the more hospital check-ups I went on with him.
We have been lucky that James has only had a couple of hospital stays in our 17 years together, one for cellulitis in his arm and another for a blockage in his bowel. One of these times I was heavily pregnant with our second child and the other time he was in a hospital an hour away from home and I would travel with our one year old in the snow and juggle school runs all while trying to keep everything normal at home for our children. It’s times like these when I am reminded that James does have an illness and I do worry about our lives if he wasn’t here. More so now for the children not having a daddy. It’s soon forgotten and I’m back to nagging him for not picking up his dirty pants and leaving the toilet seat up - something that always happens living with three boys!
Our boys are aged six and three and have very little understanding of cystic fibrosis. They know that daddy takes tablets, but it hasn’t ever impacted their lives; he is a fantastic daddy.
Looking to the future
James is such a positive and strong-willed person and he never feels sorry for himself. Anything he has ever gone through in his life he has done so with humour. His parents are the reason for his amazing positivity. He was never made to feel different and was always taught to be proud of who he was and never to hide away. His mum (a paediatric nurse) was so strict with his care as a child and this is the main reason he is so healthy today. At 37 next month, he has already lived seven years longer than what google says!
Myself, our families, our boys and most of all James will make sure that we keep fighting CF and moving the age statistic a lot higher. James is an inspiration and we are so lucky to have him in our lives. I can’t wait for us to grow old together.
For a different perspective, take a look at our Valentine's Day blog by Gearoid, whose wife has cystic fibrosis. Our Valentine's Day blogs were inspired by Alice Peterson's new book 'A Song for Tomorrow', which explores the life and love of Alice Martineau, who had cystic fibrosis.