MY HEALTH EXPERIENCE: SEAMUS KELLY: The best way to deal with cystic fibrosis is to keep active
”I’M A FARMER by occupation. At least I pretend to be at times. I was diagnosed with cystic fibrosis when I was six years old and my brother Adrian was born. He was diagnosed with it then, and my younger sister Aileen also has the illness.
Up to that point, my parents were very confused as no one could give them an explanation as to why I was sick. I was only six years old, so I didn’t really know what was happening. School was fine for me; basically if I got a cold I’d be out for a while and would have to stay in bed.
I have to be very careful. I now need about two weeks’ treatment a year, when I get antibiotics. I refuse to have it done overnight in St Vincent’s Hospital in Dublin. They put a needle in my arm and I administer the drugs myself at home.
I’m lucky I get away with it once a year. I basically see it as recharging the batteries, and it gets me in gear for the hunting season, which I’m very involved with.
I wasn’t happy with the health service in Dublin. We’ve been promised new facilities for years, but all we have got is empty promises. Hopefully they will finish it.
Once, about eight years ago, I was shoved into isolation in the accident and emergency ward and there wasn’t even a window in this room. They very nearly forgot I existed; at least that’s how I felt. Only for I wasn’t able, I would have got up and walked out. I don’t blame the staff. It’s not their fault as they work under poor conditions.
Last time I was up there was in June or July and I had to stay for a few hours. I wouldn’t stay there overnight under any circumstances. I don’t feel safe there, as there are no proper facilities.
I accept I have cystic fibrosis. There is no point not, as I can’t get out of it. I take one day at a time and hope for the best, eventually they will find some better way of managing it. You have to drive on and keep a good attitude. The hounds and horses are my life and they are my health service. They keep me going.
The cold damp weather suits me better. The sunshine murders me with dust. Last summer was very warm and didn’t help me. I can’t handle hay or straw or anything to do with dust. I am fairly active, especially in August, when I am gone at 3.30am. I have my own hounds and horses and I could be out until 8pm in the evening.
I see other fellas with cystic fibrosis and they spend a lot of time on computer games sitting down or they drink or smoke. Some of them are not looking after themselves. I think country life is far better for you as you are out and about in the fresh air.
When I hunt with hounds on foot, I could cover 10-15 miles a day. That’s better than any physiotherapy you’d ever get. I might also be on horseback for a couple of hours a day and again that’s really good for your circulation.
In terms of medication, there are the tablets I’m meant to be on and there are the ones I actually take. I don’t bother with calcium, but I do take about 20 digestive tablets a day and I also use a nebuliser.
You’ll never see me on a sun holiday. Ireland is warm enough for me. I’m like a vampire sometimes in that I stay in during the day and work early mornings and at night.
Some of my family don’t like to talk about the illness publicly. But the way I see it, if it helps the cause in any way I will do it. If my talking out will result in the Government getting a boot up the arse, then it is worthwhile.
In terms of a transplant, I’ve always said I would not like it. I could not sit in a hospital for weeks on end. I’d prefer to be out on a horse no matter how sick I was.
I’m 32 years old now and I know the older you get the harder it gets. My lung function though has been better this year than the past four years, so I must be doing something right. I do notice things getting a little harder though. I seem to pick up more allergies and get tired easier. I suppose life catches up on you basically.
I know I’m still only 32 years old, but there are times I feel like I am 62. I’m slowing down a bit, but I don’t let it affect me. I try to stay as fit as I can from August until March and getting a few weeks of antibiotics helps recharge the batteries.
What advice would I give to others who were diagnosed with cystic fibrosis? I would say take one day at a time and enjoy life. The best way to deal with the illness is to try to keep active and do as much sport and outdoors activity as you can. Don’t let it get you down.
Seamus Kelly will be featured on
Ear to the Ground
on RTÉ One television on December 6th at 8.30pm.
In conversation with
Brian O'Connell
