They say you can tell a CF child by their personality…
Strong, daring, cheeky and mischievous. With many having the ‘hyena laugh’ or a slightly hoarse sound in their voice or having hunched over shoulders from the copious amounts of coughing. For someone who knows about Cystic Fibrosis, it doesn’t take long before you can identify from these small traits that its Cystic Fibrosis. When a Cystic Fibrosis baby is born, a CF Warrior is born. Little do people understand that the strength this child has. Let me shed some light on this for you… Strength comes from the daily treatment that is required to help maintain the CF Lungs. The mornings spent on a nebuliser, having inhaled treatment to help break down the mucus, the physiotherapy treatment, which consists of being “hit” on the back to move the mucous of the lungs causing coughing fits, which allows the thick, sticky phlegm to be brought up and spat out.
The strength comes from this being the way life is. There is no option to decline the treatment, it must be done. Whether they like it or not. The pancreatic enzymes, some taking up to 40 a day, to help digest the food, because when these tablets aren’t taken, food can not properly be digested due to pancreaticinsufficiency. This is caused by the thick mucus which clogs the pancreasand makes it difficult for digestive enzymes to be released. If no enzymes are taken or the incorrect dosage is consumed, in the short term, the food will not be digested. This will cause gas, pain, and unpleasant smells, along with constipation or frequent stools.
Throughout the day, a chronic cough. A gentle reminder from the body reminding you that CF is still very much a part of you. Or the night time cough, just as you fall asleep, your lungs decide they want to attack you and cause you a ridiculous coughing fit, causing the lungs to feel like someone has stepped on them with a steel cap boot. Oh and the uncontrollable coughing in public, often bringing unwanted attention as people glare as they walk past, afraid they may catch something. (NEWS ALERT: CF IS NOT CONTAGIOUS) The strength a CF Warrior has is often underestimated, CF means there is no choice to not be compliant, the demands of CF are hard work, but we have no choice. Have you ever heard of the word resilience? Well this is something CF people are born with. Forever overcoming difficult times and situations that are often unimaginable to others. Whether that be the daily CF treatment requirements to maintain a “normal” life, to the days where it is simply a “CF day; where there is no energy or zest for life as the body needs a day to recharge.
The mental battle - between you and …you… For me and those in my age group, it is the heartache of watching our friends deteriorate and sadly lose their battle to CF. Something we have no choice in, heartache that is un-imaginable and confronting for us on a personal level, losing someone who suffers from something you also have. It is scary. We have no choice but to be resilient. We cannot change what is not in our control. We need to find ways to deal with it.
Being hospitalised for lengthy periods to time is not enjoyable; imagine being isolated from family and friends for 2 weeks whilst overcoming lung infections, being prodded and poked by numerous medical staff from having blood tests every few days, to the intravenous antibiotics. The trauma felt from having numerous cannula’s inserted as often the veins collapse due to being used too much, this pain is unbearable.
Speaking from experience, this is extremely traumatic. Strength is just one word to describe the characteristics of a CF Warrior. Daring. This is simple. You say don’t jump; CF people say how high? Forever pushing the limits, daring to be brave, daring to do the unexpected. Challenging CF, it becomes almost a personal battle, mentally having CF means we are going to challenge it. Dare the disease by setting no boundaries. Dare to be different. I dare you CF… Go on…TRY ME! Cheeky and Mischievous come hand in hand. From a young age, CF Warriors are blissfully unaware of any other sort of life. We know no different. Personally, I think it’s a blessing in disguise. To get through the pain, we need humour. Through the mischief and running amok, it is the cheeky and witty personalities of a CF person that are infectious to others. When you have no option but must deal with the pain that this invisible illness brings at times, I find the best coping mechanism is to humour ourselves and others. After all, laughter is the best medicine.
Never underestimate the strength of a CF Warrior.
We are fearless. We are strong. We are determined. We are courageous.