I’m tired of speaking stronger than I actually feel

I forgot why people are so interested in my story until I was reminded a few weeks back. How many have gone through CF, Crohns, Diabetes, Transplant, Seizures, Swine Flu and a brain Haemorrhage in the space of 29 years. I can only think of one. I try to live a normal life and inspire others to make the most of there time here but as shown in Paris recently, it can be cut short. We all know of someone who died very young to enjoy what life has to offer. Here’s a fact, we will all die someday.

I personally feel the strongest are given the hardest path to live through and enjoy it. Talking to someone with a chronic illness is tough and I understand that but this is 8 things not to say to a me.

1. I have a cousins friend’s neighbour who’s daughter died of CF at 12….
We live as positive people. Saying something that doesn’t help with our confidence and shows us that you know very little about the disease. We have come a long way with medication and treatment. We are fighting now for a cure so keep your bad news to yourself and tell me the good stories about PWCF that give us hope. That way we know you are looking out for us.

2. It’s like asthma, You will grow out of it, yes?
No, a chronic illness is for life, there is no cure and although asthma has some of the symptoms it doesn’t effect your stomach or pancreas. Some get worse with age and although there is a lot more out there than years ago we all come to a time where a transplant is needed. Someday that will be different and transplants will be a thing of the past. Nobody with Asthma needs transplants.

3. The new drug they brought out Kalydeco must be great for you?
Yes Kalydeco is a great new drug and is probably the biggest breakthrough in CF but only can be given to people with a certain Gene Mutation. The most common in Ireland is Delta F508 and we are waiting for a drug like that of Kalydeco to help us prolong life. It still isn’t a cure.

4. Jesus you are on a awful lot of medication…
Yes I am, I take over 60 tablets a day, 4 nebulisers, calorie shakes and cardiovascular exercise. Do I need to be reminded? Do I ask you what you had for breakfast?
CF is a life and I am used of it so no need to state the obvious.

5. You have a chronic disease, But you look fine….
Yes we do look fine but insides are effected like no other. My organs are covered in thick Sputum. I cannot produce enough insulin to break down sugar, not enough enzymes to break down food, that’s why I have a box of creon and epipen I’m conscious of in my pocket and my Kidneys are on constant pressure due to all the medication. Talking to you is an effort because I’m short of breath constantly. I’m afraid I’ll get in a state of coughing and I have no energy to walk 100 meters along with the gurgling of blood as my lungs are scared from coughing. So yes I look great and I will tell you I am but inside I’m dieing and thats the reality. Harsh may it be but sometimes the truth is.

6. Oh that’s a bad cough. I HAD THE SAME LAST WEEK.
This is a real annoying one. Our coughs are 24/7 365 days a year. Although winter is tougher, we don’t need to be reminded of our deep productive horrific cough. We live in a society in Ireland where we constantly try to make out we are worse than another or have a better story. I couldn’t count how many times a customer or random person both sex’s would cough without any consideration in the surroundings. I have listened to strangers tell me how sick they are without knowing of my CF because I look healthy and I let them have there moaning moment. Sometimes they enjoy it more than smiling.

7. Jesus your awful skinny, do you eat.
This is my pet fucking Hate and the most annoying thing anyone can say to me. Do I ever tell you that your a fat fuck and need to pull away from the table? I eat over 6000 calories a day, try to keep my sugars at a certain level as I’m a diabetic and take digestive enzymes as my pancreas doesn’t produce enzymes. I even had a feeding tube in my stomach that has left a constant scar. Ten years ago my cough brought up 600 calories per day and I needed to exercise to clear it. Whats your problem being fat? As a good friend of mine once said ” there is an obese child in you, wanting to break out” I join gyms to help make my lungs stronger.As I look at people in the gym wondering why a skinny lad would go to the gym, I ask myself if any of them would survive CF, diabetes, Crohns disease, Transplant, Brain Seizures, Swine Flu, Brain Hemorrhage,a broken Skull in 3 places, over 20 operations and in total 22 days in a coma so yes I eat but please refer to number 5.

8. So with having a transplant your cured???
Again shows your lack of knowledge. CF is a chronic illness and although a transplant prolongs life and gives a better quality, it doesn’t replace our genes. The new lungs are always at risk of being infected with a CF mutation or rejection. We can’t replace organs in our stomach and with every tablet I swallow my Kidneys are under more pressure. So there might come a time where I will need another transplant be it Kidneys or Lungs but I have no fear of any of this. I survived the hardest CF has to offer.

I’m really sorry if you have taken offence to any of the above, it might seem negative but over 29 years you learn alot about People, I keep a certain circle as they are my life and they know who they are and I honestly don’t mind talking about illness as it’s my life and I like to educate people about CF, it’s our way of getting funding for that cure. If we could cure Polio and TB there is no reason why we can’t cure CF. The downfall is that there is so little PWCF In the world we are not seen as important as things like Cancer or MS.

Ask me any question you like but think about your insecurities and ask If you would like the question or does it hurt your feelings.
Remember;
I will not die of CF but I will die with CF.