Living with Cystic Fibrosis
I get a lot of emails from people around the world, asking me how, or does Cystic Fibrosis affects my life, and I can honestly say it does. It’s like one major factor in my life and no hard how I try to get rid of it, it will always be there. Day and night, 7 days a week, every minute and second of the day.
Mornings: I normally get up about 6.30 – 7.30am, the first thing I do is sit on the toilet, sometimes, I have terrible diahorra first thing in the morning. Depends whether I have taken my creon (digestive tablets) the night before. I sometimes stop taking them daily as I get constipated, then go back on them once relieved. I use my nebuliser (Ventolin) as I cant stand using the puffers. I get my exercise by walking when shopping, or going up and down the stairs as we live in a double storey house. I have breakfast, a bowl of fruitloops and a cup of tea, with 2 crean tablets. (1 Creon = 10grams fat). Acimax Tablets for reflux, Augmentin Duo for my chest infection with seems to be continuous at the moment.
Lunchtime: I normally have a $4 meal from MacDonald’s, with an apple pie. It used be a happy cheeseburger meal, as I couldn’t eat the whole thing, my stomach is small, and a happy meal was huge. Then I forced myself to eat more even though I couldn’t fit anything else in. I weighed 50 kilos, eventually I upgraded to a small fillet o fish meal, and then finally the $4 meal. All up that should be about 4 Creon tablets. I now weight 56 kilos. I am hoping to reach my goal of 65 kilos. Thankyou Ronald Macdonald!
After lunch with Jerry Springer, I use the nebuliser and then try and do my emails and catch up on other Internet projects.
Snacks: For all snacks whether it’s biscuits, a chocolate bar, chips or a sandwich, its 1 Creon tablet. 2 if a drink is required.
Dinner: Whatever my mother cooks, I eat and then work out roughly how many grams of fat she used. Normally I take 3 Creon tablets. Overall in a day/night I take up to 15 Creon tablets.
I use my nebuliser in a double dose as once I am in bed I am up 3 times coughing my guts up. All I can say is I am happy that I have an electic blanket on my bed, after being frosty in the middle of the night from coughing in the bathroom you need it.
Problems that arise
Being in line at the post office for example, the line has about 7 people it in, you’re the 8th, and you pray that you don’t have a coughing attack. Once you cough that’s it, I feel embarrassed. A few people turn there’s heads and look at you with disgust, or make comments such as “you sound like I did last week, must be the flu”.
having children, as most mothers would know doesn’t do any wonders to your pelvic muscles when you cough or sneeze. And you cant cross your legs in public either. Especially when you non-stop coughing in line for 10 mins.
some days after I eat I drop my bowels. I suffer from terrible stomach cramps. These cramps then go onto hot and cold flushes, and then nausea until I relieve my bowels. For a normal person to experience the pain that a CF person would go thru, try this: if you drop your bowels daily, don’t drop your bowels for 2 days. If you drop your bowels every 2-3 days, don’t drop them for a week, then you will roughly know and experience the pain that we suffer.
some days I cant be bothered to go out, especially on a cold day. I went to a wedding a few months ago, and it was that cold inside and outside, that my bones froze, and I shook, and later on I developed pleurisy. Some days when I go to the park with the kids, my ears get cold and sore, and a headache develops, and coughing sets in. Depending on how many times I am up during the night, and exercise I get though out the day, I sometimes fall asleep in the afternoons. I don’t mean to, but I do.
my sex drive isn’t really a drive with CF. Before I had kids and CF, I loved sex. Now its like yeh…” I don’t really think its important in a relationship, it does play some but not a lot. And to tell the truth there’s more in life to see and do, than sex most of the time. I cough and slatter during sex, if I get overly excited or overheated.
always get one person that coughs during the cinemas? Well it’s probably me.....
Mood swings I sometimes get, or some days when you’re grumpy with the kids, even though u didn’t mean to yell at them. It also has to do with tiredness, I try and get about 8 hrs, but being up 3-4 times per night coughing, then try to fall back to sleep, takes a lot out of you. Coughing about three quarters of the day also makes you tired, as your using your muscles every time you cough. And it can cause a headache/migraine.
I tried to get private health insurance for me or for my kids, and life insurance, only to be told by a bank manager, “off the record” that I will not be entitled at all. She said he husband was sick since birth, as he couldn’t get any kind of insurance. Same will be applied for me. Because I am a threat, with CF, I could drop dead the next day.
Jobs interviews are difficult is your sitting there answering questions and suddenly you cough. I don’t tell people that I have CF, unless it’s brought up in conversation, or they ask 21 questions why I am coughing and the flu. But for all job interviews, I will not jeopardise my chances of getting another job because of CF.
you have to study each day in a specific shop to avoid long queues. When’s the less crowded, and roughly what time. I do this in all the main shops I go to, in case I have a coughing fit.
Email: kham2601@bigpond.net.au
