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Living with Cystic Fibrosis

This is a story I wrote many years ago when I lived in Cairns (2003). If people are interested in hearing more about living with Cystic Fibrosis at 40 please let me know and I will write more: requestcf@mylousyjob.com

(some CF website links <here>)

Reality!

For those who don't know, I have Cystic Fibrosis. Sometimes I write little articles for the Canberra CF Association's newsletter. These articles flaunt my condition and make it appear that I am not sick at all. This article was to straighten out the depressed PWCF (persons with CF) who think I am 100% healthy.

Reality Check

Sometimes life is tough and you feel like quitting. You feel like you just can't do it any more, and need to accept it. But do we need to accept it? I don't think so! Push the envelope and persevere! This article paints a personal picture of one of those experiences that can make us think we are one notch further down the ladder than we really are.

My typical day goes something like this. I get on the nebuliser just before going to bed at midnight and think I cleared my lungs real good. I still wake up coughing at least three times during the night, and wake up at 7am coughing. Often I have a bit of a sore throat and worry about another impending flu! The cup next to my bed is full of phlegm. I can't really sleep in much as I need to grab the nebuliser and clean those lungs again. If I’m really tired I’ll sleep in for a few hours after nebulising in the morning. But more often than not I’ve worked up such a sweat nebulising for 20 minutes and coughing my guts out that it is too hard to go back to sleep, especially when there is a wet spot of sweaty sheets where I was sitting.

Someone comes in and asks me to go for a bike ride or a walk in the hills, and I really feel like saying ‘NO, GIVE ME A BREAK!’ But I know I should go and I try to be enthusiastic. 'Gimme 30 minutes'... and I get my gear together. With the brain still deprived of oxygen it is really hard to think. I stumble around, knock things over, forget things, can't find my sunnies, my wallet.... but I’m out there in 30 minutes, coffee still in hand and barely dry from the shower that woke me up a little.

I get out of the car and start coughing as soon as I walk. I have trouble breathing just walking, but I just sit down, cough and spit, spit and splutter, and get up again. This is how I go for 20 minutes, and then I slowly stop coughing. Coughing comes easy, and as it is good for us to cleanse the lungs, I don't mind it. Once the gunk is out I can breathe again! I walk up and down the hills, or ride on my mountain bike, and it feels sooo good! The trees, the birds, the fresh air, and I can breath normally!

When I get home I have a shower and feel a million dollars! Then I do what I do best; in my case that is sit down in front of the computer and do my computer work.... fiddling with websites, helping people, answering queries for the accommodation place we manage.... Wife Katherine does all the 'dirty' work outside (from gardening to cleaning up after guests) and I do the internet side of our job. We are the resident managers here. Meant to be a part time job for one, but we are both busy doing our bits. Sometimes I drive out to small businesses to help fix a computer problem, or go do town chores, like go to Bunning's, the Warehouse, the Post Office and bank go past the tourist agencies to remind them we exist and have vacancies...

A day might pass without real exercise and my lungs are feeling it! I can swear that sore spot near my shoulder is in my lung, or that 'stitch' I feel somewhere deep down in my chest is a pending infection that will kill me one day.... I take my 'Fluimicil' from overseas; something I use sparingly as we cannot get it here. You are supposed to take it three times a day! It is anti-inflammatory and a mucolytic. I think it really helps me. I swallow my daily vitamins and sometimes have a Berocca on top. I take my brain-pills (the herbal stuff to improve short term memory), and my Glucosamine-Chondroitin pill that stops me from having a stiff back and sore knees.... and decide I need to go for a run again real soon.
I get out the house and cycle to a nearby spot where I like to run. I cough gunk all over the street as I cycle the 500 meters to where I prefer to start running....
I get off the bike and try to breathe again. Even walking leaves me short of breath. I kneel down, cough real hard,... look at the view, and break into a jog.
I jog for a hundred meters and cough some more. Every time I see someone with a dog I stop and pet the dog, talk to the person for a bit, and recover. I am not even sweaty as my lungs don't let me run hard enough to break into a sweat.
After petting the dog I bravely run off again till I am out of earshot and stop to cough some more. I see another person in the distance and bravely run past them without coughing.... After half an hour my lungs are clean again, the world is a better place, I feel a million dollars once again! Come home pleased, big smile on my face, jump in the shower... Life is all good!

Now this doesn't sound so good, does it... But this is how it goes when a PWCF does exercise. It isn't easy, but other people see me looking healthy and going jogging, mountain biking, walking.... Those who join me know I cough a huge amount, but also see how good I feel at the end of it! The end result is what people like to see and so they encourage me to get out and go for it. Other people wander why I don't just get a normal job, and stop bludging. They just see me having a good time and think I should get a 9-5 job.

When I go snorkeling it is the same; I cough and splutter a lot. Recently I got a scare when I got into some rougher and colder seas than usual and just could not breath through the snorkel. There was not enough air coming through the little snorkel pipe it seemed for me to even float, let alone swim! Katherine told me it was the cold water. I didn't believe her, I thought it was the end of my snorkeling career... A second trip out to the reef a week later was no different. I could not snorkel! Instead, I went for a little SCUBA dive. The compressed air is much easier to breathe with as it is pushed into your lungs, and doesn't need to be sucked through a snorkeling ‘straw’! I don't recommend SCUBA for PWCF for the obvious reasons, but it gave me back my confidence. A month later I went snorkeling on a quiet beach and had no problems when the water was warmer again.

The moral of the story is that you have the choice how you look at your life. You can put it all in a really nice optimistic picture (I run regularly, jump on the mountain bike, go swimming,... look healthy), or you can look at it from the difficult point of view (challenge after challenge, the poor sick child). I choose to look at it through rose coloured lenses, as I am used to coughing in any case! Been doing it for 38 years now (correction, 40 now!)!

Walter----

Note on CF

Cystic Fibrosis is a genetic conditions that gives me lousy lungs amongst other things. I take medication with every bite I eat, and need to cough my lungs clean twice a day using a nebuliser. Deskjobs are out of the question for me, I need to be doing daily exercise to keep my lungs clean. The exercise makes me fit and appearently strong and healthy - apart from the obvious cough/spit!

The biggest danger with Cystic Fibrosis is that the continual pneumonia gets out of hand. The reason the lung infections cannot be stopped is because for some reason CF lungs are susceptible to bacteria that other people's lungs will not host (I understand this is because of thicker phlegm and a particularly hight salt level of my 'CF' body). The various bacteria that CF lungs are prone to catching are typically anti-biotic resistant. The overuse of antibiotics eventually causes the infection not to respond to treatment and we die... Some patients get lung transplants, often accompanied with other organs (like the heart/liver) which are all strained because of the huge strain of pumping low oxygenated blood around the body through congested lungs. Hence many CF patients die of congestive heart failure too...

 

Cystic Fibrosis WEBSITE LINKS

To get checked for the Cystic Fibrosis gene print this pdf file for information:
http://www.cfsa.org.au/upl/genetictestcarriers-pamphlet.pdf

Here is the new National (Australia!) website:
http://www.cysticfibrosis.org.au/

 

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