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CYSTIC FIBROSIS
Welcome to Jamie and Meegan England's CF Pages
Many useful Links at foot of page.
It is
morning...
It must be, I can hear the
noisy din as my little sister Meegan protests wildly about having
to have her physio. Mum and Dad said I used to be like that, I
don’t think so, I have more wily ways of avoiding the so
called ‘friendly Pats’. I snuggle up, its warm in bed,
I sometimes wonder if I would ever get out of bed if left to my
own devices. I hear Dad come into the room, I hear his voice, I
ignore him, I cannot hear him, my ears don’t work in the
morning. I feel a tickle, even my tickling bones are not awake
yet, I am pushed and pulled and gently brought into reality......
“I need to wee....” Well its the first delaying tactic
I can think of, I walk into the bathroom and pretend I think it
is the toilet, OK I smirk and grin and give the game away every
morning but what the hey..Its tradition. I am ushered into the
toilet where I do my utmost to provide the longest and most time
consuming wee on record. I wash my hands and then hop on
Dad’s back for the ride to Physio. By now Meegan has
finished her Physio and is now heading for her pre breakfast
nebuliser and meds. Meegan is a strange girl..She eats cheese and
meat and all weird stuff for breakfast, still I suppose with CF
its not a bad habit. Me...I have Weetabix but I have a long ways
to go yet before I can have my breakfast.
We talk, sometimes read stories and sometimes watch TV but
whatever we do it’s still the same old routine....
“Have you finished this side yet Dad? Turn, turn and turn
again, I know just what this patting is for, I know just how it
keeps me well, I have known for a long time, but still I cannot
wait for it to be over, at least until the next lot later today.
After a half hour of Physio I sit up and Dad and me always have a
cuddle, he says thank you for being good, and, if I really did
used to be as noisy as Meegan, who can blame him for counting his
blessings.
We go downstairs. I sit in the chair nearest the door, that way I
can watch TV and put the noisy nebuliser in the hall, the tube
winding its way like a transparent worm to my puffer. Dad tinkles
around the kitchen as I flick around the TV the Cartoon channel
is my first choice but lately, and only sometimes I watch a
program on fishing or space or whatever takes my fancy. Mum and
Dad say its because I am growing up, I wonder is that good or
bad? Dad had mixed the Colymycin and I now spend the next 20
minutes puffing on this pipe, I know the antibiotics are very
good for me, I know the strong ones in this will cling to my
lungs and fight off any nasty bugs that might come my way during
the day. I know I need it, but it still gets boring.
After numerous cries to Mum or Dad, Is it finished yet...Is it
finished? I eventually get the reply I seek so desperately.
Dad has now done his blood test and taken his insulin, now I sit
at my little table and Dad brings a tray laden with morning
goodies. Firstly I have 4 mls of Cisapride, this stops me
throwing up after food, which is quite annoying I am told, Hee
Hee!. I then take 5 or 10 mls of Flucloxacillin depending on
whether I have any snuffles or not, I used to call it
‘suesox’ when I was little. Then I take my second
antibiotic, but only if I have a cold or little cough, since
having the Colomycin inhaler I have needed this second oral one
less often. Then I take my 5 mls of Ketovite this gives me a lot
of the vitamins that my CF stops me absorbing properly. Then I
take 1ml of Vitamin E, so little but apparently it does so much.
Then I have a puff of Flixonase up each nostril, this is to fight
my Polyps in my nose. After that lot I then get to have four
puffs of pulmicort in my nebuhaler by this time I am in a hurry
and I puff wildly, dad makes me breath deeply, this makes me
cough but I suppose a man has to do what a man has to do. The
tray is taken away and I am now heading for my next
goal...Brekkie. My weetbix is liberally covered with PolyCal
which gives me some extra energy, a spoon or two of sugar and
some hot milk, I always have a warm fortisip supplement
milk..Yummy!
The breakfast arrives, but first I have to take my enzymes, I
have ten capsules sprinkled onto apple, it’s quite nice
really though a little gritty if it gets in my teeth, mum or dad
crush up a ketovite tablet in the apple for extra goodness, I
wish they wouldn’t.
Peace and quiet reigns. I eat my breakfast and know that it will
be soon time for school. Dad has his breakfast and sometimes if
we have been delayed his hands start shaking, that’s because
his insulin has not had its breakfast quickly enough, if he falls
over I get him some sugar, but that has only happened once.
Sometimes the Simpson’s are on and Dad and me watch it while
we are eating. Meanwhile Meegan is going through many of the same
things I have described already. When we are both finished our
med, physio and food Mum and Dad take it in turns having their
Bath, Meegan and I begin to create havoc and by the time they are
dressed and ready to start the next phase the house is a chaotic
mess. I then get 5mls of Gaviscon, again to stop me vomiting, I
really wonder sometimes what this pre occupation with stopping me
vomiting is all about. Then that is it, at least until my next
session tonight.
Mum puts my lunch into a bag for school, everything is labelled
with how many capsules just in case I only eat some of it, My
Teachers and My Dinner Ladies help me take my capsules at school
they are very good. They even give me Cisapride before I eat and
Gaviscon afterwards, it really is strange how adults have this
anti-vomit fetish.
Today is a normal school day, no clinics, Doctors, X-rays where
they take pictures of my bones, no scans where they see my liver,
No Physios making me cough onto ear cleaning things, no puffing
into computers to create charts and no measuring or weighing of
my body, in fact it just a normal day.
Comments
are most welcome to
WEBMASTER
Links
Welcome
CF Conference - Montreal October 1998 Click Here
Visit
A
Nice Site for CF Kids in New Zealand 
Click here to visit UK CF Trust
Click here to visit the CYSTIC-L homepage
Click here for Rich Lukas
Comprehensive list of CF websites
Click here for
CF Association of WA
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International CF address Book
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Copyright 1999
