A "fan" site created by People With CF. Highly recommended.
Official site for this excellent British charity. Includes extremely well populated forums - highly recommended.
What is Cystic Fibrosis?
A pictorial guide to the key parts of CF and to living with it.
Cystic Fibrosis Medicine
A somewhat thin internation site for CF patients and specialists. Other blogs
Breath of Life
Another CF blog, rather more complete than mine!
> Cystic Fibrosis and Me: A Personal Journey
(Clockwatcher sadly passed away 2006; the site seemed to follow him)
I seem to have lost my links to other CF blogs. If you want yours added, give me an email.
Tue, Apr 18 2006
Finally, an update!
I know I do have a few readers out there, so if you have been waiting for an update,
my apologies. I have felt under the weather, it seems, for the last six months.
After my huge bout of bugs in February (along with, it seems, my ABPA playing up)
I had no energy to write, and was finding it hard to read. Luckily I sent some emails
to work about what was happening and I started a series of postdated entries with
one of those.
My current state is nervous anticipation - perhaps why I feel able to write a bit
more - but also, now both my diabetes and ABPA are better controlled, I feel a small
rise in my bounce factor. But just a small one.
The last three weeks
It has been two and a half weeks since I came back from Holland. The trip itself
mostly went smoothly, although there were a couple of amusing blood sugar incidents:
I forgot my blood sugar kit at the concert, preferred to go high rather than low
and ended up being very high as I sang very loudly throughout the coach journey
back to the hotel; and on the final evening I went the opposite way and wandered
around the bowling alley shaking with low sugars as I tried to record the evening
on a camcorder (with only a single packet of fruit pastilles to keep me safe!).
I started dropping my steroids half way through the trip (going to alternate days)
and dropped down to 15 a couple of days later. It -was- a bit rushed, but I was
desperate to get my blood sugars under control. Although I got through it fine,
the erratic and varied meals in Holland combined with the steroids had left them
fluctuating wildly and it took until the Monday (having returned Thursday) to get
Before I went, I had asked my acupuncturist if he could help and he gave me something
which should theoretically prevent the reaction (therefore mimicking the steroids).
I started taking some of that (no.15) and the current anti-heat tincture (no.14),
the latter because I am still having hypers which cause heat. It is definitely having
an effect because when I forgot/was too tired to take it for a few days I started
getting short of breath and producing dark sputum again. Solving the problem has
also meant that I no longer need to see the cranial osteopath every week as I did
for a short spell.
My health had an effect on my social activities - I almost missed the choir trip
(and sang quite badly due to tiredness and chocolate); I missed a rugby international,
although we gave the ticket to my godson who was ecstatic; I have missed most gaming
nights; and a few projects slipped behind. The biggest worry has been, and still
is to an extent, my Masters degree, which I have barely touched for a year. Luckily,
the staff at Aberystwyth are very understanding and have allowed me to postdate
a claim for an extra six months of time out. Still, getting back down to academic
work is tough.