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.
Sat, Jun 17 2006
My Internet problems continue. The next stage was testing the wireless from my room
to the computer across the house - and there is still no connection (no sign of
it in fact), even with the digital 'phone turned off. The wireless still works from
the router to my PC so there is no reason to think that there is a hardware problem.
It seems something is interfering with the signal. Maybe there are wires around
the doorways causing problems, or maybe the other wireless signal that seems to
be around (much stronger than ours!) is the reason. Whatever the cause, it makes
what should be a fun pastime very frustrating.
Lots of meetings this week, and when the nurse came to do my port flush I ran to
meet her without any breathlessness (not overenthusiasm so much as embarrassment
- I had been driving off when she turned up). A small bit of stitch still remained
after the last port op. and it had been catching on shirts and other clothing causing
untouchable irritation, so that was also cut off. The interesting news from the
appointment is that my blood results - for which my consultant was waiting on regarding
Itraconazole - finally came through yesterday (after about five weeks); the results
were just acceptable, but the reason for the delay is that bloods seem all to be
going to another hospital. Very strange.
I have been taking lots of no.15, the anti-inflammatory, cooling tincture. It has
worked, but cannot cope with the worst of the heat. Even with lots of water and
salt tablets I still end up with thick, dry sputum. It is irritating, causes sometimes
violent coughs and does not really want to come up. The only thing to do sadly is
to take everything possible and get through it. Similarly the hay fever largely
just has to be endured.
I have also seen the Osteopath a couple more times (actually two different practitioners).
It seems that after my surgery my upper spine, and thus my upper ribs, neck and
shoulders, was left very tight. So while I did not appear to have much of the usual
defensiveness (hunching of the shoulders, upper arm leaning forward), the area needed
a lot of work (and still needs more since both upper an lower ribs had suffered
again with all the coughing in the heat).
Lots of things have changed in the last couple of weeks but nothing unusual healthwise!
Thu, Jun 01 2006
From work again
I still have no Itraconazole (it has been about four weeks now). To an extent I
have given up chasing it for the moment since I realised that there might be another
reason for my lungs: dust. Over the last five months of tiredness and frustration,
I have slowly but inevitably let my paperwork build up. I finally have tidied away
my cards (one of my hobbies) into boxes, but every time I look at the paperwork
with an eye to clearing it, my body shudders.
I was recently reminded how much my life depends on adrenaline. It would not be
much of a stretch to believe that I need to tap adrenaline to get me out of bed
in the morning and that it does not leave my system until I am asleep. And this
is causing me the problems now: to clear my paperwork requires a surge of adrenalin,
and curiously it doesn’t really want to flow for tedious annoying tasks like that.
The other problem at the moment is that since I spent a lot of energy (and adrenalin!)
writing this big letter for the church, I have not been able to get to sleep at
a decent time. It takes adrenalin to eat in the evenings, and then adrenalin to
get to bed… so by the time I am there I am pretty wound up. So even if I get to
bed at a reasonable time, I get easily distracted and still stay up late. Even going
to the gym – normally a good way to get nicely tired – did not solve anything. Nor
have the days when I have slept in the afternoon/evening.
However, the aim is to slowly (or quickly) dredge up enough energy to tidy my room
and then dust it. The process has been helped by the removal of my friend’s stuff
back to Morocco. This stuff has been replaced by an incredibly heavy an awkward
chest of drawers from the next house (there went more energy as I took it up and
down stairs), but it did enable us to remove a lot of dust, and the chest will even
hold random things until my sister can get a house to put it in.
On a random note, I was given a “stress ball” this week which is too solid to ease
any stress at all. However, it does seem to be reasonably good at increasing the
strength of my grip. It keeps me busy at work while I try and sort out my email