Picks-at-Flies's Cystic Fibrosis Blog

I suffer from the genetic condition Cystic Fibrosis. I generally keep myself comparatively well with Western antibiotics (and steroids, and vitamins and...), Osteopathy (generally to tackle tightness on the lungs) and Acupuncture. Unfortunately I tend to lose track of how I was behaving this time last year so I have started this blog to help me keep track of things. You are also welcome to look. For more on Cystic Fibrosis see the CF Trust website http://www.cftrust.org.uk.

Articles: Chinese medicine, CF and Me :=: Another year on :=: Top ten ways of staying healthy
Reference: Description of herbs :=: List of herbs :=: About this blog

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Links

> pwcf.com
A "fan" site created by People With CF. Highly recommended.

> CF Trust
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.

Visit the CF Trust

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Wed, Jul 05 2006
Back in business

I am typing away at 1.30 in the morning. Actually I am trying to pluck up the inspiration to write some more essay but find instead that I am concentrating miserable on other rubbish. However, things are looking up in general terms. I have Internet access at last, although we still have to move the modem/router from room to room because the signal does not carry. I managed to solve a horrible problem with MS Office eventually without having to reinstall Windows (hint: think twice before following "solutions" on the Microsoft site). And I managed to fix Blog (the program I write this in) so it will actually upload to the website again.

Finally, I have actually got back to my essay. I had one false start - truly false since I misread the question - but I have found that once or twice a week in the cool hours of the night I can actually get a bit of concentration in. And it is spreading. With a lot of fighting myself (I hate writing factual stuff!), I hope that maybe, just maybe, I will actually be able to finish my two outstanding modules and then really I only have my dissertation. Well, I can dream.

In the mean time I have been learning how to make online databases. Still cannot get them to edit online, but I am mostly there. Whee! And I seem to have had the energy to do lots of other projects.

Healthwise... well, it has been hot. All CF patients seem to be suffering form the usual symptoms - thick sputum, sweating salt. The solution is similar for me as for everyone else - take lots of salt tablets, water and shade. The cooling herbs also have an added benefit. Considering my lack of exercise (I stopped evening gym sessions to focus on my Masters... well, that was the idea), I have a good appetite. I still have no Itraconazole, but I have stopped asking for it. I just gave up, frankly. I seem to have reasonable energy, although I am certain that my lung function is generally low. But then everything I tried for that did not seem to help, including the exercise.

I have also been to see the Osteopath a lot recently. Maybe one of the reasons I suddenly seem to have so much energy is the amount of stretching and relaxing he has done around my upper back and diaphragm. I certainly seemed to help clear the lungs.


by Picks-at-Flies  Comments

Posted at:Thu, Aug 10 2006 11 AM