Question from Researcher

Happy Saturday!!! I was recently contacted by a researcher who is gathering info for her PhD. She asked some questions that I've decided to turn over to the community. I appreciate you guys taking the time to think about the following question and give it your most thoughtful response. I think it is always wise for us to help out anybody doing any type of research on Cystic Fibrosis-whether the physical, mental or spiritual affects of the disease. Just in case your curious, I'm not getting paid to participate and either are you :)

Question 1. In your blog you often mention your body, or parts of your body. You talk about running to keep your body healthy, you talk about feeling pain, fatigue, feeling out of breath and you talk about pushing through those feelings to go running or walking to stay healthy. Your most recent posts have been about getting your body healthy, about how the different drugs are making your body feel, concerns about how they might affect your body and so on.

I am interested in finding out how people with CF experience their bodies. Not symptoms of CF but the thoughts, feelings, and ideas about your body that having CF and also dealing with CF in everyday life brings up for you.

For example, I have some problems in my neck and shoulders and it has really changed the way I see my body, and not only that, but my outlook on life. I thought it was strong and would last forever and all i had to do was feed it and sleep. Now I know that you can't rely on anything to stay the same or be what you expected. I know your body is something you have to care for. Sometimes I feel angry, sad or frightened when I am in pain and can't sleep or do my work. I feel frustrated and disappointed when it interfere with my plans. Sometimes I feel excited because I think my body is teaching me important lessons about life - how you can't put too much store in plans for the future for example. So these are some of the thoughts, feelings and ideas that my body brings up for me.

Bio: I am an Australian health researcher and have been doing research with people with CF since 2006. I do social research, not the treatments or laboratory research, which aims to understand about people's lives, their experiences and perspectives. My current project is my PhD in which I am trying to understand the experience of being an adult with CF. The idea is to gather, in a 'scientific' kind of way the sort of information that can give doctors, nurses, policy-makers and so on an insight into the more personal aspects of managing and living with CF in adulthood as opposed to the medical bits. I hope this sort of research will eventually lead to more appropriate treatments, better relations with medical professionals, better health policy and community support. I have contacted Ronnie to help me thrash out some of the ideas that are coming up in my research

So, what do you guys think? Do you have any answers to "how you experience your body" as a result of CF?