[paul-met-debbie]

Well, it would be impossible to exist without attachments. Because that would be an attachment itself (“now I am going to live without attachments” – good luck with that).
So, I would have to answer to your question: it is kinda like living. Just be. Don’t think your life, live it. No conceptualising. Naturally, there will be no specific attachments (as a by product, not as a goal). Life will be the only “attachment”. And in comparison with that, nothing would hold your attention for long anyway.

[paul-met-debbie]

Who makes up questions like these? They are not true. Don’t make up identities like this. How to answer such a question?

You can’t come to terms with it, because it doesnot exist.
Everyone has a life-long illness which is called living. It has a bad perspective, uncurable. Your body will die from it some day. But that’s no problem, it’s supposed to happen, so nothing to come to terms with. So with cf or without, same thing.

You can’t learn to accept your “illness” because it is only a story in your mind. There is no “reality” in that at all. Take a close look! Really!
You just have to accept life as it is. That is: the reality. That what happens. It does not come as a life-long illness. Years don’t come 365 days at once, days don’t come 24 hours at once. Every hour comes 1 minute after another, every moment comes as a separate event. No moment is unsurvivable. If you look at cf as a life-long illness that you “have”, there is no grace. Grace is only there where there is truth. Truth is, you never have anything life-long. You only experience anything moment by moment. Grace is there. In no moment of your life you will ever have a life-long illness. If you think you do, your mind is creating a drama. Don’t go there.

[paul-met-debbie]

Well, the best recipe would be not to take yourself so seriously.
Try to remove as much identity of yourself (and of your so called health condition) as possible. With the removal of that, also your problems disappear.
Look for the being that is present under the person. Discover that it has no problems at all, no wounds to heal. Miracle-cure. Of course, circumstances will still be there. But if no person is there to identify, to own them, no suffering will occur. We all need to vanish (as seperate persons with identities). Just be. Stop doing – and stop even doing that. It’s like falling asleep – how do you “do” that? And when you apply the same at clear daylight, you wake up, healed and complete.

[paul-met-debbie]

Well, same as with the unpredictability of life in general. Is there anything predictable? Tell me about it, I am curious. Don’t panic, nothing is under control.
We can’t even predict something simple like the weather more than 3 days with reasonable accuracy. So, as long as you don’t expect or attach to predictability, you are in the clear. Everything changes, all the time.

[paul-met-debbie]

Yes, I have a bottle at hand and in the car. And in the guest bathroom there is another one. Especially when I have to visit the doctor/hospital it’s important (bad bugs there). But also in shops etc, doorknobs, pay-machines, pincode readers, elevator knobs, you name it. Public toilets not to mention.
And I wash my hands frequently too.
Sure it helps, that’s a fact. Most germs come via hand-on-hand contact and via food (but you can cook that, not your hands).
I also ask the guests in our house on entering to either wash hands or use the alcohol handdispenser. No one ever objected.
By the way, this is not specifically a good idea for CF. It’s good for everyone.

[paul-met-debbie]

Yes I was aware of these.

Well, just be as clean as you can and for the rest: trust your immunesystem. I don’t eat meat (bad bacteria, and traces of antibiotic can make me less sensitive for antibiotic treatment). I wash my hands regularly (often wear gloves, it’s becoming fashionable again) and stay away from large groups of people, certainly in wintertime when there is flu and comon cold around. If I have to be in such a group, I make sure there is good ventilation.

I stay away from hospitals also (I demand treatment at home, there is more possible than you think) and I do my tests at home as much as possible too (lung function, fitness test, weight, dietary needs). I let someone else bring in the fluids for the lab (sputum, urine, etc), and phone my doctor to discuss the results. Do my bloodtest at the local physicians labaratory if possible. I consider if I really need this yearly x-ray again (what can they really see on it, if I don’t have a special situation at hand, then it’s just for the archive, I have never seen them do anything because of the result of the protocol x-ray). I don’t do lungfunction test in the hospital because I think they are not cleaning the machines well enough and often enough (mostly they clean up after the cf-patient has used the machine at the end of the day. Makes you think, doesn’t it?.) I think hospitals are the worst place with the most dangerous bacteria, and doctors, patients and nurses spread them around all day like TNT express. I don’t ever make the mistake of feeling safe in a hospital, only want to be there as short as possible as little as possible. But don’t follow my example, make up your own mind.

And for the rest: don’t panic, nothing is under control.

[paul-met-debbie]

When I was young, I thought this was a problem. Not many people knew about cf, so that made it harder I thought.
So I just didn’t tell. I also felt it was part of my privacy. So, if people asked about my coughing, I simply said I had a cold. Or that I had chronic bronchitis. Or even astma. Astonishing how easy peoples curiosity is satisfied. If they have a “heading” under which to place your problem, that usually is sufficient for most of them. (my wife and family-in-law knew the larger story, but actually, it comes down to the same, it’s all a story and not more). I worked for 15 years and never felt the need to tell any of my colleagues – it was fine that way.

Now (I am 55) I sometimes tell, sometimes not, depending on the need of the person talking to me. Sometimes they seem to need a concept to be satisfied so I give them the word cf. Cf is more wellknown now. But actually, that does not make a lot of difference. Telling or not telling now I feel doesn’t really matter.

Cf is just a label. Ask yourself: do you really “have” cf? Who has cf? You, your body, your selfimage, your ego? Are you attached to it? Could you do without it? When do “you” have cf? All day? Every hour, minute, second? Or only when you think of the word or concept? Or read about it? Or talk to your physician. What about when you sleep? Do you have cf then? Or when you are really cought up in something creative? How real is it? And when you have a coughing fit, do you feel you have cf then, or do you just have a coughing fit?Does it really exist or you do believe it into existence out of habit, because you believe some one who told you when you were young, and it got its own life and now you are perpetuating this believe?
If you take a close look, other than the day when you genetically test for it and you get the result of your genome, “cf” is not a real thing. It is a useless and (i think) damaging story that needlessly takes away some of your innate happiness. Just get rid of it. Clean your thoughts. Tidy up.

Furthermore, cf is so different for every patient, it hardly has any meaning to tell anyone “I have cf”. Even now, when more people know of the word and the existence of the disease, what does it really mean if they nod and say: Aha, so that is what you have? Do you have any idea what is going on in their heads at that time? What do they know, or understand? And does it really matter to you? Is there really anything to know?

It is my true experience that I don’t have cf. Doctors might tell mw, but it is not my life-experience. I have some health-related issues (who does not, nothing special), that make a more complex health-manual but I am used to that, so for me it not more complex. So I deal with any of these issues if and when they arise. It does not make me feel that I have any kind of special disease. I need water and food to stay alive, and I need to keep moving, and sleep, these take a lot of time too, but they are all not diseases either are they? And I need to eat my medication as well and do some more excercises to keep my lungs clean. So, does that make up a disease? What’s the difference? There is not.

It does not make me special or other, it does not make me feel different, I does not effect the way I experience life. It only has some practical implications that I deal with, that’s all. What good does it do to call it a disease, to tell anyone about it in that way, to give it an identity and than run the risk of that identity taking you (and others that know you) over? I see it happen in so many patients and families. It is not for me. Once you realise the mechanism of this identification, you can stop it. I never bought it.

So, to sum up, being open or closed about it, is not the issue. The real issue is: how much do you believe that you have cf? If you don’t believe it, you don’t give life to it and it stays the little thing it really is: just another of life’s happenings that you have no control over what so ever, nor should you think you have or should you try to have. It is all in the game.