The Main Things Are......
January 2000 - thanks mum for taking this lovely picture of me in hospital - NOT!
Physiotherapy
I tend to still have a fair bit of morning mucus, so I do physio every morning for about an hour. I use a device called a flutter - which is clever little creation that causes vibrations throughout the lungs. I find it very non-invasive and effective and prefer it to the pep mask. When I have an infection, I increase my physio, using it 4 times a day.
Exercise
Exercise is a tricky one, because it's the best thing to do when you have an infection, but ABs and the infection can make you feel very tired. I used to be very strict about my exercise, thinking that I had to do something cardiovascular every day, but now I just go with how my body is feeling and be gentle if I'm not feeling well! Exercise is vital as it makes the lungs and heart work better so that your body will get more oxygen. By being fitter, not only will you feel good, but your body will cope better when you are sick. At the moment, since my energies have increased, I have started doing various exercises, such as aerobic classes, treadmill work (fast walk and gentle jog for about 40 minutes), more horse riding and hand weights daily. Weights are particularly good because it builds up the muscles surrounding the lungs. When I am not well, I tend to do gentle walks, but keep up with the hand weights.
Digestive Enzymes
I still use Pancrease, and my dosage has not increased for about 8 years. I have 5 capsules before meals and snacks. As my digestion has improved (perhaps from reiki and the oxygenator) if I have forgotten to take capsules, I don't usually suffer any consequences. (tummy pain or diarrhoea) Whereas in the past, my stomach quickly told me when I had been slack and forgotten my enzymes!! I am aware of stronger digestive enzymes but it has not been necessary to change.
Sleep
Sleep is so important because a lot of the body's healing processes happen while you are sleeping. When I was really unwell, I found I could sleep 12 hours in the night, do physio and exercise and then be ready for an afternoon nap - sometimes I would sleep for 4 to 5 hours. I remember back in Jan, Feb and March of last year (2000), most of my life was sleeping! When you have an infection, you are on antibiotics and your immune system is fighting an infection, both of which drain your energy and make you tired. No wonder you need so much sleep. Plus, if you are also exercising, when unwell this is also very tiring. At the best of times, CF people are tired - it's a never ending story!!!
Now, I only need about 10 hours during the night (and don't wake up feeling like I have had none, which was happening when I was unwell) and don't need any afternoon kips. During summer because of the heat I tend to sometimes need afternoon kips. I think the best thing is to not fight any tiredness and just go to bed. Your body is the best barometer and just listen to it.
Diet
Diet is a very important aspect of CF - we are encouraged to have a high fat diet, because when you get sick, lots of energy goes into healing and not much is left over for putting on weight! Also, because of the digestive aspect of CF, fat is not absorbed well into the body, which makes it hard to have a healthy weight. Because of this, a lot of CF people are quite thin. Having trouble putting on weight didn't seem to apply to me initially! In the past, I had to watch what I ate as putting on weight was no problem whatsoever, and when I got infections my weight was not affected at all. However when I got sick towards the end of last year, over time my weight dropped dramatically, and I could not put any on. It wasn't until I started taken the Colloidal Silver that the cycle seemed to change.
My diet is fairly varied, but my one main rule is NO DAIRY. I have found dairy to be mucus forming - and it's not just my finding, but also know a lot of singers who stay off it when performing, as they find dairy mucus forming. I have replaced milk and cheese with soy products such as soy milk and soy cheese. For some reason I also find wheat mucus forming, so I stay off most wheat foods. Instead of bread made with wheat I have rye bread and have also found alternatives for pasta, biscuits etc. I stay away from sugar and chocolates too. I have a wide variety of vegies and fruits, and like to stay on the lighter meats such as chicken, fish and lamb. Of course like anyone I have lapses and sometimes eat what I shouldn't. But generally I try to stick to this diet.
When I turned 18 I drank quite a bit of alcohol but as I got older found this also affected the phlegm factor, particularly red wine. When I became unwell I stopped drinking altogether, and have just started to have a little drink now and then. But mostly your liver is under a lot of strain as it is, and is a lot happier without alcohol! The choice is up to you!
I drink a lot of water, and also many herbal teas which have soothing, expectorant properties. Some of these include:
Plantain - is particularly beneficial for all disorders of the respiratory organs and helpful in ridding the lungs of phlegm.
Sage - has many useful properties, but in particular, its thujone content, which is strongly antiseptic, makes Sage very potent against staphylococcus infections, and is also a valuable herb in getting rid of phlegm in the respiratory system.
Mallow - can be mixed effectively with Plantain and Swedish Bitters to combat phlegm in the lungs, bronchitis, coughs, hoarseness, etc.
Liquorice - widely used for coughs and lung complaints with its soothing, expectorant and anti-spasmodic properties.
Echinacea - has antibacterial, digestive and antiviral properties
and
Thyme - helps to clear mucous congestion from the lungs and bronchial passages.
Just to name a few of them!!
Recently a lot of these herbs have now become available in tablet form or liquid form which makes them a lot more potent and effective. When I saw my Kiniesiologist recently, she put me onto some very yucky tasting herbs of Golden Seal and Thyme for my chest congestion, but they have helped a lot.
Vitamins
I have stints of taking different vitamins as the needs arise. At the moment I am having fairly high doses of Vitamin C, and have also started taking Cod Liver Oil (rich, natural sources of Vitamins A and D). It's better to have vitamins for a couple of months, then have a rest for a couple of months as I believe the effectiveness decreases if you are on them all the time.
Other supplements such Echinacea (herb) and Zinc (mineral) have been useful when I have had an infection, or for trying to ward off the winter colds. I also take Acidophillus in high doses to replace the "good" bacteria in the body.
I have also been taking homeopathic drops that are addressing certain aspects of my wellbeing.
An interesting website on diseases, and the minerals that each disease seemed to lack, suggested that CFers lacked Selenium, Potassium and Magnesium. I haven't followed that further yet, except I did take Selenium for a while but have run out of it - it would be interesting to see what happened if you took these three together in high doses.
I have included a link to the website I was referring from - its called "Mineral Deficiencies". I encourage you to have a look, its a very interesting read.
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Mineral Deficiencies