There are many times when I become frustrated and overwhelmed, feeling like I just can't get everything done that I need to do. I can't imagine how anyone could ever work even part time and still be able to complete the tasks necessary to run a home and take care of pets, family and themselves. Then I remember: Oh yeah! I have CF.
It may sound silly but there are times I forget about this little fact. Not in the sense that I don't remember I have it; on the contrary, it's always with me in the back of my mind. But I do forget that the treatments and extra tasks related to the disease aren't things that everyone else has to do. I need to step back and remind myself that I'm spending roughly 4-5 hours/day doing nebs, airway clearance, exercise and cleaning of the medical equipment. No wonder I can't get as much done as I'd like to!
A fellow cystic who is awaiting transplant recently asked me what my routine was; what do I do to stay healthy? She was looking to supplement her treatments in order to stay as healthy as possible before her surgery. It was somewhat eye-opening to write down everything I do that is related to my health and staying well. I'm going to record what I wrote to her here (but in more detail) so on the days I feel frustrated that I don't have as much time as I'd like, I can look at everything I do and remember that caring for myself takes up much of my time. As J likes to remind me, it is a full time job!
My day starts like this: Get out of bed. Drink a cup of coffee (lots of cream and sugar, I wish I could say it was only for the calories... it's just how I like my coffee!). Sit down and strap into vest machine. Start nebulizer #1: Hypertonic Saline. This takes about 20 minutes. Cough, cough. Continue with the vest, alternating settings for the maximum benefit. Start neb #2: Pulmozyme, which takes 15 minutes. More coughing, but at least I get to read some blogs and answer emails while I'm nebbing and vesting. Finally, neb #3: Colistin: my least favorite of the 3. It will take about 30 minutes and needs to be mixed up by hand by using a syringe to draw up 6ml of sterile saline and injecting it into the vial of powdered Colistin. It's very foamy when mixed so it needs to sit for 20 minutes or so until the bubbles subside. Finally I can inject it into the neb cup and start smoking it. Ugh! The taste is horrible and it causes my chest to be really tight, making me feel like I'm breathing through a coffee stirrer. This lasts for the entire time I'm taking it, which fortunately is only for 28 days on and then I get a break of 28 days off.
I'm finally finished with the nebs and vesting about 1 1/2 hours after I started. Time for breakfast- no skipping meals! After breakfast comes 30 minutes on the treadmill for aerobic exercise, which is very important for keeping the lungs in good condition and clear of mucous. Then 30 minutes of strength training to help me optimize my functional ability. Having only 45% of my lung function limits what I can do and the strength training makes my muscles more efficient, thereby allowing me to do more than I normally would be able to. Then some yoga and stretches and finally off to the shower. Oh, and I can't forget that the neb cups - all three- need to be washed in hot, soapy water and then boiled for 15 minutes to sterilize them. Whew! After all this I'm ready to start my day, 3 1/2 hours after getting out of bed.
The process is repeated in the evening, except for the exercise and one of the nebs (Pulmozyme)- therefore the process is a bit quicker. I find the evening treatments more of a challenge to be compliant with. In the morning I just get up and do them - if I need to be out early, I just get up earlier to allow the time I need. The evening, however, is more tempting to skip. If we're out or getting together with friends J makes sure I plan some time to sit down and do the treatments. I'm sure without his gentle encouragement, I'd be skipping the second set of nebs quite often.
The good news is that barring any unforeseen viruses, this routine has kept me healthy for the better part of 6 years. Typically, the statistics show that on average CF patients lose 2% of their lung function per year. I've miraculously kept mine steady since 2002, so clearly the time put into keeping well does pay off.
I think people have a hard time understanding just what I do with my time; even my closest friends (unless they have spent a few days with me 24/7) are unaware what my treatment regimen consists of. I think they would be shocked to know exactly how much time goes into my self-care. On top of that, CF is somewhat of an "invisible" disease: I don't look sick and except for my cough and the need to take pills when I eat most people would never even suspect there was anything wrong with me. The up side is that CF is fairly easy to keep a secret if I don't care to share it with someone.
There are times when I lose sight of the benefit of the treatments that have become so routine for me, but there it is: they keep me healthy. There will always be the frustration of not having enough time to do the things I would like to do, regardless of whether I take care of myself or not. In the long run it's good for me to remember that my health must come first and that all the time spent on treatments is not wasted: it is time well spent.