Full-time Patient

A few of my online CF friends have "full time patient" or "works at CF" listed as their careers on facebook. I used to kind of snicker when I saw that. Like, seriously, I've been the patient for years and I still manage to have a very full and productive life that does not revolve around CF - spare me the drama.

It's the same for some healthy people who may see "full time mom" listed as a career and think, seriously? That's all that defines you now? That is your life work?

But now I understand. Because CF really and truly has become my full time job. It takes me a minimum of 2 hours to get out of the house to do anything in the morning - and I'm often late to everything these days. I am trying to get a fourth vest treatment in every day. On the days I have pulmonary rehab (Tuesday and Thursday every week), it is amazing if I can get anything else done that day...doubly amazing if I have the energy to BOTH go to the grocery store and cook dinner. I used to run "errands" but now it's more like "errand."

But my home is still my castle. And even though things may pile up for a couple of days, I still manage to keep things looking decent, especially for visitors. Really, I have to or I would go insane.

And I have so many appointments...  I try to give myself Mondays off, a day to catch up on phone calls and house work. For example (and this past week was pretty light) Wednesday, had I not started on IVs, I was going to see my shrink and acupuncturist. Friday, I had both Tobra levels and a gynecology appointment at the same time! (first time for everything) Then in the afternoon, I drove to Chapel Hill to have a Doppler scan to make sure the pain in my arm wasn't another blood clot (it was not - thank god!!)

Oxigination

Sometimes I try to step back and see how much my life has changed in the last three months. Coincidentally, this is the amount of time I have been on short-term disability from work. I SO wished the extra time dedicated to my health would have me in better, not worse, shape than when this all started. But sadly that's not the case.

Probably the most obvious changes are a constant nasty cough and the need to wear oxygen more and more of the time. Well, and my depleted energy, but that's not always noticeable to people if I'm acting like my normal bubbly self. I am trying to embrace this new roll, but it isn't always easy. And I've learned pretty quickly that I have to let a lot of things go - whether it be house work, a non-essential errand, or that thing I've really really been wanting to get done but just haven't had the time or energy.

My biggest challenge right now is the mental game, though. I continue to research everything and visualize the possibilities that lie ahead for me - both good and bad. I want to try to prepare myself as much as possible. I know that things are going to get much worse still, and I want to be able to accept things as they happen.

I am aware of all the scary possibilities, but that doesn't mean that they have to happen to me, or, if they do, that they have to be scary. Not sure if that makes sense. I am training my inner Zen master.

Busy bee

I've been busy.

I am always busy, but particularly with the soap event we have coming up in a week, there has been more to do than I ever imagined. Not that I am doing it alone. But it has taken more time and mental energy than I thought.

I want to tell you about something strange that happened. First of all, my energy still is not my normal since my cold four weeks ago. It has been hovering around 90% for the last two weeks. It's enough that I'm working my normal hours, but not enough that I've been able to exercise like I would like to. (Sadly, that is the thing that gets dropped after work, errands on the way home (which sometimes seem endless), napping, and doing therapy...by then it is dinner time.)

Starting the week before last, I have found myself extremely tired after work. Like, I'm fine until I leave the office, but starting at that moment, all I can think about is taking a nap. And the 35-minute drive has seemed tedious for the first time since I started my job. It was one such day that I was driving down the highway and felt an incredibly strange sensation wash over me - it started as I-don't-know-what and ended as a panicked type of feeling. I pulled over, checked my blood sugar (which was a bit low but not enough to cause crazy symptoms), regrouped and then continued on. But what was it?

Since then, I have been getting feelings of panic from time to time throughout the day - especially when I am driving. It never escalates into a panic attack, more an underlying sense of unease or nervousness about my well being. I have noticed that it happens more often when I am tired. Afterward, I decided that I was doing too much, and that I needed to reprioritize: not work over my 5 hours per day; make sure I was getting enough rest at night and napping after work if needed; and really trying to exercise, if I had the energy.

Basically, it's how I get when it's time for IV antibiotics, only my lungs are doing great right now. I'm ready for the world to stop, or at least slow down, while I take a rest and then rejoin when I'm feeling up to it again.

My week of reprioritizing had mixed results. And let me tell you, it has been really hard to slow down. Almost like I am addicted to stress or busy-ness - how un-yogic is that! Anyway, I did manage to get more rest (napped every day after work - very unlike a healthy me) and worked less, but my anxiety has continued, and my sleeping seems (while I don't allow it) to be somewhat insatiable.

So what's going on? Yes, life is busier than usual and I have personal and family health issues I've been dealing with. But I feel like with my dad having been sick, and the pending decision about gallbladder surgery, my body is just now catching up to the emotions I've been going through for the last month...and it's not handling it well. I've also found myself feeling depressed.

I wonder if it's time to talk to a councilor - or even begin a spurt on an antidepressant (while I dislike the idea in general, I also used it before to get through a tough time in my life.) And I also wonder, if something has to give, what is it?

I know one thing for sure: I can't go on like this. And if I do end up going through gallbladder surgery, I want to have all of this unusual emotional stuff as sorted out as possible.

My goal for next week is basically the same - I'll let you know how it goes.