Sleeping with O2 & percussing

And all there really is to combat anxiety of illness, is action. It's what I've come down to. A powerful, and frustratingly late lesson. Even when it doesn't work, action is soothing and gives you a sense of control that is so desperately needed.

4 or 5 mornings ago I woke up with the worst foggy/painful-head. I occasionally wake up with headaches, but its very occasional and I assumed that when it was time for me to offcially wear oxygen at night, they would be constant. I decided 5 days ago that it would not hurt to try sleeping with my o2 at a low flow rate to see how it goes. One of the (many) things holding me back was worrying about how loud the concentrator was, and its effect on my, but particularly my husbands sleep. We thought of putting it in the kitchen and winding the tubing to our room. Worked well. When I woke up after that night, I felt a clear head. It wasn't a lack of pain that was striking, but the clarity. I immediately thought this was probably pretty overdue.. Its frustrating how subtle it comes on though. For those of us who drift down in lung function with few exaccerbations and admissions, its really hard to catch the moment of change. Nevertheless, I even feel that some of the anxiety symptoms I was getting in the daytime have been lessened by this... I will have to bring it up at clinic.

Another change I've made recently is being committed to doing more physio. My 3 years of consistent one-a-day physio has had its run, and its time to up my game. Recall that I did very very little physio for all of my teen years/young adulthood. Close to none, in fact. I finally realized, after many attempts at a second physio with my flutter, that maybe if I did percussion, I would be more compliant. Lets face it, percussion is easier. When you stick a tool in your mouth and exercise directly from the organ that is dying on you, it's very wearing. I was always known to make things harder than they needed to be.

So, I decided to bring back the percussor into my life. I had one last when I was maybe 8 or 10. I ended up getting the Eper500 2 weeks ago. I went through hospital channels and therefore did not actually choose my percussor but its kind of nice that I know the family who created this one have a daughter with CF and therefore understand the whole process, lifestyle, challenges, etc.

I wish I could coach noncompliant teens like myself through CF. Actually, I never even considered myself noncompliant. . I really just trusted that I was going to be okay, despite what the numbers were saying. I mean, when you feel like crap, often you don't realize it until you are made to feel better and can see the difference. My first admission went like that, and was the first step on the road to my changing. A step I fought for years. I swear if I can get through this leg of my journey and come out the other side I will help as many CF'ers as I can to see everything as it really is. There is too much at stake to wait to learn.

Role reversal

So the oxygen-at-home thing is a couple weeks old now. I've been all over the map with it. Indifferent, contemplative, upset, angry, scared, etc etc etc. . I didn't expect so much out of something I requested myself (and for exercise alone). Regardless, I wear it when I do my wii fit or my exercise bike. I wore it once walking my dog in the park, and once speed-walking in the mall. I find I feel different about it depending on who I'm with, not so much how many strangers I'm around. With my mom and sister I don't really care about wearing it, I feel safe and strong and like I'm doing good for myself. With my husband its a bit different. I feel like a burden, and like I don't want to be seen publicly with him and with O2 because it makes his life appear less 'normal' at 27 years old... He, on the other hand, doesn't seem to mind at all. He is the one who encourages me to bring it everywhere and anywhere we have to walk. I'm a lucky girl is all I know. I've just got to work on my own perspective.

This oxygen thing has got me thinking overly about transplant too. I worry a little more, and everything relates in my mind to 'what if I'm listed at that time..' whenever I'm thinking about any kind of distant plans. You would think this would have been plaguing me for longer than this, and I guess it was but it's emphasized now. It will never be easy to make the transition to 'waiting for a transplant' but I'm grateful to get some sort of acceptance over with mentally. I guess its just how I like to do things, in steps.

Finally, my grandmother has been having some heart problems as of late especially. Tonight I went to visit her in the hospital. Its been a really long time since I visited anyone else in the hospital. I had been avoiding it her last few admissions (for obvious reasons) but felt it was time to show my support, carefully. There was something extremely powerful about being the visitor instead of the visitee. Its like I needed that for myself. Maybe because of the recent implications that things are on a downturn for me, or maybe just because it made me feel like I could do something a little more helpful and important with my time while Mike's at work. It was a win-win for Gramma and me, and I hope (but doubt) she felt as refreshed and positive as I did after our visit.