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.
A good rant as always Michelle, lots of good thoughts from you and hopefully they can help both you and others in the future. Glad to see you are changing it up again, you go girl!
ReplyDeleteI needed 02 at night wayyyy before I 1.actually admitted it, and 2. the insurance co approved it. I would wake up with horrible headaches that would take 2 hours to go away and when it was really bad, I would wake up drenched from sweat. I could have slept 12 hours and waking up, it felt like I slept 5 minutes. The first night I slept with 02, I had the best night sleep.
ReplyDeletePs. I also out mine in the hallway and I threaded the tubing up the stairs, to one side so no one trips on it.
Michelle,
ReplyDeleteI know how you feel. I always wished that CF kids/teens/and even adults listened to what the doctors, clinicians, and even other patients had to say. For some reason I was pretty much always compliant. I had a rough run in my first year at University, but after 5 months of that I realized that there was too much at stake. (like you said). I often feel guilt that I was unable to help people that just didnt believe the illness was going to get them in the end. Some people, in my opinion would have made it to see and feel their new lungs, and could have lived long and productive lives. Ahh...that's in the past, and i guess there was not much I could have done in the end anyhow.
I am glad at your wisdom, and your ability to focus on being productive at this time. Keep it up. The o2 is essential at this time, not just for our comfort, but also for all the things that you are preventing leading up to tx. Your body needs oxygen, so does your brain!! Keep yourself well saturated, and you will feel way better. When I first starting to wear oxygen, (about 6 months prior to tx) the change was amazing. No head ahces, upset stomach, less coughing, brighter complexion. And yes, no foggy brain. It was terrible, but I had no idea that's what it was until I went to clinic and they checked my sat.
Anyhow, keep it up. All of it. I can sense your stuggle, and I wish you didn't have to go through it. I look back now and I can't believe I ever had to go through so much. But as you said, all you have to do now is get to the other side. I cannot wait however to read this blog one day and find out about all the things that you are able to do. It's going to be a pleasure Michelle.
Nat