Sunday, May 15, 2011

Feeling okay while disease worsens

If you've been following my blog, you know that I've been feeling much better since I began using a fentanyl patch. And...while I am very grateful for the respite it has given me by improving my quality of life, I know my disease is getting worse.

I've developed a few new symptoms that are indicative of a failing liver. For one, I've been experiencing shortness of breath - especially in the evening. And, I have developed petechiae on my legs - caused by cirrhosis. Petechiae are "are pinpoint, round spots that appear on the skin as a result of bleeding under the skin" (Mayo Clinic). When you have a failing liver, your body is unable to produce enough platelets for your blood to clot properly. I bruise easily and my legs look scary! And last, I've been getting much more fatigued. I now find that I need at least 9 hours of sleep and I've been unable to keep my eyes open in the afternoon and often fall asleep where I sit. It's very weird, because I was a person who always got by on 6 hours of sleep and I could NEVER fall asleep unless I was lying down in bed. I couldn't sleep in the car, on a plane or in a recliner. But now I fall asleep sitting up!

The juxtaposition of feeling better with the knowledge that my disease is getting worse is confusing. I have to pace myself. One of my grown children had a minor emergency last week and I was happy I could drive there and help out for a couple of days, but the rest of the week had me down flat. I am just happy I'm feeling well enough to be able to help - something I could not do 6 months ago - but I am aware that I'm not getting better. It's a hard reality to face and I must make every day count, for I don't know when my liver will simply stop working altogether.