It's been a bad week. I woke up Tuesday feeling very nauseated. I thought it was from a cough medicine that I restarted about a week before and so I stopped taking it. But here I am still nauseated 5 days later. I've hardly eaten anything for five days. I had an abdominal Xray yesterday that looked "stone cold normal" so we don't know what is going on. Last week I was so hungry and this week I am so sick. I am so tired of the rollercoaster ride. My shortness of breath is also worsening. Last night I had to sit while I brushed my teeth and just stand up when I was ready to spit. I am breathing hard just walking ten feet to the bathroom and back. The physical part of it is bad enough, but I realize now that my ability to cope mentally is fading. It is so hard to be hopeful when I cannot seem to get more than a few days in a row of feeling ok. I'm not expecting to feel great; I just want to be comfortable enough to get out of bed and be with my children for a few hours a day.
This morning I woke, took my meds, dressed, and went downstairs. Aidan was eating breakfast and Amelia was reading yet another Nancy Drew book. When Aidan saw me he said, "Yeah! Mommy is downstairs. Three cheers for Mommy: Hurrah, Hurrah, Hurrah." It was sweet but sad at the same time. I feel like I am ruining their lives with my never ending maladies.
After my TPN was done, I flushed my lines and Bill and I decided to try doing chest physiotherapy and postural draining to see if we could clear the mucus from my lungs preemptively. This involves me lying in various positions while Bill bangs on my chest with a cupped palm. After thirty minutes of this we were both exhausted. They have vests that accomplish the same result but my insurance won't cover it because I don't have cystic fibrosis. Who knew pulmonary fibrosis wouldn't impress them enough? Bill did find a good website for people with pulmonary fibrosis and interstitial lung disease where I got lots of useful information on controlled coughing and different types of breathing. Maybe that information will prove helpful.
Sorry to be such a downer today. I am just losing hope again. I know I should look on the bright side: the TPN seems to be going fine; I am here; I am surrounded by a loving husband, children, friends and family. Why doesn't it feel like enough? I'm just tired of suffering and I am beginning to realize why people believe in and crave eternal life. I am tired and I want to go to sleep and wake up somewhere where my body no longer limits me. Maybe I am wrong to want that now. Maybe that makes me a terrible mother, an ungrateful person. But I am only human.