Cheryl Bachelor Hetrick lives with Pulmonary Fibrosis and each day cultivates the hope that eyes will be opened to what it is truly like for those who live with chronic illness. She writes...
I posted yesterday that the pulmonary doctor was pleased with my condition at this time. It seems that some took that as a sign that I am right as rain again. I hate to be a downer but that simply isn't the case. I may not have another hospital stay lurking around the corner but I am still sick; sicker than I was even just a few months ago. There is no stopping the progression of PF. I've been blessed that my progression has been slow and I am grateful for that.
I still have lost the life I had before. No more spending week-ends running all over the place looking for things for the house, hunting out the right paint, etc. I don’t drive at all any more. No more Do It Myself projects. Week-ends are spent in the recliner recovering from working the week before. That’s all I do all week-end is sit in the recliner reading, watching TV or sleeping. The same thing I do after work each and every day.
I can’t remember the last time I had the energy to even go to a movie. I miss out on weddings and birthdays and just nights out on the town. I only get to go hear Dirk & Tim play their music maybe once a year, and I can only do that if someone can drive me home early. There is no way I can close a club any more. Dirk does all the shopping now because I am out of breathe and shaking before we are half way through the store. He does all the housework except loading the dishwasher and washing my clothes. I can still handle those chores. I am lucky that I have a job where I can spend most of my day sitting at a desk. A job I need because of my sanity and the need for good health insurance. But when I do have filing or the like to do, I have to do it no more than 10-15 minutes at a time. Then I have to stay quiet at my desk for an hour or more. A 10 minute shower puts me back in the recliner for 30 minutes or more. Do you have any idea how demoralizing that is or to not to be able to vacuum your living room or mop your kitchen floor or dance with your husband??? I hope not. Because it sucks, especially if you are the kind of person who always had to “do it myself”.
I’m not saying all this in a bid for sympathy. I honestly don’t or need want sympathy or pity. Those are wasted emotions to me. All I, and others with health issues, want is -understanding. Please don’t assume because we are able to post to Face Book that our health issues are minor. We do things like that to try to maintain some semblance of normalcy. It is like grasping at straws but it’s all we can do. Don't assume because we look "good" in a photo that we couldn't be "that" sick. Not every pain shows.
I’m sorry if this sounds whiny to anyone. I try not to whine. But if I think that people don’t understand what a chronic disease has done to me, there must be others out there who feel that way, too. My hope is that eyes will be opened to what life is really like for people (and their families) with major health issues. With understanding comes compassion toward our struggles and acceptance of our limitations.
Thank You, Cheryl, for allowing me to share this and I admire you so for all that you do to raise awareness to this disease! Please visit Cheryl's page, Day By Day with Pulmonary Fibrosis on FaceBook at: http://www.facebook.com/pages/Day-by-Day-with-Pulmonary-Fibrosis/302280633161899