Friday, June 6, 2008

Lazy Days but Relaxion Hard to Find

I know it's been awhile since I've updated. I apologize... in part, it's not because that I've been too busy, or too tired, or had nothing to say... I just haven't. It's hard to explain. In many ways I feel like I'm stuck in Groundhog Day. Each day with ever so slight changes, but the script plays out with the same arch's day in and day out.

I wake up in the "morning", rather it be morning at 11:30 am or 2 pm. I drag myself from bed, usually try to motivate myself to find food and do my meds. Some days I succeed, others I fail. If I have something to do that day, I head out in the world. Sometimes those days are amazing and great and happy. Others I don't feel good and they are painful and dreadful. I never know what I'll wake up to.

By 6pm I've usually ate, done meds, and possibly gone out for the day... or I've spent the day watching TV in bed. I start to think what I'll do for dinner for Matt and I, possibly get up and start cooking, or other days resign myself to something quickly thrown together as that is all the energy I can muster.

Evenings is when I'm usually at my best. I watch TV with Matt, I become more animated, more energized. I've always said I'm at my best after 7pm. I'll take my bath, do my meds, and feel good and happy for a few hours.

Then into the wee hours of the morning 1,2, 3 A.M., Matt and I curl up in bed, read, and go to sleep to start another day.

What's special about this script? It's full of my trying to accept me. Figuring out what I am still capable of doing. Pushing myself to do what I can. But struggling deeply to find acceptance when I can't do something. That's been the story of my life for the last year or so. I've always been so capable despite my health. I was able to exceed so many expectations of me. Now, I can't. Some days picking up clutter in the house is enough to wipe my energy for the day. And that is so hard for me to take. I don't like it, I don't want to accept it, but I really don't have a choice. I lash out at those that help me, I've never liked help in the first place, but now the fact that I need it hurts me deeply because it makes me realize how much I've slowly lost. It's said that you don't miss things until they are gone. Slowly, my physical abilities have wained... and I often question when things disappeared. Because they left me so slowly, I sometimes don't realize how much I can't do until I try and fail.

Given all that, I'm still trying and fighting. Really there is no choice. I'm working on accepting what I have... valuing it because things could be worse. I'll forever be grateful for how long my CF held off. What I was able to do that so many others were unable to do. I'll fight jealousy at those who still can operate like a normal person.

Quick Prayers and Blessings:

Nate, Tricia, and Gwyneth are home on the Outer Banks of North Carolina. Their story still amazes me. All the blessings, the grace of God, and strength in the darkest times.

My Grandmother is going in for gall bladder and hernia repair surgery on Monday. I'll be taking care of her for the most part. While I know that it should go fine, I'm naturally worried. She's 82, so any surgery is not taken lightly. Prayers are needed for her. I will try to be as nurturing as I can, something that does not always come easily to me.

Lastly, I leave you with a video from my beautiful Eva. Watch it. At 8 minutes, it is long, but so powerful. If you want an idea of what CF is like, then watch. Eva is living beautifully, thanks to the gift of life that she received last Fall.