Living with It

Last week was hard. I had more daily pain than the week before and that felt like a step back. I actually said aloud "I'm not sure if I can keep doing this," meaning the tedious balancing act that is my life right now while I try to get this "flare up" of interstitial cystitis under control. I get up in the mornings, tired and sometimes already hurting, and try to pull myself together so that I look presentable for work.

At work, only a couple of people know that I am still having medical problems. I decided it was easier to deal with a chronic illness like this without having to give a daily update on my pain level and progress of treatment. Everyone I know is just rooting for me to be well and it's too hard for me to give the news over and over again that I'm not. So, I take my medicine throughout the day and try to keep my pain level under control and a smile on my face.

After work, I go home, change into something comfortable and then throw together a meal for Bryan and myself. When I'm in too much pain to cook, I ask Bryan to pick up take out on the way home. We eat and then I have about a half hour of tolerance for doing some housework or upkeep. Then, I lay down and read, watch TV or take a hot bath until bed time.

If I can't go straight home from the office, like on nights when I have a work or Junior League obligation, I absolutely dread it. I know I will be tired and emotionally drained the next day. So, I have eliminated everything not work-related from from my schedule for the time being so that I can just try to keep getting out of bed every morning.

That being said, sometimes I crave a little fun. There are special life moments that I don't want to miss because of this. For instance, last weekend, we went to Tulsa for my high school reunion. We carefully planned our schedule so we'd only be away from home one night and I could still get plenty of rest. I did my hair and actually wore makeup, donned a sexy black cocktail dress and made the most of the opportunity to catch up with old friends. We had a good time. I'm glad we went and the careful preparations we made helped with the usual pain and exhaustion.

Last week, Bryan and I spent some time researching a diet that is supposed to be helpful to people with Interstitial Cystitis and made the decision to try it out and see if it brings me some relief. It is basically a way of eating that removes all acidic food and drink from your diet including coffee (damn!), alcohol, chocolate, vinegar, tomatoes, mustard, all citrus fruits and juices, spicy seasoning, soda or sparkling water and on and on. I had resisted trying the diet for several months because IT SUCKS. But, I finally reached the point where I was willing to make that sacrifice just to see if it helps, even a little. So, no lattes, chocolate desserts, chips and salsa, pizza or spaghetti, sushi dipped in soy sauce, glasses of wine or sips of margarita for a long time.

Lately, this illness has made me struggle with guilt and feelings of inadequacy. I feel this way because I can't offer the same level of energy, love and enthusiasm to the people in my life as before. I had my parents over for the Labor Day weekend and my Mom ended up doing most of the cooking. I hate that! I have always loved being the "hostess with the most-est" and that is definitely not me right now. I worry that I am self-absorbed around my close friends and family, constantly being the person with a prayer request and a need for help.

I also feel terrible for Bryan because of the way this affects him. I no longer delight in planning our menus and cooking our meals. I don't often feel like being romantic or playful. I can't weed my rose garden or vacuum the carpet without help. I cry a lot when we're at home together and he has to hold me and calm me down and rub my side when it hurts too much. I feel certain that I must be a disappointment and I grieve for the life I had and the person I was before this.

And yet, the sun rises every morning and God gives me the strength to face another day. The love and support of my husband, family, life group and friends sustains me a little longer. Something happens at work to make me laugh a deep, good belly laugh. I read something in the Bible that gives me hope for healing and assurance that this is part of God's perfect plan for me. I get a text message from my sister that makes me smile.

And, that's how I'm living with it.