When I first was diagnosed with Advanced Late Stage Lyme Disease I had no idea how much in my life would change. So much of it already had changed (losing my independence, moving back home to my parents house, having to take time off of teaching, etc.) and my days had become filled with medical appointment after medical appointment and I was literally struggling to just take one moment at a time. In the midst of all of this I didn't realize how many other things that I used to do on a daily and ordinary basis all of a sudden shifted and changed too.
When I was healthy I didn't think about having a regular sleep schedule, getting up in the morning, showering, washing my hair, drying my hair, putting on make up, going to work, going to the grocery store (and other stores like Target or clothes shopping), making my meals, grading papers, going for a walk or run, getting my hair cut, eyebrows waxed, etc all happening in one day. I didn't think about all of the energy that each of these things took to just "complete" a day. But I definitely do now.
Those ordinary and routine things and tasks that people tend to do everyday without needing assistance (things that we often refer and think of as things for daily living) are often times extremely demanding for a person living with a Chronic Illness. Many times when people think about someone living with a disease they tend to focus on the medical aspects of coping with our diseases, and unfortunately there is a lot of times that things go unspoken about. The daily life things that encompass so much of who we are, or who you think you are and then are challenged to re-examine these beliefs.
I have learned a hard but important lesson in this journey. At first I felt like I was "sacrificing" who I was in accepting help with some of my daily routines and needs. I would try to "push through" even though so many people were asking how they could help. Unfortunately by denying their help I was often left more in pain, more exhausted, and then left without being able to enjoy my time with my loved ones like I wanted to do.
So I learned to accept help. I am so grateful for loved ones who help me with cooking my meals and now daily celebrate my accomplishments of now being able to do a lot of my own cooking (I love to cook) even if it is done sitting down a lot of the time. *smiles* I say a simple "thank you" to loved ones who help me with drying my hair so that I can spend the time coming to the table later on and enjoying their company. I have learned to let go of what I thought made me "more beautiful" by applying make up and doing my hair everyday and focus more on who I am and my loved ones. I have learned that I am a "girly-girl" to my core, but have also learned what being a woman is really about.
Back in September when I went cruising I remember saying to a woman on the trip on one of the last days of the cruise (I was beyond exhausted at that point) that I was going to skip doing make up in the morning because I wanted to spend the energy meeting up with friends instead. Her response was to belittle this decision saying that she would never be seen in public without makeup and that her mama raised her to "have pride in her looks" and she even went as far as to lift her eyes and say, "are you sure about that?". I admit that I cried because the implication was that I didn't have pride and that I wasn't pretty enough to be seen in public without make-up. As time continued this fall and I fought for my health and my life in a new and extreme way I see how far I have truly come - not only in this fight for my health but in my heart. I have learned that I don't need to do anything physically in order to leave my house or engage with those who are loved ones. True friends have embraced me even when my hair is not perfectly groomed or I didn't put on make up for our face-timing. Loved ones have sweetly held my hand and held my heart as I have been incredibly sick and able to offer nothing, especially my looks. This journey has taught me a great lesson and I have learned a great prize in this journey. What is on the inside is the most important.
Each day as I do things that most people find are easy and ordinary (cooking a meal, taking a shower, putting my contacts in, doing my make up, walking, etc.) I celebrate. I celebrate how far I have come in healing. I celebrate learning more about myself in this journey and becoming the woman I want to be - especially in my heart. I celebrate treasuring every moment with those that I love because I have had to "sacrifice" some of what I thought was important for what really is. I celebrate love. I celebrate those who unlike that woman on the cruise aren't concerned with my appearance but love me for being me. I celebrate these accomplishments of the "ordinary" while living with a chronic illness because I know how big the ordinary actually is.