But You Don't Look Sick

Hello everyone!


It is my sixth week, and I only have four more days of treatment! It really is hard to believe. I really get to go home on Friday!! The mention of home has never been more sweet to me!! How I have taken so many things for granted....the sound of my children's voices, the comfort of being with my husband, the ability to control my own schedule (without needles involved!), to clean my own house (am I really saying this?), to sleep in my own bed. I am so excited to get home. It is the same feeling I had as a child waiting for Christmas! It just can't come fast enough!



It has been an incredible six weeks. Infact, life changing! I will miss the wonderful staff at the clinic. They really do care, and they have been so supportive. I will also miss the patients. I have met some wonderful people. They come from all walks of life, and from many different places. However, we all share one thing...the loss of health, and the road to recovery. They have had very long roads, and I have been inspired by their stories. Most of the patients are professional men and women (nuclear engineer, mortgage banker, teacher, attorney, school administrator, full-time moms) who are now disabled and unable to work because of lyme disease. They have all been through traditional therapies, and have come here seeking hope. It has been interesting to see the similarities in our symptoms and stories. It is affirming and comforting.



Of course, we have had many conversations as we have watched our IV bottles drip. We haven't quite solved all of the world's problems, but I will get back to you on that one. I think we are close! Of all the conversations we have had, there is one conversation that has not left me, and I want to share it with you. Most of us have been told at one time or another, "But you don't look sick." We have talked about how hard it is to explain why one moment you feel fairly well, and the next moment you feel so fatigued you have to go to bed. Lyme disease (as well as many other chronic diseases,) is so different than having the flu or a cold. When you have an acute infection, you stop your life for a few days (unless you are a mommy!), you have that "sick" look and you go to bed. Within a few days, you feel better and resume your life. With lyme disease, you never know what you are going to get from day-to-day or even hour-to-hour.



There is an article that was written by a woman who has lupus about this very topic. Her article is called "But You Don't Look Sick...The Spoon Theory." In this article, she quantifies the energy to complete task and live life into spoonfuls. A patient may wake up with six spoonfuls of energy/strength one day, and two the next. As one task is completed, (such as showering) one spoonful of energy is taken away. The trick is you must plan your entire day and all the things to be done, and you never know how many spoons you have for the day...but when they are gone, they are gone.

The article and conversation with other patients has really helped me understand my own body. I was always frustrated, and never understood how I could feel okay when I woke up and ready to collapse a few hours later. I just never knew if I would make it until 11:00AM, 2:00 PM or 5:30PM. This visual picture has given me a better understanding, and helped me to be more patient with my situation. Of course, I am hoping for and looking forward to the day when I will wake up with enough spoons to get me through the entire day, but until then, I will appreciate every spoon I get!

This article is very good, and may help you understand anyone in your life who has a chronic illness. If you are interested in reading it, you can go to www.butyoudontlooksick.com, and click on The Spoon Theory.

I am off to get my push. By the way, Friday's reaction was mild, but I had less energy over the weekend. Feeling better today. I must have a few more spoons today!

Love to all!
Ronda