PATIENT STORY

By Lea Waddell

Hi, I am Lea (pronounced as Lee). I am in my fifties and living in Ohio. I have lupus, and I was diagnosed twenty-one years ago. It took several years and many doctors to finally get an answer as to why I felt so bad. It started with joint pain, low grade fevers, mouth sores, pleurisy, and muscle pain and weakness. Then I finally found a doctor on the advice of a friend, and he gave me an answer to what was happening to my body. The most important thing was it was not all in my head as some were trying to tell me. So here are some ways I have learned how to “cover myself” so I can take care of myself.

My Family!

I have such great support from my family. They are always there to help me when I need it or when I need to just talk. I have a husband and three children, all grown, married and out of the home. I have three wonderful grandchildren, and they are the best medicine I have been given!

My husband has been a major support to me with his love and understanding. His understanding of my illness has increased because he also was diagnosed with an autoimmune disease. Life for us has not been easy, but we make it work. We love each other and take care of each other.

I have learned that soft, comfortable clothes are a must! I like soft loose clothing that does not bind, because there are days that it just hurts to wear anything. Socks are a staple I cannot go without even in the summer months, and I wear wool in the winter. My feet are always cold; so if they are warm, then I can usually keep my body warm. I have a love for soft t-shirts that usually have either bands or are from the books I read. The weirder the better!

Books!

I have always been a big reader, and since there is a lot of down time, I have become even more so. It is my escape from my reality and a little reprieve from the pain. Reading for me is a way to live through others or just escape into another reality depending on what type of book I am reading. And I like to read all kinds of books. I also sew. I have been sewing since I was little and love to create interesting things. It helps me to have something else to focus on that does not include what is happening to my body.

Tea is another of the things that is comfortable to me. Hot Earl Gray in the morning on a chilly day goes a long way to warm up the bones. I drink iced tea in the summer.

Heating pads are such a wonderful thing! I go for the bigger the better to cover more areas. The heat helps with the achy joints and sore muscles to get a little relief. I have them anywhere I sit for any length of time. I also use pain relief rubs or patches and essential oils.

I think the biggest thing that helps is to listen to your body. And what I mean by that is your body will tell you what you need. This was one of the hardest things to learn, because at first, I did not want to admit I was sick and could not do the things I did before. I would just go and go till I would wear myself out, and it would take weeks to recover myself. I have learned to pace myself and take things slower and plan ahead. You must learn what your limits are and how to do the things you loved before in a way that you do not run yourself down so badly. Stress is a major trigger for me. But listening to your body and learning what you can manage and then figuring out ways to do the things you used to love to do is amazing. It gives you a way to live with this disease and still live your dreams.

I love the spoon theory. It is a way to help measure and manage your energy everyday. Each spoon represents the amount of energy that you have and you can use to do tasks or activities during your day. So, you start your day with so many spoons in your drawer, then as you do things you use your spoons up. Some days just getting out of bed takes many spoons, and some days you have extra spoons in your drawer at the end of the day. The trick is learning each day how many spoons it takes to do what you need to do and how to spread the spoons out.

Listening to your body is the only way to get your life under control and learning to live with your limits, which is how you live with your lupus. Each of us is affected differently by our lupus, and some of the things I find that help may not be for you. But, if even one of these helps, I hope you can find some comfort in that. Hang in there and know you are not alone in this fight. We are all in this together, so