Hello, my name is fibromyalgia. I’m here to introduce myself and let you know how I’m going to change your life. I want to participate in your work life, social activities, family life, household responsibilities, time off, all aspects of you. Initially, you won’t know it’s me. You may think that you are getting older and that some things are changing naturally. However, you will soon discover that it affected every part of your life and that things can change drastically.
I want to know you, every fiber of your being. What does the sign do to you? What excites you? What keeps you involved in social activities? Who are your friends? Does your family support you? Will your friends and family hug me the way I hugged and clung to you?
Let’s see, what can I learn about first? I think I’ll focus on your work life first. Have you noticed that after sitting at that desk working for a while, it’s a struggle to stand up and stand your ground? Yes that’s me! The pain you feel is not just the effect of getting older, but the effects of me, your new friend. What else is changing at work? Is it harder for you to focus and keep up with all the changes that are taking place in your department and company? Are you easily confused and unable to concentrate very well? All of these are me intervening in your life. Before long, you may realize that you are missing a lot of work and question your performance. If this happens, be sure to consult your doctor and obtain the necessary notes to protect your job and / or your benefits. I hope you have the kind of job that gives you those benefits.
One thing that I will change for sure is your sleeping habit. You probably don’t feel very rested after a full night’s sleep. Even if you slept through the night, you will still feel tired. That’s me, again, sticking my head into one area of your life that will affect all other areas of your life. Along with the aches and pains, I bring fatigue with me. At first, you may enjoy staying in bed longer, but after a while, you and I will have words about how lazy you feel. It is not my intention to make you feel this way. I really just want to be noticed and the fatigue really makes me notice. I like to be the center of attention. If you are spending more time in bed, do a few things that can make it more enjoyable. For example, get a few sets of your favorite soft sheets. Put some easy-to-read books , word puzzles, coloring books , and other easy things you enjoy next to your bed. When you have the energy, do something you enjoy. Don’t forget to have water by your bed. You will need to stay hydrated.
Next, you may find that your social life is getting screwed up. I’ll get in the way of your weekend plans, whether it’s hanging out with friends, going to church, playing on a sports team, or just enjoying a weekend on the coast. If your friends accept me in your life, they will understand. They can even work around their new schedules to spend time with you. Those are some good friends you have! Be grateful for those kinds of friends because many people I live with tend to slowly lose touch with friends who are not understanding. You know, it can be helpful if you tell them all about me and how your life will be affected. I know it’s embarrassing, but that may be the best advice for you. Maybe that will help your friends understand that it is not the way you choose to be now and that you will fight when you can.
Your family will know me very well. There may be days when you don’t see them even though you live in the same house. You will probably spend a day here and there sleeping in your room because the very thought of waking up is exhausting. If you can, let them know in advance when it bothers you the most. Times when the weather is changing, cold or wet seems to be my favorite time to meddle. Make sure your family knows that you love them and that you are not really trying to avoid them. Perhaps on the days when I leave you alone, you can work with your family to prepare meals in advance. Then all they need to do is heat the food. Of course, running out of burgers or tacos can also be a great option. Try to keep fresh fruits and vegetables around the house so there are healthy options not just for us, but for the whole family. Some families I know are very supportive of each other. Unfortunately, not all of them are like this. Have an open discussion about who I am and the effects I have on you so that I am fully understood. If possible, see if there are in-person or online support groups for the families of the people I meet. That can help you understand my full impact on your life.
I love your house. We will stay there a lot now. Sometimes it will seem like I’m keeping you from doing what it takes to keep it organized and clean. Be patient with yourself. Let’s get up together and do a little bit at a time. Dishes, for example, can be made in steps. First, empty the dishwasher and store clean. You need to rest? Then do it! Next, start filling the dishwasher with dirty dishes. Taking is slow and easy if necessary. If there are dishes that need to be washed by hand, let them soak in soap and water for a while. Once you’re ready to get up and do some more, they’ll be easier to clean up. Wash clothes in the same way. Do the loads when your energy is high. It may take a day or two, so plan to do what is necessary first. Can you ask family members for help? After all, it’s your clothes and dishes too! When you accomplish something, do a celebration dance or just look in the mirror and congratulate yourself. You are wonderful! Even with me by your side every step of the way, you did a few things. Sometimes the best self-care involves encouraging yourself with positive thoughts and looks.
Now that I think about it, make a list of all the things you love about yourself. Keep that list close by for those times when you don’t really feel good about yourself. Keep a journal close by and acknowledge yourself and the things you accomplish on a daily basis. Maybe it’s just going from the bedroom to the living room to watch TV. Maybe it’s taking a shower and washing your hair. There will be times when I will try to prevent you from even brushing your teeth. If you feel this way, get up, brush your teeth, and write it down as an achievement. While you’re at the sink, look at yourself in the mirror and say “good job.”
Remember, my name is fibromyalgia. Yours is not! You are simply someone who is learning to live with me. Some days will be better than others, that’s true. However, you are always a gift. You are always loved (even when you don’t feel like it). You fight to make your life and that of your family the best you can and that is wonderful. Just as we try to say uplifting words to our children who are learning (and sometimes failing) to do new things, you are learning to live with a condition. You are not the condition. Find ways to keep those positive thoughts about yourself on your way. After all, you are amazing!