Hi, my name is fibromyalgia. I’m here to introduce myself and to let you know how I’m going to change your life. I want to be involved in your work life, social activities, family life, household responsibilities, rest time – every aspect of you. Initially, you won’t know that it’s me. You may think you’re just getting older and some things are changing naturally. However, you’ll soon find out that I affect every part of your life and things may change drastically.
I want to get to know you – every fiber of your being. What makes you tick? What gets you excited? What keeps you involved with social activities? Who are your friends? Is your family supportive? Will your friends and family embrace me the way I’ve embraced and stuck to you?
Let’s see, what can I learn about first? I think I’ll focus first on your work life. Have you noticed that after sitting at that desk working for a while, it’s a struggle to stand up and be steady? Yep – that’s me! The pain you feel is not just the effects of growing older, but the effects of me, your new buddy. What else is changing at work? Are you finding it harder to concentrate and follow all the changes going on in your department and business? Are you confused easily and unable to concentrate very well? These are all me interjecting myself into your life. Before long, you may find that you’re missing a lot of work and your performance is being questioned. If this happens, be sure to see your doctor and get the required notes to protect your job and/or your benefits. I hope you have the type of job that gives you those benefits. You’re probably going to need them.
One thing I’ll change for sure is your sleeping habit. You’ll probably not feel very rested after a full night’s sleep. Even if you slept through the night, you’ll still feel tired. That’s me, again, poking my head into an area of your life that will affect all the other areas of your life. Along with the aches and pains, I bring fatigue with me. At first you may actually enjoy staying in bed longer, but after a while, you and I will have words about how lazy you feel. It’s not my intention to make you feel that way. I really just want to be noticed and fatigue really gets me noticed. I like to be the center of attention. If you’re going to be spending more time in the bed, do some things that may make it more pleasant. For example, get a few sets of your favorite soft sheets. Put a few easy to read books, word puzzles, coloring books and other easy things you enjoy by your bed. When you have the energy, do something you enjoy. Don’t forget to keep water by your bed. You’ll need to stay hydrated.
Next, you may find that your social life is being messed up. I will interfere with your weekend plans whether they be hanging out with friends, going to church, playing on a sports team or just enjoying a weekend at the coast. If your friends accept me in your life, they’ll understand. They may even work around your new schedules to spend time with you. Those are some great friends you have! Be thankful for those types of friends because many people I live with tend to slowly lose contact with friends that aren’t understanding. You know, it may be helpful for you to tell them all about me and how your life is going to be affected. I know it’s embarrassing, but that may be the best piece of advice for you. Perhaps that’ll help your friends understand that it’s not the way you choose to be now and that you’ll fight through when you can.
Your family is going to get to know me extremely well. There may be days you don’t see them even though you live in the same house. You’ll probably spend a day here and there in your room sleeping because just the thought of getting up is exhausting. If you can, let them know ahead of time when I’m bothering you more. Times when the weather is changing, cold or wet seems to be my favorite time to intrude. Make sure your family knows you love them and you’re not really trying to avoid them. Maybe on days when I leave you alone, you can work with your family to make meals ahead of time. Then all they need to do is warm food up. Of course, running out for hamburgers or tacos may be an excellent choice also. Try to keep fresh fruit and vegetables in the house so there are healthy options for not only us, but for the whole family. Some families I get to know are very supportive of each other. Unfortunately, not all are that way. Have an open discussion about who I am and the effects I have on you, so they fully understand me. If possible, see if there are in-person or online support groups for families of people I encounter. That may help them understand my full impact on your life.
I love your house. We’ll be staying there a lot now. Sometimes it’ll seem like I keep you from doing what is necessary to keep it organized and clean. Have patience with yourself. Let’s get up together and do a little bit at a time. Dishes for example, can be done in steps. First, empty the dishwasher and put the clean ones away. Do you need to rest? Then do so! Next, start filling the dishwasher with dirty dishes. Take is slow and easy if you need to. If there are dishes that need to be washed by hand, let them soak in soap and water for a bit. Once you’re ready to get up and do a little more, they are easier to clean. Do the laundry the same way. Do the loads when your energy is high. It may take you a day or two, so plan to do the necessities first. Can you ask for help from family members? After all, it’s their clothes and dishes, too! When you accomplish something, do a celebration dance or simply look in the mirror and congratulate yourself. You are awesome! Even with me by your side every step of the way, you got some things done. 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 you’re not really feeling that great 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 getting a shower and washing your hair. There will be those times that I’ll try to prevent you from even brushing your teeth. If you feel like that, get up and brush your teeth and write that down as an accomplishment. While you’re at the sink, look in the mirror and tell yourself “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 struggle through to make your life and the life of your family the best you can and that is wonderful. Just as we try to speak uplifting words to our children that are learning (and sometime 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 coming your way. After all, you are amazing!