Saturday, April 23, 2011

Understanding Fibromyalgia and Your Family

A fibromyalgia patient typically experiences the “seven stages of grief” when they hear the words, "There is no cure." I know I did. Looking back and plotting along my timeline, I can almost identify each stage. I say almost because of this damn "fibro fog" and my memory problems. Anyway, for the most part, I think I've finally reached acceptance. Of course, this doesn't mean I've given up on my search for a more effective way to manage my symptoms. I will continue my search until researchers develop a cure.

The most difficult path traveled on my journey towards acceptance, aside from how it affected me, was knowing how my illness affected my family.  Last winter, while I sat wrapped in a heated blanket, my son cuddled up next to me and asked, “Mom, when are you going to be fun again?” Knife.Stab.Gut.Twist.Heart. Wrench. Both of my children remember and miss their fun mom. The mom that played four-square, basketball, freeze tag and a countless number of other games with them. The mom that took them to Skate Rattle and Roll on Friday nights and the mom who coached their soccer team. The mom I'm desperately trying to resurrect, while accepting my limitations and learning to pace my activities at the same time.

Of course, the children aren't the only family members missing me as I once was. My husband does, too. He misses his fun-loving wife, his best friend. The person who could hold her end of a conversation without having to search for words or loses her train of thought because of "fibro fog." He misses other things, too, like going out to the movies and/or socializing with friends. We RARELY do these things anymore. I'm either too tired or too sensitive to the noises and lights in environments outside of our home. Mostly, he misses the passion.

So many marriages have crumbled because of this illness and I thank my lucky stars everyday that I married a man, my soul-mate, who loves me and truly accepts me in sickness and in health. I fight so that we can continue on our journey through this life together, as soul-mates, lovers, and best friends.

It goes without saying, fibromyalgia completely alters and disrupts the lives of families. There are strategies you can apply to support your family just by opening up the lines of communication. It may not be easy, nothing with fibromyalgia ever is. The key is being open and honest, in order to create a better understanding of how you're feeling, in addition to creating sympathy and compassion towards your family member's needs.

  1. Be considerate of your partner’s feeling. Ask your partner how they are doing on a daily basis and set aside time to talk about their health and well-being.
  1. Plan some fun time. Write down a list of fun activities that you and a family member can enjoy together. This is a chance to reconnect with a loved one and let them know how much they mean to you.
  1. Be a good listener. One of the most important things you can do to strengthen any relationship is to listen well and be perceptive.
  1. Allow your partner to have her own leisure time. If you and your partner used to enjoy a sports activity together but you can no longer participate because of fibromyalgia, allow your partner to get out and partake in the activity.
  1. Maintain a positive attitude. A positive attitude will reflect well on you and make your partner feel better about herself.

  2. Keep a journal. If you suffer from fibromyalgia, keep track of your moods in a journal, note your symptoms and if any specific incident led to your mood change. This way you can become aware of how your moods change and what you are feeling about them.
  1. Consider joining a fibromyalgia support group. By joining such a group, you can share your frustration with the syndrome and also share future hopes and goals.
  1. Rethink your sleeping arrangements. If you and your partner are on different sleep schedules, you may want to consider getting separate beds. Lack of sleep is debilitating for every person especially for those suffering from fibromyalgia.
  1. Sign up for a class. Join a yoga or meditation class with a family member or close friend. It would be a great way to relax, relieve pain and bond at the same time.
  1. Explain your symptoms to your loved ones. Fibromyalgia patients often have memory loss. Explain to your loved ones that you care about what they tell you but that you have trouble remembering details.

Recommended Reading:

1 comment:

  1. It's been an adjustment for us all, but we love you and I'm excited to read each one of your posts, as it's a chance to gain insight through the "fog". Love you.