Imagine waking up each morning -never knowing if you will be able to get out of bed or not. Imagine taking your shower and brushing your teeth. Then imagine having to go back to bed because those two simple tasks have depleted all of your energy. Imagine not knowing from one day to the next if you will be able to care for your child because your body just physically will not work. Imagine trying to explain to your toddler day after day that you are too sick to play with him, yet still trying to make him feel loved. Imagine your aging parents having to care for you – and you are only in your thirties. It is a scary thought, isn’t it?
I have been living with Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) for almost 20 years. I became ill at the age of 21 and have never recovered. My symptoms have waxed and waned, but increasingly I have worsened during this time to where I can no longer work. There are times where I am even unable to care for my family.
CFIDS affects approximately one million people, yet the disease is still one of the most misunderstood diseases today. And if you are young when you become ill, you are even more misunderstood. Society has trouble grasping the fact that even young people can be ill, have no energy, and have to rely on Social Security and their elders for help. Most of us who suffer with illnesses like CFIDS have spent years going from doctor to doctor being made to feel as though we are hypochondriacs. Imagine knowing that you are sick – yet no one believes you.
This disease does not only rob your energy and overall health. It also robs you of your identity and individuality. Before this illness, I was a very active, energetic young woman who loved life, working and had a bright future ahead of me. Once I became ill and could no longer work, I no longer felt as though I were a whole person. Who was I now that I could no longer wrap my identity around my family, friends, and career? I was alone because no one else can possibly identify with the debilitating effects of CFIDS.
I have made it a point to try and get the word out on CFIDS as much as I have been physically able to and write frequently on Fighting Fatigue as a means of support to myself and others fighting this same battle. Educating the public is the only way that we can continue the fight for a cure, understanding and compassion. In the meantime, I will continue fighting fatigue – one day at a time.
You are so right. Every day I wonder…..will today be a good day or a bad day? And will I be able to handle all that is thrown at me?
I love my family dearly. It breaks my heart that I have to let them down.
Thanks for always being there for me FF *heart*
Sickinpink – It is hard to deal with. I think we are both very fortunate though to have such supportive husbands. My ex-husband was never able to handle my illness. He always accused me of “faking”. Take care!