CFIDS: Our Children Suffer Also

I have had CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) for almost 20 years. It is a very real, debilitating and serious illness. CFIDS is a disease with a group of symptoms that are associated with severe and unrelenting fatigue. This is not just a normal tired that a person feels when they have done too much or worked too hard. The fatigue felt by CFIDS sufferers causes a substantial reduction in their activity level that lasts for months and years. Other symptoms of CFIDS include insomnia and poor sleep, achiness, short-term memory difficulties, increased thirst, bowel disorders, recurrent infections and exhaustion after minimal exertion. A group of symptoms called "brain fog" include difficulty with concentration, word finding, word substitution and orientation.

Because of the severity of my CFIDS, my doctor had always advised me to never have children. Although I had always dreamed of having children and this news was hard to deal with, I knew that it would be for the best. I never felt that it would be fair to bring a child into this world knowing that I could not do all of the things with him or her that a parent should. I had accepted it and I had learned to live with my decision of never having children. But life takes a funny turn sometimes and when I was 32 years old, I found out I was pregnant. The pregnancy was definitely not planned but it had happened and I had to make some serious decisions. My mother was afraid for me to go through with the pregnancy because of my health issues and she was very worried about my health. My husband was worried as well, but we both knew that I had to have this baby.

I have read that many times women with CFIDS while pregnant will have more energy and I found this to be my situation. I actually felt good for the first four months and I was able to accomplish more pregnant than what I did before. I continued to work full-time until the severe fatigue began to come back during my fifth month of pregnancy. From that point on, I was put on a reduced work schedule but I was still optimistic about my pregnancy and the upcoming birth of my son.

Just because of the general nature of my poor health, I had prepared myself for a hard delivery. I surprised everyone, myself included, when I gave birth after only 3 ½ hours in labor. Our son was born healthy and beautiful and I was the happiest woman in the world. To me, he was a miracle baby because he was never to be.

Even though the delivery of my son was rather quick and uncomplicated, my recovery wasn't. My 48-hour hospital stay turned into four days. I was not bouncing back well and my doctor was worried about my health. I was instructed by the hospital staff that I needed to walk around and to get moving, due to the normal leg and ankle swelling after delivery. But I physically could not. Fortunately, my newborn son was a very good baby and he slept almost all of the time and cried very little during my hospital stay. He even slept through his circumcision.

As a new mother, I was excited but I was also scared. How was I going to take care of this baby when there were days that I could barely take care of myself? My husband assured me that he would help and my family was there for me as well. I depended on my husband and mother a lot but we made it. Pretty soon, my son was starting to walk and I couldn't believe that someone with so much energy came from inside of me. At first, it was hard for my son to understand that mommy could not play with him all of the time. But over the past five years, he has learned to understand that "mommy gets too tired" to play sometimes.

He has had to learn to be independent at a young age because I can't always do for him, as I would like to. We can't always go to the park or to the library. There have been many days where he and I have had to just sit together and the only thing I can do with him is read a book or two. If I can't even do that, then he goes to grandma's house.

When my son was 2 years old, I had a severe CFIDS flare and I was bedridden for months. My mother had to come and live with us during that time. I only had about three hours a day that I could actually sit up and do anything with my son. We treasured those times and made the best of them.

We spend a lot of quality time together, it is just not always "physical" quality time. As a toddler, and a boy in general, I understand that he has a lot of energy and needs an outlet for that. He has been enrolled in daycare twice a week from the time he was 2 years old and I have a teenager come to the house once a week to play with him.

My husband and I are doing the best that we can and our son seems happy, but we know that my health issues have had a major impact on his life. Hopefully through this ordeal, he will grow up to be a kind, compassionate and understanding young man.