Wednesday, July 31, 2013

Hello to anyone who reads this blog. My purpose in creating it is to share my family's experiences with chronic fatigue. 10 1/2 years ago my daughter Maddy (then age 13) got mono, which then morphed into chronic fatigue. We would like to share with you this ongoing experience. Hopefully, you will learn from our mistakes and successes and be able to help your loved one. It felt to me like we were having to invent the wheel, and it would have been nice to get someone else's experiences to build on.

(Eilene)  December 2002- After several weeks of Maddy just not feeling well, I got her into our pediatrician and found she had a sinus infection. She was put on medication, and she perked up a bit, but continued to not be herself. As the month went on, she developed an ongoing stomach ache. She would go to school and call me 3rd or 4th period to come get her, as she wasn't feeling well. We visited the doctor a couple more times, and he implied that she was faking it, that she was trying to get out of school. That really bugged me! Maddy did well in school, and I had no reason to suspect she was faking it. She really didn't feel good. Finally, in a doctor visit right before Christmas break, I took the doctor out in the hall so we could have a private conversation. I told him that she was NOT faking it, there WAS something wrong with her physically, and I wanted her to be tested for mono. (I had mono when I was a young adult and remembered well the fatigue that I had experienced. It was truly a shot in the dark because I had no other ideas to suggest.) He did test her for mono and it came back positive. This was my first experience in advocating for my daughter in this situation. It felt awkward to me because I usually tended to go with the flow. However, I was finally realizing that I knew Maddy better than the doctor and I needed to be assertive for her sake.

So now with a diagnosis, I knew what I was dealing with. She was out of school and just resting until the end of January, then the school started sending a teacher once a week for Home & Hospital. That did NOT turn out well. Having a teacher there for two hours going over a weeks worth of school work was overwhelming. And it was my introduction to brain fog. She had a very difficult time concentrating and learning, and the pressure to all that work put her into an emotional tailspin. She couldn't remember his instructions on how to do the math, she was still really tired. It was too much.

February comes, and I have two more daughters down with mono. It was ridiculous! My home was a hospital ward for sickies. The two newbies were out of school for a couple of weeks and were able to go back and limp through the end of the school year. Maddy also went back part time with the goal of working her back up to full time, but the most she was able to do reliably was get to 4th or sometimes 5th period. Maddy also was having ongoing sinus infections, which dragged her down physically.  In an effort to help the recovery/healing process, I took two of the girls to a Chinese doctor who prescribed medicinal teas. They did help to a point, but recovery for Maddy was elusive. The stomach ache was a constant. The fatigue was always there.

By the end of summer, the two other girls were 90% over the mono. Maddy was still in bad shape.  She started 9th grade, and worked hard and did her best, but she missed a bunch of school. She still had brain fog (and still does to this day) and had to learn how to work with and around that. That fall, our family planned a trip to Disneyland. My husband and I were concerned on how Maddy would do, walking all over that huge park. He came up with a great solution. We rented a wheelchair at the park, and we could push her all over. When we got to the head of the line for a ride, she'd pop up and do the ride, then back into the chair to get to the next event. She was initially reluctant to use the wheelchair. I guess she felt embarrassed or conspicuous, but it worked like a charm. And every afternoon, the three mono daughters took a long nap while dad and brother went off and did their own thing. That is the kind of thing that we started focusing on; that is, how could we as a family do the things we loved, and have Maddy with us and able to experience the joy too, in spite of her illness.

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