Wednesday, July 31, 2013

From the Sickly Side.....

Hi, everyone, it is Maddy here. From my point of view, it was a little different.

I remember before I got sick, I loved playing soccer, going to school (and doing well), and I liked being very active on a regular basis. I remember when I started feeling sick, I felt like I didn't want to do anything. When the stomach aches started, eating made them worse so eating was its own battle. I was really disappointed when I went to Thanksgiving at a relatives' house with my family and I could barely eat and keep down some mashed potatoes. As time went on and I kept getting sicker and sicker, things get fuzzier or they don't exist that much. I remember how hard it was to get out of bed to go to school, something I hadn't had many problems with before. I remember going to school and hearing sound come out of teacher's mouths but not understanding a word they said. School assignments that used to be a breeze become too hard to do. I would try so hard to follow along, and it was beyond my ability to pay attention and learn.

To help with picturing me, I went to sleep in 1st period one day because I literally could not stay awake- and then the teacher managed to wake me up 3-4 hours later-- I had not stirred to one single bell that rang, didn't lift my head when peers were coming and going, it just went completely black for that period of time. The teacher had watched me go from being an A student to acting like a zombie in short order, so he wasn't freaking out when I fell asleep in his class. Granted, I don't think that this nap kept me in school for the whole day- I think I still ended up calling my Mom to come pick me up.

I remember going to the doctor many times- for the stomach aches he told me to take antacids but they didn't help at all. I remember the pure relief when right before Christmas vacation we got the test results back and the word that I had mono-- because then he wouldn't be telling me that I was making everything up.
July 31, 2013

Educating Coach B

In the spring of Maddy's 9th grade year, she was feeling a bit better and wanted to take gym. I was skeptical because that seemed a big step considering how fatigued she'd been. But we changed her schedule to include a gym class.

Before letting her attend, I talked to Coach B so he wouldn't expect her to perform as a normal 14 year girl could. (I still was under the impression that Maddy had mono at this point.) So I talked to him, gave him some parameters and let things unfold. A few days later Maddy reported that he had been pushing her to run and she couldn't do what he wanted. So I made another appointment with Coach B. I got him on his lunch break, and we sat in the faculty room while I tried again to explain her limitations.  What I asked him to do was to let her do things her own way. If he wanted the class to run, and she walked, good. If she could only walk for 5 minutes, good. If she just needed to sit that day, good. It was obvious this approach was very different than what he was used to, and he was struggling on how this would all work out. I told him that Maddy wanted to be in the class, and she would do what she was able. So I left and crossed my fingers.

A couple of weeks passed, and Maddy's comments clued me in on what was happening. Coach B had obviously been watching her, and was starting to pick up on her body language, and gauging what she might be capable of that day. One of the quirks that had developed over the previous year was what we called Maddy's mono walk, or mono shuffle. The more fatigued she was, the more pronounced it became. It was a strange 'walk from the hips with straight legs' movement. (It's hard to describe but very distinctive, I assure you.) Coach B was keying on that walk and would invite her to sit that day if he perceived that she was struggling. I was so pleased! It really gave me hope that people cared. This also took pressure off of Maddy. She knew whatever she could do in gym was acceptable, and having the supportive attitude of the coach was wonderful.

For a regular kid in middle school, having a helicopter parent is not a good thing. But with a kid with a chronic illness, having an ADVOCATE is crucial. Kids have no power to negotiate anything in middle school and much of high school. It takes a parent and hopefully medical backup to put parameters in place to allow that kid to survive and maybe to thrive. And over time, as that kid matures, they learn to be their own advocate.
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.