In 1996 I was in the seventh grade and things looked real good. In April of that year I had to have surgery. After that things started changing for me. In May I started having ankle and wrist problems. The doc said if I lost weight things would get better. In June and July I started feeling even worse. I lived at the docs office. I then was diagnosed with something and had to have surgery again. That was in October.......that was when my life changed.
I did good through the surgery and even got to leave the hospital a da early. I was so exicited that I was going to be better and was really looking forward to going back to school. The week before I was to go back to school, I felt real wierd. I was real dizzy and fatigued. I went to the doctor. He said that I had vertigo and gave me some pills. He also drew blood to check on everything. The tests came back that I had mono. The doc said it would take six weeks for me to get better. That was on November 4, 1996.
In December I still wasn't well. I was sent to a specialist and he said that it was still the mono and it would take longer for me to get better. Feburary came and I still wasn't better. I couldn't handle that I wasn't in school. I tried to go back but it was a worthless cause. I was to tired to think straight. After three half days, I didn't go back. I figured that I would wait for the mono to leave. The mono titers still came back extremly high. I decided that I would just wait.
In April I had a bad kidney infection that landed me in the emergency room. I met a doctor there and she said that she could help me out. Three weeks after that I saw her in the office for the first time. She seemed real concerned and I just knew she could help. In May I started losing a lot of weight. I would lose like 5 pounds a week. That got her concerned, but I was a little overweight so it wasn't to bad in the begining. The thing was I got sick when I tried to eat.
I will never forget this day as long as I live. On July 7, 1997 I was placed in the hospital. My weight had droped too low. They said it was for a calorie count, but little did I know it was for a psych consult. I told the docs that I was tired all the time and that I got sick when I ate. They didn't believe me. They said that it was all in my head and that I was making myself this way. I hated that doctor after that meeting. I left my mom in with the doctors went and packed my bags and left that day. I saw the doc once more. She saw that the psych counseling wasn't working and told me she didn't want to see me anymore because she couldn't find out what was wrong.
Whenever I metioned CFS all the docs said it wasn't a real diease. I had never heard of it. My doctor told me in October that I might have it. Finally in August of '97 I got the help I needed. I went back to my regular doc and just broke down in front of him. I had my physical therapist there cause she knew of this and really thought I had it. I knew I couldn't goto school, I knew there was something wrong with my stomach, and I didn't know what to do. My doctor finally told me that he didn't know what was wrong but he would do anything to get me better. He sent me to a nuerologist and a GI.
The GI found out that I have a gallbladder problem. That was causing my weightloss. I had surgery that October to correct that problem. In April of '98 the nuerologist said after all his test he couldn't find a medical reason for all of this and sent me to a peds nuerologist. I saw him in May. The peds doc told me that I might have NMH, and he wanted me to see a docotor at Duke University. She told me that I have FMS which is CFS's twin diease. I also found out that I do have NMH. This doc has helped me and I hope to get into treatment soon.
That was how it happend. I suffer from all three of those things. School has been a big problem for me. I am not physically able to go because you never know how you are going to feel from one day to the next. I have been trying to get a tutor so that I can keep up my A average. The school system doesn't know much about this problem and just wants me to come to school. Luckily in February of 1999, a new school was opened up in Stokes County. The name of the school is Meadowbrook School. With the prgrams that they have there I only have to go for three hours everyday. If I can't go everyday, it isn't a problem. You work at your own pace. So far I am going at a good pace. They said if I keep up my good work that I will graduate next year. I'm really excitied about that. I hope to continue on this path of healing and head off to college.
The main CFS symtoms I suffer from are: fatigue, impairment of short term memory and concentration, sore throat, muscle pain, multi-joint pain, headaches and unrefreshing sleep. I also suffer from symptoms that CFS makes real bad. They are: chills, night sweats, anxiety, dizziness, sensititvity to light, heat, cold, chemicals, and medications, irritable bowel, low grade fever, numbness and tingling in my extremites, PMS, chest pain and rahes. The FMS causes me to be in pain alot of the time esp. in my upper body.
People with CFS really want to be normal. They want to go and do like they used to. Most people who get this have had pretty normal lives and were very active before getting this. YPWC's want to be accepted for who they are and not be treated any different. We want to go to school, have friends, and be loved. When you have CFS, you feel isolated, like you haven't gotten a friend in the world. You truly long for someone to understand and treat you right. Here is a passage from "Till Death Do Us Part" by Lurlene McDaniel.
She shook her head.
"While your body is tied up with sickness, your mind and feelings aren't. You still want the same things that 'regular' people have. You still want to be liked. You still want friends and to be invited places, and when your older, to ask a girl out and not have her act all embarrassed...or worse, horrified. Althrough highschool I wanted to date. I wanted to kiss a girl. I wanted to have a girlfriend. Look at me: I am twenty-one years old and I've never heard a girl tell me 'I love you'."
She didn't know what to say. His pain was real.
"There were times when I realized that I could live with CF-if I only didn't have to live with my feelings. Why couldn't CF taken my emotions away, instead of my breath?"
That makes alot of sense to YPWC's. Why did CFS take away our energy instead of our emotions? I truly feel that way.
CFS/FMS/NMH are hard things to live with. I only hope that I will come out of this as a better person. I have learned that I can handle anything. With my friends online and the help of my family I know I will overcome this. I only hope that I can help others not go through the pain that I have.