Hello, my name is Dawn. I'm doing an essay on Chronic Fatigue Syndrome and I need to have an interview included. I hate asking people who don't even know me to help me out with this, but I don't know what else to do. I'd been thinking of interviewing myself but I doubt that the instructer would like that. If anyone decides to help me they don't need to give me any names or locations. I respect people's need for privacy. The information that I'd need is just experiences with the illness. Diagnosis, coping, that sort of thing. If you'd like to help please email me at thelorelei1980@yahoo.com I do appreciate it. I'm sorry if I've violated any privacy rules asking for this assistance. If I have, please don't hesitate to delete my post.
I would not ask for anyone to share their experiences with me without returning the favor so here are my experiences.
I was tentatively diagnosed with CFS in 1999 when I was having problems at school but was only told that it would make me more tired than normal. Very big understatement. Years later, I started to have more problems. This time at work. I nearly lost my job. I was tired all of the time, depressed that I couldn't get anything done, and I felt so very weak. I was sick often. Filing was a painful experience for me. Bending over the drawers for long periods of time could reduce me to tears. My back ached, my knees aches, I felt faint, but I did it.
I decided to do a little research into the Chronic Fatigue Syndrome. What I found shocked me. I couldn't believe that my previous doctor hadn't given me more information. I was reading stories of other people experiences and remarking, "Hey, that's me! I know what you're talking about" I really had thought that I was just lazy or just didn't want to deal with work. I have problems concentrating and my memory is horrible. Now I know why. It isn't my fault. That's a relief.
Sooo after researching, I talked to my new doctor about it. He tried to tell me that CFS doesn't really exist. He was a VERY new doctor. He also didn't want to give me tests for anything. I have no idea why. It's not like he was the one taking my blood or paying the bill. So needless to say, I started to shop around for another doctor.
I found one that specialized in this sort of thing. When I went to see her, she talked to me for a bit, examined, and then took more tests than I've ever had in my entire life. So by a series of eliminations she declared that I had CFS.
I thought that now that I had a specific name for my problems, things would be easier. WRONG! Not only do coworkers not believe in it, but my own FAMILY thinks that I'm just a lazy person looking for excuses. I'm working my butt off trying to do what a person needs to do to get by and, when I have periods of extreme fatigue, I'm met with derision from the people who should be supportive. I'm not mad at them. I understand why they don't understand me. People need proof. They need blood tests and x-rays. If someone seems fine one day, and sleeps until 3 the next, people are skeptical.
So now I'm in college, working towards a degree in Graphic Design and I'm near tears every other day. A two page essay that is no problem for some of the other students is hell for me (this post is now 2 hours in the making). I'm either too tired to get to my computer or if I do manage to get there it takes me hours to type one paragraph. I miss early classes because I'm either sleeping or sick. I'm afraid to tell my instructers what the problem is because I'm afraid of seeing the derision and disbelief in their eyes as I've seen in the eyes of people that I love.
I decided to do my research essay on this topic because I want people to understand. If my instructer knows nothing of CFS, I want to TEACH her. I am NOT a lazy unmotivated jerk. The fact that I'm forcing myself to go back to school after 4 years should prove that.
Even if I'm incapable of affecting my instructer on this issue, the whole research paper is good for me. I'm finding more information than I've ever found before. I'm reading about other people's experiences which makes me feel less alone than I did before.
Even if I can't find someone to interview from this post, it's been a great therapy session talking about my experiences. I can't talk to the people close to me because they just don't understand. They accuse me of complaining too much. Perhaps I do, but I can't go through life with a smile on my face pretending that I'm okay. I'm not okay. I'm scared. There is no one who understands what I'm going through in my life. I feel so alone sometimes. I'm glad that there's a message board like this.
Thank you for listening to my entirely too long rant. I didn't mean to make it as long as all of that. I just couldn't seem to stop once i had begun and it all came pouring out. I hope that you understand.