By Tyra on Wednesday, February 21, 2001 - 02:36 am:

I just wondered how chronic fatigue is diagnosed. Is chronic fatigue usual for people in their twenties?
My other question is how EDS effects a person when it comes to school. I am currently studying at the University and I told my doctor that I felt tired and that I found it difficult to take notes and read books (since it is hard for me to find a position where it is comfortable to sit and read, reading also gives me neck pain.)But my doctor said that studying is the ultimate thing to do when you have EDS. Is all of this really true? Is there any other student with EDS who has the same problem, and feels that EDS actually does affect you while studying?

By Gwen on Wednesday, February 21, 2001 - 12:47 pm:

Tyra, I did my degree part time, over an eight year period. Maybe this isn't appropriate for you as you but is a consideration. I made a point of chosing lectures so that I had at least an hour gap between them. Where possible I also chose courses that were internally assessed rather than had an exam at the end of the year as I find writing for any length of time difficult. I applied for extra time to do exams so I could get up and walk around, massage my hand, stretch etc.
I asked lecturers if I could either have copies of their notes or tape the lecture so I could transcribe it at leisure. Most I found were very obliging.
I found reading difficult at university because the chairs and desks are so poorly designed. If I could not take a book out of the library I would photocopy the relevant pages to read later. Also, on books. If you have to carry them make sure you use a backpack on your back, not swinging from one shoulder or held under your arm as this will cause extra strain.
I got tired but tried to overcome it by being very organised. As soon as I had an assignment topic I would immediately start my research and essay planning, even if it wasn't due for another six weeks. That way not only did I avoid the last minute rush for texts but could also work at my own pace. I also made sure that lecturers were aware that I had health problems and may have to ask for extensions, although that rarely happened.
I found my university to have a very good understanding of the needs of disabled people, whatever the degree or type of disability. There was a club for disabled students and a liaison officer. I don't know where you are but feel sure that similar support systems must be available for you.