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These diseases, and most of all CFIDS, have a great impact on my life. I have lost my job, all my friends and even my family. I have always been very active, I did sports en worked as a secretary. One day I had to give up everything due to my illness(es). Those who stayed (my parents and mother and father in law to be) understand my situation and know that I never would stop working and doing sports if it wasn’t necessary. Through this disease I have learned to know my ‘friends’, eventually almost all your friends will let you down. The friends who stay are your real friends, honour them. It’s okay to put energy in your relationships, but when they really don’t understand you then stop this relationship; it costs you a lot of energy and frustration and they are not worth it.
I am lucky that my boyfriend takes care of me, otherwise I had to stay in a nursing home since July 1998.

About FM I can’t tell you much, because both diseases started at the same time. With both diseases you are tired, you have muscle pain and joint pain. So it's hard to know which symptom is from what disease, but I can tell you that due to FM I have more pain and stiffness in my joints when it rains and especially my fingers are very swollen.

What is a normal day for me:
When I am awake I get washed on bed, then I try to brush my teeth with the electric toothbrush. The rest of the day I try to read my email bit by bit and sometimes I can even write an email. Since a few weeks I have a laptop so I can read and write my email while lying on bed, this is also how I made my website. Before I had a laptop my boyfriend printed out the emails for me. If possible I watch a bit TV or call a friend. My boyfriend usually needs to feed me, because otherwise my arms stop working before I have enough.

Once a month I can take a bath if my boyfriend lifts me in and out bath. Then I have to rest so I can take a bath again next month. Taking a bath is for me the highlight of the month, I really life towards it. I hope that when I have the stair elevator I can take more often a bath. When I have the stair elevator I hope that my boyfriend and I can sleep together again upstairs in our bed, now I sleep alone in the living room in a hospital bed.

I have tried to keep a sleep rhythm, but this is not possible for me, because I often can open my eyes only for 3 hours a day usually from 20.00 till 23.00 hours, this during a period of 2 – 4 weeks. This is not the same as the 3 months I wrote about on the previous pages. In those few weeks I still can move, but my body is actually too tired, I also still can talk a bit. In those 3 months this wasn’t possible because I was fully paralyzed.

A long day for me is to be awake for 10 hours, including the rest hours in between. i try to avoid real sleep during the day, because I then always wake up feeling even more sick... it really feels as if I die, that's how bad I feel.

Written somewhere in 2000 at the beginning of my first website.

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