Tuesday, February 22, 2005

Night and Day 

Not a day goes by that I don't experience fatigue to some degree. It can vary from day to day or week to week but it's always there. At certain times of the day it is noticeably worse, usually by 11:30 a.m. it starts to set in and peaks by 2:00 p.m.. By 5:00 or 6:00 p.m. it subsides a bit. I always hesitate when a friend asks me how I'm doing. Do I tell the truth?..."I'm tired, I can barely stand up. I'm incapable of stringing words together to form a complete a sentence. Who are you?" or should I just say "I'm fine." like everyone else. I think I should go with "I'm fine." I still get frustrated because secretly I hold the same standards for myself as a "normal" person. Why can't I clean my house, go shopping and then go dancing in the same day? Anybody else can.

I have a symptom that's starting to change and get worse. I've noticed that if I stand for too long my toes start to feel strange. First they get that electric pins and needles feeling and even if I change positions or walk around they hurt but in a weird way. It's difficult to describe it but the only way to deal with it is to sit down (or crawl on my hands and knees but I think it would look suspicious in a department store.)

Xantia, I have read your messages with interest. You have a very good style in descriptive writing about your experience with the new medication Tysabri. I empathise with your ups and downs with Tysabri as a new medication. I would urge you to continue your articles and continue to express how Tysabri is working for you. As a new medication, any information you can dispense to the public can only help to understand how Tysabri can affect one person, where others might find similaritys which you can share. Best wishes, looking forward to your furter contributions
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