In October 2008 I was diagnosed with relapsing/remitting multiple sclerosis after a series of three overlapping attacks earlier that summer. I was “lucky” because my initial MRI showed “textbook perfect presentation” of the plaques in my head (“Doctor, what’s that golf-ball looking thing doing at the bottom of my brain?”) so I didn’t need a spinal tap or any other really invasive procedures for an official diagnosis. Luckily, my diagnosing physician gave me the opportunity to become involved in a stage 2 clinical trial for a drug called Ocrilizumab, so I’ve never been on a beta-blocker like Avonex or any other self-injectable. My medical treatment has consisted of full-day infusions with steroids and the trial drug, once every 6 months for 2 years, and now I’m in an observation phase. I haven’t had a major attack since starting treatment! Woohoo! I am very blessed to have almost no physical symptoms, except for ongoing fatigue, some minor balance issues, and a dull patch of skin on my right outer thigh. I am fully aware of how lucky I am, but I still struggle to get through what used to be a normal day sometimes. The only real issue I still have is what I call “my dumb days” which my Neurologist tells me is a migraine, but I find it mightly suspicious that I’ve never had migraines before. On those days I can’t track information, it’s really difficult to concentrate, and nothing much actually makes it into my short term memory. Frustrating!
Fatigue is a very common and insidious symptom, since it’s not usually physically apparent. I’m not in a wheelchair or using a cane, so it can be challenging to help other people understand that I’m not always able to perform at 100% all the time. Or sometimes even 80%. It’s frustrating because I’m somewhat of a perfectionist and I’m very task-oriented, so doing a good job is very important to me. I realized pretty early that I needed a new way to look at my life, my tasks, and how I go about doing what I do on a daily basis. It’s led me to some choices and compromises, but I feel pretty good about where I am now! I’d love to help you get to a similar place!
So what have you done to cope? Is there something that’s worked really well for you? Do you have a favorite piece of music, or an affirmation that you go back to, or anything else that just makes it easier to get through the day or night?
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