When I was on the Rebif, I generally would get 6.5-8 hours of sleep on work nights, and would "catch-up" on the weekends, sleeping 9-10 hours a night (alright some times 12 hours). So, I was used to what is was like to have fewer hours in a day to get things done because of sleep- but it wasn't every day. When you are compelled to sleep for 12 hours a day, every day, it is really hard to get things done!
Also, the absent-mindedness makes it accomplishing anything almost impossible. I have to write a list every day, all through the day of things that I need to do in order to remember to do them. I'm not just talking about things like "buy toilet paper and milk" but things like "check to make sure you put eye make-up on both of your eyes" and "are your keys in your hand? if not please don't lock the door". Seriously. I locked myself out of my apartment three times in one day. I had to get a spare key from the apartment management THREE TIMES IN ONE MORNING! And all I was doing was trying to get to work. Going back for the key the third time- so embarrassing. The office staff must have thought I was on drugs.
Also, the absent-mindedness makes it accomplishing anything almost impossible. I have to write a list every day, all through the day of things that I need to do in order to remember to do them. I'm not just talking about things like "buy toilet paper and milk" but things like "check to make sure you put eye make-up on both of your eyes" and "are your keys in your hand? if not please don't lock the door". Seriously. I locked myself out of my apartment three times in one day. I had to get a spare key from the apartment management THREE TIMES IN ONE MORNING! And all I was doing was trying to get to work. Going back for the key the third time- so embarrassing. The office staff must have thought I was on drugs.
Impressions: Even though I have been sleeping so much, I do feel better overall on the Gilenya, comparatively. I wouldn't call it a miracle-drug, because, well, I don't think my life-style has changed significantly for the better. I am jealous of people in the support groups who say that Gilenya hasn't given them any negative side effects, but I think that they are the minority. I have asked a few questions on the support group boards, mostly how long I can expect to feel so sleepy, and people seem to understand what I am going through, as if it is a short term thing.
Side-effects:
Fatigue: It's bad, but it isn't like my normal M.S. fatigue which can come and go and has an emotional part to it. I almost want to call it Sleepiness, because it really is just a need to sleep, and not both physical and emotional exhaustion. When I get hit with a wave of M.S. fatigue, it's like hitting a wall, but not just any wall, a wall that is 10000000 miles long and 10000000 miles high and so thick and sturdy it is impossible to even think about getting past and impossible to see through, but yet you can hear all your friends on the other side having fun and achieving their life dreams without you which makes it that much more unconquerable.
Now I realize, I've not hit the M.S. fatigue-wall at all since I started the Gilenya. Wow! Good thing I'm writing this stuff down, or I might not have realized that!
Short-term memory loss: Again, it's bad. But, I have learned that if I keep a notebook with me at all times, I can deal with it. The hard thing is remembering to keep the notebook with me at all times.
Headache: Has gone away! Woo Hoo!
Lower back pain: I have been feeling this on-again and off-again. I probably wouldn't have noticed it, but someone on one of the support groups mentioned that it felt like she had been sitting in a too-hard chair all the time, and I realized that I was feeling the same.
Vivid dreams: Crazy vivid dreams. Every night. These dreams seem very real, but they aren't nightmares. The worst one was that my brother and sister-in-law had renamed my oldest niece "Emmalina" (but they were going to just call her "Lina" instead because "Emmalina" was too long for everyday) and I suddenly had to introduce this niece to all these people who should have known her name already (including my recently deceased grandfather) and I couldn't remember her new name. I was so frustrated with my brother when I finally woke up. (Love you, Justin!)
Side-effects:
Fatigue: It's bad, but it isn't like my normal M.S. fatigue which can come and go and has an emotional part to it. I almost want to call it Sleepiness, because it really is just a need to sleep, and not both physical and emotional exhaustion. When I get hit with a wave of M.S. fatigue, it's like hitting a wall, but not just any wall, a wall that is 10000000 miles long and 10000000 miles high and so thick and sturdy it is impossible to even think about getting past and impossible to see through, but yet you can hear all your friends on the other side having fun and achieving their life dreams without you which makes it that much more unconquerable.
Now I realize, I've not hit the M.S. fatigue-wall at all since I started the Gilenya. Wow! Good thing I'm writing this stuff down, or I might not have realized that!
Short-term memory loss: Again, it's bad. But, I have learned that if I keep a notebook with me at all times, I can deal with it. The hard thing is remembering to keep the notebook with me at all times.
Headache: Has gone away! Woo Hoo!
Lower back pain: I have been feeling this on-again and off-again. I probably wouldn't have noticed it, but someone on one of the support groups mentioned that it felt like she had been sitting in a too-hard chair all the time, and I realized that I was feeling the same.
Vivid dreams: Crazy vivid dreams. Every night. These dreams seem very real, but they aren't nightmares. The worst one was that my brother and sister-in-law had renamed my oldest niece "Emmalina" (but they were going to just call her "Lina" instead because "Emmalina" was too long for everyday) and I suddenly had to introduce this niece to all these people who should have known her name already (including my recently deceased grandfather) and I couldn't remember her new name. I was so frustrated with my brother when I finally woke up. (Love you, Justin!)
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