Tag Archives: Multiple Sclerosis

Back on Gilenya… again

I’m so incredibly tired and sleepy tonight. I started back on my Gilenya today and am wondering if it’s making me more sleepy.

I have been off of it for the past 10 days. I had developed a bad cough, and they weren’t sure if it was a side-effect of the Gilenya or a remnant cough from my illness. The cough finally went away over this past week, and now I am back on the med.

Hopefully, the cough stays away, else I will have to go off Gilenya permanently.
Back at Christmas time I was off of it for 4 days because I was sick and then went back on until this latest break.

The chronically fatigued insomniac

I AM that oxymoron: the chronically fatigued insomniac.

One thing, which I know would probably make me healthier and feel better, would be for me to go to bed at a decent hour. Not to mention I have heard rumors that a solid 8-9 hours of sleep helps prevent you from aging. Being as that I am hitting the half way mark between 30 and 40 in January, and I am beginning to see gravity and life slowly affect my outward appearance. Also, my inner soul is starting to tire.

I have always been a night-owl, but my youth and graduate studies tended to keep me from needing more than 4-6 hours of sleep a night. I did fine with nights of no or little sleep before the age of 25, and then it rolled over to having two boys in a span of 20 months, which precipitated the “lack of sleep” issue. Again, I did ok with that.

And now, I have two darling boys that go to bed without complaints at 8pm, no questions asked. I truly am lucky and blessed that they welcome bedtime as easily as they do. I wonder if when this perfection will end.

I, however, stay up for hours after they’ve gone to bed. Sometimes I am doing useful things, like getting clothes ready for the next day of school, making lunches, loading the dishwasher, and folding a load of laundry. Often though I get sucked into my DVR that I only watch at night because my boys, including my husband, are soundly asleep in bed and they really have no interest in watching Project Runway or Top Chef.

My question is if anyone out there sets a curfew for themselves?

I am usually asleep by 1am. Everyday when I wake up exhausted from lack of sleep, I tell myself that I will go to bed earlier today, and I never do. The few times I have tried, I have failed miserably. I lay in bed wide awake with my mind racing a million miles a minute. I am on a first name basis with Melatonin and Ambien right now.

MS is a funny (as in perplexing) disease. It’s as though I cannot fall asleep at night, then I wake up exhausted in the morning, trudge through the day like a zombie, have to sit down every few minutes because my body fatigues so easily, then cannot fall asleep to take a nap when given the opportunity, and am so fatigued until the cycle repeats itself.