I have always been a great napper. I could pretty much take a nap within an hour of waking up because my fatigue is so pervasive. If napping was an Olympic event, I could definitely represent for the US and maybe even medal! Last night, however, I didn't sleep well.
I guess it must be the Tysabri infusion doing it to me.
I've had IV Solumedrol and I know how to hook up an IV with meds and flush the lines. Heck, I have worked teaching and hooked up to an IV pole, dragging it around the room. As a complete aside, not all IV poles are created equal. If you get a "bad" one you know it. The last one I had kept twirling itself around, maniacally ramming me in my sandaled feet. Ouch.
I've taken Copaxone for almost the first two years of my diagnosis which meant daily shots. My first shot was on Christmas Eve, alone in my apartment, but I just wanted to get it started. Then I later took Rebif for my thrice-weekly torture pricks that make you feel like dried dung in an African desert.
But this one measly infusion kept me awake until almost midnight and then it had the gall to keep me tossing and turning when I finally could get to sleep.
I feel as if there is so much riding on this one medication. Will it make me better? Will it slow down my multiple sclerosis? Will I have an allergic reaction to it? What will I feel like later on? What will I feel like today while I'm there and then after when I come home?
Oh my good golly, too much for me to be thinking about here. It's one medication but I am hoping for a miracle. Is it too much to ask for my life back?
Can I follow through on tasks that I started? Can I deal with the heat of late spring and summer like a normal person instead of having to hide inside like a vampire, minus the cool cape and the blood-drinking thing? Will I be able to walk a reasonable distance, say from my room to the teachers' room, without limping and spasming like a cowboy who has been riding his horse for far too long ? Can I think clearly again? Will I stop living in this pit of depression where everything in life overwhelms me?
Look at me asking for all of these things to make my life better. How selfish can one person be while enjoying the slow spin on this third rock from the sun? As selfish as she wants to be, I reckon.
If you happen to be reading this and you're of the prayerful sort, I wouldn't mind someone throwing up some positive vibes for me around 1:30 this afternoon. Maybe I'll sleep better tonight.
1 comment:
I just started having a coffee at 1 PM again to keep me going through my last two hours on air. On weekends I have a tendency to nap at 11 AM, after having been up for 4 hours or 4 minutes.
I call myself the Queen of Naps. I will send good vibes your way at 1 this afternoon when I'm nuking my coffee....
s.
Post a Comment