I was supposed to be infused yesterday. Tysabri, which has helped a lot over the last couple of years and hasn't dropped me stone dead as yet, is missing in action until wednesday. The new year is always fucked medically over here, as everyone has to take a look at the living nightmare system they have to try and justify once more. Bad weather doesn't help. New blood will be a little late.
They say you can tell when you need a new infusion as you feel energy reducing. I got it in my head that I could tell a couple of days before it was time, as I was about to be wiped out. I can tell, but its not as awful as I believed. Its just the same shit I've known for decades, I prefer not to have it but I know what it is.
Its times like this I find I lose a lot of sleep. I stay up as the quiet is easier to deal with than the day. I catch up on things I may have missed. This morning I watched the first three episodes of True Detective which is excellent.
We are out of coffee filters but have the metal one, which I have used to make a rather nice cup. Of which I've drunk three. This is bad, as I can only really do one. Having said that, it kind of helps with the energy issue.
Warmish weather today, crap weather week ahoy. The pipes still haven't bust, they drip a little constantly, and live still.
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4 comments:
Hi Simon,
Without being too descriptive, I am an infusion friend who also likes to blog, mostly following crime blogs. We have an inside joke regarding the two letters BM. I live close to a little farm market and a community garden. I am certain even with our MS memory fog you know who I am. I have missed our attempts to remember the names of movies and the names of our infusion nurses, lmao :)
I found your blog today by happenstance. I have spent all of today googling info on MS and the JCV. You popped up in my search query. I bet you a piece of Werther's candy you know who I am and why I am googling info on JCV.
Hey you! (Lauren)
I'm up way too early,grinning over foggy memories of the room with the comfy chairs of doom.Sorry I''ve missed you recently, I'm back on wednesday for another round of injection fun.
I know why you are googling info on JCV. Tr
y not to stare at it you hard, furrowing your brow until your eyes bleed. Werther's candy, mmm…
Take care, send me your blog thingy so I can find it, MS Cheerleader? and I hope to see you soon.
Si.
Try not to stare at it too hard. Blimey, i'm typing like an eight year old.
That was an awesomely funny infusion day. We sat in our deluxe dentist chairs trying to remember the name of our favorite nurse. Like school children we tried to get her attention by spewing out whatever name came to our damaged brains. Behind her desk she popped up and told us to shut up! Gotta love that Judy or is it Cindy? I think we fried our brains even more trying to remember the name of the movie HellBoy. That was a movie not worth the additional damage.
Ok, I owe you a piece of candy. That is if either of us even remember. I am not sure when I will be returning to our happy slow drip suite. I have been blessed with the four key strokes JCV+...Of course I forgot to wear my protective goggles yesterday while worming around the net and my eyes are indeed bleeding.
L
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