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September 17, 2014

A Day in the Life: Spoonie Edition

You've probably gathered by now that a typical day in the life of Kacie is very out of the norm. Not sure you want to know just how out of the norm it is, but for this Wellness Wednesday I'm giving you a glimpse anyway!

I've read a few day in the life posts, and none of them sound even similar to mine, of course, since this is a spoonie we're talking about. So here we go--get ready for lots of excitement...


1:48PM

 

Yes, you read right: on this particular day, my day begins at 1:48--that's PM--after waking up about half an hour earlier.  I actually went to sleep about 4 AM, so this time frame is to be celebrated. My sleep is all over the place, but very recently has been starting anywhere from 7-10 AM and gone until 7-8 PM, so this was awesome.

When I wake up, I always have to lay in bed for a good half hour because I am so achy and sore everywhere, particularly in my limbs, so I give both my brain and body time to wake up a little. Of course I lay there on my iPhone the whole time. As I mentioned in this post on Saturday, when I wake up, I feel all kinds of pleasant, including a lovely kind of vibrating and also either like I've been running all night or that the Hulk has taken me by the feet and bashed me back and forth against the ground--you know, Loki style.

I gradually awaken to all the things that hurt as I lay there. On this "morning" in particular,  I do feel the above described pain, then I also realize that my throat hurts--hoping that it's just from the air and a fan being on and not an indication that I'm getting sick yet again--my stomach/gut area is not happy, and my now-daily migraine is beginning, all of which is the usual anymore.

2:30

By this point, I'm up, teeth brushed, supplement for my MTHFR gene mutation rubbed on my foot, and I have successfully put up the dishes in the drainer. (Yes, we wash dishes ourselves around here.)


It's a shower day (you don't take a shower every day, do you?), and I also need to make french toast sticks. So, Pandora in the background, as usual, I get those whipped up and put in the oven and then take a quick shower while they bake (they take a while).

The first song Pandora chooses to play on "Demi Lovato radio." Whatever, Pandora, I like this too.

I get done with my shower without having to lay down after and, likely fueled a bit by the knowledge that I'd be sharing this day with you, I decide to be an overachiever and put up the laundry that Daniel washed and folded the day before. 

Finally the French Toast is ready, so I whip up a McGriddle and eat while catching up on blogs and Twitter and such. {I always have to multitask, even though fibro fog doesn't lend itself well to that.}

This meal never photographs as deliciously as it actually is. Btw, I made it with yet another different kind of flour this time, and it turned out differently yet again.

Once I finish eating, I'm pretty much stuck in the lazy-boy in the family room, having pretty well used up my spoons by now, and do random tasks on the computer, like listing a new item in my new Etsy shop.


5:00

By 5 I'm really running down and debate laying down, though I'm not sure my brain would let me fall asleep. So instead I just bundle up on the lazy-boy, right before Daniel gets home from work.

I will never get tired of this window. {It's right next to where I live in the family room.}

I do finally lay down for a bit and then decide to try putting up this insufferable wall decoration that turned out to be a lot harder than it should be. {Just fyi, it's impossible to make it look like the picture, so you're doomed to your own attempt at a design. Which is a lot harder than designing on the computer.}


I give up on the wall thing for today and, since I'm not hungry, make Daniel dinner.

8:45

I call my Mom for a bit, then talk to Daniel for a while until he goes to bed. (He goes to bed like a normal person.)

11:00

Miraculously, I'm both tired and sleepy enough to go to bed at 11. So my short though accomplished 9-hour day is over. {I actually ended up sleeping only about four hours, and then I was up. Very typical.}

The times that these things I've listed take place are all over the place for me but tend to go in cycles based on what my sleep is doing. But typically I'm up until at least 3 AM, which is the time that I normally work on my blog, Katya Valera tasks, and KV Designs tasks. The daytime--however much of it I get to see--is for any cleaning and cooking that I can manage to do (which is often none), and then evenings before Daniel goes to bed are for watching TV with him or talking.

Pretty mundane day, huh? Most people's day in the life posts wouldn't need photographic proof of things like the mound of dishes they put away. But these mundane tasks that I got done are huge for me. Putting up dishes, taking a shower, baking, and making my husband dinner are things that are just regular daily tasks for anyone else but things that often are impossible for me and that, when accomplished, make both me and Daniel feel like I'm superwoman.

So there you have it. An exciting, typical day in the life of a spoonie!

You can read more about life with a chronic illness in this post:
http://katyavalerajewelry.blogspot.com/2014/09/my-30-things-invisible-illness-week.html 


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2 comments:

  1. I always find these "day in the life" posts so interesting! I wish so badly that I could just snap my fingers and your pain would be gone but even just from reading this, I am reminded of how strong and positive you are, despite what might be going on. And that french toast/mcgriddle thing looks SO, so good!

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  2. Ahh my sleep schedule is so messed up right now, too. I was doing ok for a little bit, when I was getting regular exercise, but now I'm up until 2, wake up every few hours, etc. It really drives me more insane than some of my pain. I can't nap at all. I used to just have trouble falling asleep, but I could stay asleep. Now I can't sleep, and I just get more agitated every day :(

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