Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Friday, March 30, 2012

I'm so tired.

Who knew there was a song - a Beatles song, at that - that had the perfect title for how I'm feeling right now?

The day-to-day drudgery that is Charlie's schedule is getting to me today. I didn't even have anything else do to - its not like I wanted to go out and couldn't because of a barf or a nap. I'm just realizing, slowly, how long a battle this is going to be.

Charlie (and thus, I) spend 4 hours a day, minimum, 'on the drip' (his NG tube/ gravity set). We sit from 6-7am, 10-11am, 2-3pm and 6-7pm). Then, I sit, alone with my iPad, from 10-11:30pm, dripping in the final feed. This time does not include getting his solids into him three times per day, right before these structured feeding times. I have been doing this with Charlie since August. Every. Single. Day. I make an effort to get out of the house from 3-4:30pm, because we have to be home by 5pm for medication. I like structure and I know it's good for Charlie, but this is definitely too much of a good thing.

Lately, and I don't know if I'm getting sick or what, but I have just been so frustrated with...everything. I have a smidge of a sore throat and I'm finding it really difficult to wake up from my morning nap. I'm feeling run down and a bit sad again, and I don't know why. Charlie is progressing well, walking and moving around, and usually happy. I really think I am just tired. Soul-tired.

Today was not a great day. Charlie is recovering from his vaccines last week, and the MMR shot has affected both his mood and his ability to keep food down this week. Today, he threw up half of his morning feed, and then his solids at 2pm (fairly rare for him to throw up solids). Then, he would have kept down his 2pm bottle, but he decided a navy blue thread on the carpet looked delicious, and so in his mouth it went. Of course, this elicited a barf. I was so mad. The rest of the day was fine, but I really don't think Matt can understand how tired I actually am, all he time. I am hoping tomorrow is a better day.

It'll have to be a better day, because I get a night out! I am going out with my sister-in-law tomorrow night to see Gotye. If you haven't heard this song yet, give 'er a go. It's great. We get to have dinner out too! There is nothing I like better then dinner downtown at a brewery. :) I intend on imbibing a little. I am being driven home.

If we look at the positives today, it could have been worse. We switched out Charlie's tube, which becomes better every time. He did keep down more then he was before we altered his feeding amounts (rather then doing 5x175 mLs, we now do various amounts depending on the time of day - less in the morning, more at night). He was in an ok mood for most of the day. Super chatty.

That said, I honestly hope he's an asshole tomorrow night while I am out. It is so unfair that I get all the bad moods. ;)

I'm so tired - The Beatles

I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink
I wonder, should I get up and fix myself a drink?
No no no

I'm so tired, I don't know what to do
I'm so tired, my mind is set on you
I wonder, should I call you? But I know what you would do

You'd say I'm putting you on, but it's no joke
It's doing me harm, you know I can't sleep
I can't stop my brain, you know it's three weeks
I'm going insane

You know I'd give you everything I've got
For a little peace of mind

I'm so tired, I'm feeling so upset
Although I'm so tired, I'll have another cigarette
And curse Sir Walter Raleigh
He was such a stupid get

You'd say I'm putting you on, but it's no joke
It's doing me harm, you know I can't sleep
I can't stop my brain, you know it's three weeks
I'm going insane

You know I'd give you everything I've got
For a little peace of mind
I'll give you everything I've got
For a little peace of mind
I'll give you everything I've got
For a little peace of mind

1 comment:

  1. Oh, how I feel for you. I don't have half the things you have to deal with on a daily basis, but I remember the feeding tube, the gravity feeds, etc. and how time consuming and just plain annoying they could be. I also think that part of the exhaustion is just the constant feeling of CONCERN...its not just all the doing, its all the FEELING...so, big cyber hug to you. I can't make it better or make it go away, but I totally get it. Have fun tomorrow...you earn it every hour of every day!

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