Saturday, September 21, 2019

Being Super Honest About My Day Today

Today is Friday, September 20th. And I am exhausted. It's easy to think from everything online that everyone gets up at 5:00 a.m. and has an amazing morning routine and is on top of everything all day. But that's crap. I don't think anyone is ever "perfect" all the time.

I don't actually like saying what time I get up because our society often judges people by what time they get up for the day. Without even knowing the story behind why. I have cystinosis, which leads to many secondary conditions and symptoms, although it effects us all differently. I have chronic fatigue, insomnia, chronic nausea, chronic dehydration, persistent vomiting, headaches. I get up to use the bathroom probably 5-6 times per night. I have to get up to take medication three times through the night. I'm also hooked up to a Kangaroo feeding pump during the night. (I have a G-Tube in my stomach and get hooked up through that.) Which is very uncomfortable and is not conducive to a good night's sleep, on top of everything else. Plus, I have anxiety and OCD and often, if you have these, you wake up more tired than you went to sleep. Not to be a downer, but my sleep has been screwed six ways from Sunday for my entire life.

Kangaroo Pump - image from Google

So, what's the point of this? To explain why I get up between 10:00 and 10:30 in the morning, usually. Part of it yes, is that I feel like I need to explain it. But it's also because I feel like people should know because people tend to make snap judgments without knowing someone's story and situation.

I also have very weird sleep patterns, which you may have already picked up on. Usually by about 8:30-9:00 in the morning I can finally unhook from feeding pump. It's my "I'm free!!" moment. And my only good sleep is during that hour and a half to two hours that I'm hooked up to my feeding pump. I freaking live for those two hours of that sleep. Anyway, today I was up from 8:20-11:30 in the morning and then I fell back to sleep until almost 1:00. Then I was dragging for quite a while. It took me a while to get dressed and ready and make my bed (it always makes me feel more put together.) Then it was 3:00 and I had to eat. I was eating by 3:30, done by a little before 4:00 and came into my office to write this blog post. After this, I'm going to go live on Instagram for a little bit to talk about Begin Again. After that, I''m most likely going to sit on my couch. I might do some work, I might not. We'll see what happens. Because I am STILL so tired. I'm almost done with Begin Again and will work on it this weekend but today has just been a day my body needed me to take it easy.

I suppose this is a little insight into my day working from home with a chronic illness. You can still do the things you want, you just may have to modify the "usual" path and may not get there as quickly. Doesn't mean that you can't do it. What's that saying? "You can do it all, but you can't do it all at once."? Did any of this resonate with you? Do you have a chronic illness that effects your day to day life?

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