What my day looks like

June 2020

I don't know how much longer I can handle this pain, hurt and so-called life?

I use to be able to work, have money for things I wanted, walk for miles, dance in my kitchen, workout, stand for hours @blueoctoberband Concerts, have girls night out with my friends, plan amazing trips with the husband, Not be so obsessed with how I look, feel beautiful, sexy and wanted. And so much more,

Someone asked me to do a post on what my day consists of so I thought why not.. Trust me it's nothing to fun or fun at all.
Let's get into it.
6-7 a..m *

my days are waking up after only 2 hrs of sleep. Unfortunately feeling pain and Nausea, my legs don't move right away so I'm barely able to make it to the bathroom.
After that I'm exhausted and out of breath so Back in bed I go. I try to eat crackers or something to help with nausea and to take my meds. (Praying that they will work,) I will wake up Mayson and make sure he gets off to school. But after that going back to sleep is my goal, sometimes it works and sometimes I'm wide awake.

3-4p.m*
Waking up because of pain, and freezing, sweating, and high fever, the younger kids are home so I try to eat some more to take next round of meds. This is the time I struggle with and usually break down
Being in pain and barely managing it all, working on trying to get up and move but being so weak I end up back in bed, Crying myself to sleep.

5-6ish*
Trying to eat dinner without feeling nausea which I can't handle either, I'm usually alone in my bedroom or if I'm lucky downstairs with my family. After dinner, I take my meds again. I will try to clean up the kitchen if possible or fold laundry. Maybe watch TV with Lonnie. My days are spent just trying to get out of bed and do something. This takes every bit of energy I have and I usually end up back in bed.

11-3a.m
when everyone is asleep, I'm wide awake. because I slept all day. Now I'm lying in bed because I can't do anything. I Watch movies, YouTube, anything to get my mind off the pain but then it brings it right back home with what I can't do or buy or have. So I'm sad.
I try to make a list of the things I'm grateful for. Sometimes it works and sometimes it doesn't. Finally, my body says enough and I crash hard holding Lonnie's hand Sometimes...
For a few hours at least.
Doing the same things over again, and again with no end in sight only the slowing of my body fighting. And Dr.s say that this is my life now...
This is not a life, I don't want pity,
I don't want to be told it will be okay.
I am not strong enough and I just want it to end? I'm tired of feeling so worthless and broken. I can't find any happiness and I'm f****** trying my hardest.
To be positive to overcome and it just isn't fair.
I am majorly depressed, and you would be too if you were in my shoes. I can't buy things I want because of all the medications I require to barely breathe are ridiculously expensive almost as much as a mortgage payment.

I am so tired of feeling like I've been hit by a bus over and over the pain for me is excruciating because I have No tolerance to pain. Why?
I have had 5 kids yes, C-sections but on morphine. One v-bac and that was a hell of 27 1/2 hrs of labor and lots of drugs.

My husband is amazing and does so much it's unfair and I think it's grating on him. But he'll never say.
My kids are growing up and I'm missing out because of this incurable, unforgiving disease.

Well that's my vent for this time 😂

No really it's crazy how this disease called Lupus acts and really messes you up...

Thank you for taking the time to read I truly appreciate it. Remember I am here for you if you want to vent I will listen.

As always stay strong and keep fighting,

Xoxo, Misty

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My Not So Normal Life and A Few Other Things.

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