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

Lupus thoughts and Ramblings June 25th

Hey there. I hope you are staying safe and sane in this crazy world. It's a lot to stomach for anyone. I can't go crazy. I already am! Serious question? When do you tell your family that their joking around has become hurtful? It's to the point where I feel like I am in high school again, trying to compete for their love and attention. I am 45 yrs old and feel like I am treated like a child at times. I am told that I am too sensitive and that I take things out of context, that I should just take it, and know they are playing. Every night it's a roast the hell outta mom till she cries or locks herself in the bathroom so no one would see. it's not like anyone would care to be honest. I could cry for hours and no one would even flinch. When did I become invisible, and so small that it doesn't matter if I am even around? I am ignored when I am trying to be a mother, I am ignored when I try to let people know ho...

Let's talk showers

Let's talk showers No, not the kind that falls from the sky when it rains. No, not meteors, but regular showers people take to keep clean. A regular person is in the shower up to 5-10 mins maybe 15 at the most. Well for someone with Lupus, MS and Fibromyalgia it's so much longer. For instance, it took me almost an hour to shower the other day. Why is this you ask? Well, I can barely stand on my own, and do things like lift my hands to shampoo my hair without being so exhausted I have to sit down. So it begins, the clock ticking away. *10 mins gone * sitting down. Once I finally can I stand back up and commence the ritual of the shower but wait, after *10 more mins* I need to take a breath before I pass out (literally) it takes sitting down and breathing slowly to make it not feel like my heart is going to leap out of my chest. I look at my handy dandy Fossil smartwatch and it says my BPM is 140 which I believe. I try to slow down my breathing, a...

ESSENCE MAKEUP REVIEW

Makeup can be high end and really expensive or drugstore and very budget friendly. Just because a drugstore brand is budget friendly doesn't mean it is bad quality. Right? Recently while perusing my local Ulta store with Jayedyn (on the hunt for a blue eye liner ) after looking at all the different brands from Urban Decay, Ulta , Nyx etc. and coming up empty and disappointed we were ready to walk away when i suggested one more look . Tucked away on an end cap of the isle was a small product line. I had never even looked at this brand before but sitting on the shelf was the perfect blue shade of eyeliner that Jayedyn was searching for & on a 15 yr old girls budget too. I started to take a closer look at some of the products . The nail polish is what drew me in, the colors were so pretty, it also looked like there were a few dupes for some high end products as well. I ended ...

My Not So Normal Life and A Few Other Things.

Search This Blog