Having a disease like lupus is the most stressful thing in the world!
It's funny, How you aren't supposed to stress about this crap and all you do is stress. Why?
You stress that you are not good enough to work?
You stress when you have to take a day off from work.
You stress that you are gonna cause a Financial burden on your family? Because now you can't work.
You worry about if your spouse even finds you sexy anymore?
You stress about your hair thinning, your eyebrows and lashes falling out, and the rashes that come along with it all.
You worry about if you are still pretty. At least I do. .
You worry about your looks and the weight gain that has come on from bedrest, immobility and medications.
You stress that you are getting worse ?
You worry and Stress about every new symptom?
You worry about your family?
You wonder why they don't include you in the day to day activities/ decisions?
It's always said in hush tones (that BTW) I Can hear!
"Don't worry mom she doesn't need that stress."
So guess what now your worrying about what they don't tell you..
You worry about your family. How are they coping with this all?
You worry that your kids will resent you because you aren't at the activities they are in?
Or can't go to them because you're having a horrible flair.
You worry about the medications you take. Are they going to help or just make things worse?
You worry about the pain,
When will it be enough? When will you say I am done and mean it ?
I have heard so many people's stories and known people on Lupus support groups Where they have ended it. All because it's just to much and they can't deal or handle it all. One day we will be chatting online and then a few days later you see their obituaries. This Breaks my heart.
I am not gonna lie, I have had the thought on many of sleepless nights. But don't worry I am not that person. I could never do that to my family..
You worry about what others think? Why it's so much easier to just hide yourself away, not to bother with the questions "How Are You"? "How are you feeling?
You wonder Why and How this is your life?
Why you have to either fight or Die?
Why you have to push through each and every one of those days so much harder?
You worry about the Pain.
It's a constant thought in my mind. I have no tolerance to pain. Yes, I have had 5 kids but they were C-sections except one and I was on morphine plus that's also a different kind of pain. One that gets put away because their is a new life dependant on you for their every need.
I am always asked what my pain feels like?
The pain I experience every day is like a ton of bricks being dumped on me , being hit by a Mack truck, being sliced up and down over and over on my legs. The Stomache pains that feel worse than cramps or endometriosis pain. The constant fevers and low grade temperatures. The constant feeling of having the flu. The aches and pains of every stinkin part of your body. So much depends on the day, weather or what I ate.
It's hard not to break down and cry every sec of the day . When all I can do is fake I'm fine and smile.
But I'm not, How can I be? I am loosing my mind, my soul and my heart . Every night or (when) I get some sleep. Thanks Insomnia!
I pray that i will be taken out of this world . Just so my family can grieve and move on with their lives. And No more worries about Mom!
I have become a nobody, I am just the monster upstairs , the sick , ugly, useless, barely showers or makes it out of bed. Just the Ugly Monster. Sometimes -I feel so ALONE!
I don't want to be alone .
I want my old life back! Enough is enough. Am I right?
Why do we worry about the things we can't control? Why is it easier for someone else to do the things they do ?
To be honest I think about this every day.
I am always worrying !
As a woman we tend to worry a bit more then men esp. Being a mom. When you are chronically sick you worry so much more.
Lately, I have been feeling like I am loosing it all.
My kids talk to their dad about everything. I never know what is going on. I get frustrated because, I want to know what the hell they are doing.
I feel like my husband gets so angry with me because I have been forgetting so many things.
I also have been so mean and snap at everyone I'm told.
I don't understand, I don't feel like I am that way. Maybe I am.
My kids are so used to me being upstairs now I get the occasional kid coming in my room and cuddling with me They make sure I have food and drink when needed, but it feels like they don't want me around?
I am always being told, when I'm down stairs to "Go lay down". Trust me, if I wanted to be upstairs I would be. When I am down with y'all I want to be.
My husband is so beyond tired that when he comes upstairs he sleeps. -Per the normal human beings. We usually talk and cuddle before falling asleep but now he sleeps over on his side and doesn't touch me .
He isn't being mean, It's just he knows that I am In pain and
when he puts his arm around me his weight will hurt me.
Which is true.
He always kisses my shoulder when he turns over and will hold my hand when I need it. But I feel something missing ya know?
So now I question if it's truly me?
Do I make things worse?
Am I the one that is being mean and hateful? Do I push them all away?
Why Am I so sad and miserable?
I know that I am sick and some days I need to rest more and I do.
I feel like I could sleep for days even weeks at a time .
My legs hurt like hell but I can still walk a bit even when knifes are cutting and slicing me non-stop. That's what that feels like.
I am weak but can push through for a few hours without collapsing or falling on my face.
I am able to stand a bit longer as well but not enough to walk Disneyland, be on the rail at Blue October concerts. Or even walk in Las Vegas .
My pain is tapered off a bit more now so I don't cry as much. I wonder why?
I saw my Rhuematologist recently and he put me on Lyrica .
I believe that this is helping, as of now. I am thankful i can do a bit more and
hoping that I can continue to slowly progress, that I am able to loose the weight I have gained and that I can be happy.
But as of now I can only hope, pray, Believe and do what's needed to make it better.
Does anyone else feel like this? Do you have any suggestions, ideas or things you do?
If so let me know in the comments.
I think I am gonna quit while I can my fingers are starting to tingle...
Thank you for taking the time to read and letting me share my true feelings, Symptoms and thoughts of it all. Till the next one.
As Always
Stay Strong and Keep Fighting
Misty
*Found my quote photos on Pinterest, etc.
Lupus in color and Mantraband
I am now a ambassador for MantraBands Ask me about them plus I have a code for a 10% discount using MISTYKJ@YAHOO.COM.
*These are my favorite cuff bracelets I wear all the time. I have Fearless, Infinite Love, Dream Believe Achieve
Comments