Lupus Fatigue & Sleeping Through Life

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This is exactly how I feel, only my hair isn’t as colorful & clean since I can’t get out of bed long enough to shower or have the strength to take one. The mind-numbing, overwhelming level of exhaustion hit me like a freight train on Sunday, December 30, 2012 & here it is Thursday, January 3, 2013 already. 4 straight days I’ve been in my bedroom, sleeping so deeply I don’t even change positions. My only priorities during the short periods I’m awake & can physically get out of bed are taking care of basic hygiene; taking my meds & forcing myself to drink the minimum 3 liters of water daily to prevent my angry kidney from getting infected again.

There is no such thing as time, what day it is. I managed to get all the laundry downstairs on Sunday yet it’s still in the same place, the piles getting bigger daily as I change into clean pajamas, brush my teeth as I hang onto the sink to keep myself standing. Stumble back to bed, relief washing over me that I accomplished that much as my eyes immediately close and I once again sleep deeply for hours, alarm set to take my meds at the appointed time.

If you have Lupus you understand what I’m saying. If you’re loved one has Lupus, you understand as well. Most other people don’t understand, which is frustrating & sometimes hurtful to hear statements like “get over it”, “you’re depressed, here’s an antidepressant” or my favorite, “the more you sleep the more tired you feel”.

I can’t “get over it”, I’ve tried a million times & accepted that when this happens, my body is telling me to sleep for a reason. I am not depressed & do not need another pill thrown at me, although depression & Lupus is very common and the stigma of depression itself in the world still exists today. I don’t have the energy to feel any emotions quite frankly but I seek moments of laughter, smiles & love to sustain me. I manage a few prayers before slumber overtakes me again.

I am blessed to be able to sleep like this, knowing my son is safe with his Dad. They stopped over yesterday afternoon to bring me a container of food, knowing I’m not eating because waiting 5 minutes for the microwave to heat up anything is 5 minutes too long for me, but it was nice to see them both & I appreciated the meal.

It’s 11:45am right now; I’ve been awake for exactly 3 hours but it’s time to go back to sleep..I’m actually nodding off now trying to finish this. I have many beautiful birthday wishes on my FB I still haven’t had the strength to read, but just knowing they’re waiting for me is a lovely gift! I’m truly blessed to have so many loving friends!

Good night for now! I may not be posting much but I’m reading my fellow bloggers posts as they come in & I always lift every one of you up in prayer. Enjoy the beautiful sunshine!

Back to slumber,
~Jennifer~

Living with Lupus

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I can’t remember the last time I felt this sick for this long. I hate to say I’m suffering because I am more than aware there are so many people that are in much worse conditions than I.

It’s difficult for me to write about Lupus because I know how lucky I am to be given the gift of another day when I shouldn’t be here to write this. I know, as do my family & loved ones, how many times I’ve cheated death. That in itself is still impossible for me to put in writing, my experiences I not only survived when all Doctors believed I wouldn’t, but each individual near-death experience I remember in vivid detail. I think about those times, the emergency surgeries, being on life support hearing all medical personnel either screaming “We’re losing her” as they worked feverishly to bring me back from complete cardiac arrest or “It’s time to get her family here ASAP because she won’t make it through the night”. I could still HEAR, but nobody could hear ME screaming in my head, “NO! I’M NOT DYING, STOP SAYING THAT”. Those are memories I’ll never forget unlike the thousands of wonderful, loving memories erased from my brain in minutes from my stroke.

I know that God is working in my life especially now. I know the memories I wish I had are gone for a reason I’ll never understand but have faith in not knowing. I know I remember in stark, minute detail every second of every life-threatening situation for specific reasons: to be thankful for every second of every day I’m alive regardless of how I feel; to dedicate myself to being the best Mom I can be; to always reach out to help those in need; to challenge myself to not give up or give in. Living with Lupus isn’t really living when a flare is prolonged and complicated.

This week & last blend together in a blur of pain, no appetite, forcing fluids to keep my kidneys flushed, my hair falling out in clumps, the sheer exhaustion of simply brushing my teeth to name but a few. It’s very easy to get depressed, angry, frightened because you’re helpless. You have to ride it out for however long it lasts. Stay the course, keep your faith that the suffering isn’t for naught.. your attitude is more than half the battle. I hold onto my faith for dear life & will never give up. Living with Lupus is hard, so very hard. I don’t feel sorry for myself & don’t want you to feel sorry for me. I’m waiting this out with determination & faith. Isn’t that how we all should be living? I believe so! Peace, Jennifer

Sorry Dr House, It IS Lupus

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I loved the show “House” and never missed a single episode. I can’t tell you how many times over the many years I’ve been battling this disease I wished I could find a genuine Doctor that could solve medical mysteries like the character that existed on television, for Lupus is indeed a medical mystery of epic proportions.

I have Lupus & have been in a prolonged flare that has become serious. I am suffering in pain no living creature on Earth should suffer; I’m so weak I can barely get off the sofa; so exhausted yet unable to get restorative sleep because my entire body hurts from head to toe.
I have been unable to do daily living let alone blog here yet have so much I need to say.

Yet no matter what, I will never stop fighting. I believe with every fiber of my being I’ve much awaiting me to fulfill on earth for years to come. I am a child of God and I ask you for healing prayers for me now. I am alive still because I haven’t yet accomplished all I am supposed to. PRAYERS WORK!! Let’s all pray not only for me, but for all illnesses to be healed.

I BELIEVE!! Do you?

God Bless,
Jennifer