A Day In The Life Of

Lupus In Color is presenting a day in the life of a lupus warrior.   A day to give a little insight to those that may not truly understand what lupus puts a warrior through.  It may sound a bit disjointed but that is the life of a lupus warrior sometimes.

It’s 3:41am the pain woke me out of a dead sleep. What’s funny is I couldn’t tell you where the pain exactly is. I just know it feels like my insides are in the worst war ever and my body is its war zone. I guess I’ll try and get up, go to the bathroom, get some water and head back to bed. Maybe the pain will subside. … to be continued. ….

well after tossing and turning trying to get comfortable in a fit of pain, I finally fell asleep. Hmph 3+ hours isn’t bad, I’ll take it. The sheets are soaking wet from sweat..gotta get up… It’s 6:54 and I have to get ready to start the day. Although the pain internally has eased up my joints are on fire. I sit at the edge of the bed trying to get up the nerve to place my hot painful feet on the ground. …easy does it…easy… whew…finally. …that wasn’t too bad. At least today the hot coals were cooled by good thoughts…. I sit……still sitting…..I’m gonna sit a little more just to be sure the hot rocks don’t strike…sitting…waiting….

Oh No, what time is it? It’s 7:03 I’ve got medicine to take….but I’m still sitting….waiting….

To be continued…….

It’s 7:30am… I was able to get out of the bed after swinging off the side for 20 minutes. I felt like a kid jumping out of mom and dad’s bed LOL. That was a great memory….. you have to enjoy those special moments even in Pain right? ….. anyway….well I stumbled downstairs not without difficulty though because I think I let the blood flow too long and my legs went numb… numb legs and blurred vision. I think this medicine I take has created some vision issues.. Mental note to talk to doctor… walking down the stairs…whooo  let me hold on I have some dizziness…just need to make it to the table……

it’s 11 am and I forgot to log in to update. . By 8 am I finally got to my pill box to get my meds.. the dizziness has stopped but I definitely will call the doctor. I mean I’ve only spoken to him three times over the weekend another time won’t hurt…. anyway. .. I was confused about whether the first medicine I take with food or without….. sheeesh this lupus fog is starting early. .. to be continued….

The day is getting better, I think….. Went out to get groceries and realized I forgot my list… was talking to someone and couldn’t remember the name of the book…THE CROSSROADS…. wait I just remembered that LOL…walked out of the store and I lost my keys and couldn’t find my phone…so I thought until I found my keys in my hand and I was talking on the phone. ..ROTFL sometimes you just have to laugh and roll with the day. At least I remembered my head  wait where are my groceries? 😳 …to be continued…

OMG this lupus fog has inundated my day. I found my groceries and had to make sure the bags were light enough for me to make the 15 trips from the car to the house. I had to sit in between just to catch my breath. The lupus fatigue is beginning to set in and is coming on like a ton of bricks…. finally finished and went to go to the bathroom…go to wash my hands and wondered did I take all my pills this morning? I shrug and look in the mirror. …Damnit. WTH is that on my eye…nooooooo not a lupus lesion right on my right eyelid looking like another eye.

Red. .swollen….itchy.painful… I sigh…then began to cry…sometimes my lupus life comes with too many ups and downs….today is one of those days….to be continued….

Its 5:01 pm…. just took my evening medicine… I had to count the pills in order to not let that fog to trick me…Lupus fog…lesions…..created a nasty headache. ..I know I should be cooking dinner but I just don’t have the energy. I’m gonna let the lupus fatigue take over and take a nap…

…to be continued….

9:45 pm…hmmm that nap felt so good makes me want another. I fell asleep in a cocoon of so many different emotions. A myriad of several thoughts…… awakened to being more tired than when I fell out. Lupus fatigue can’t be satisfied with just a nap. Good thing my son came to check on me. “Mom I made you some food sit up and eat. Dad is working late so I’m here.” My sweet son shouldn’t have to worry so much about me and take on a caretaker role. ” Mom…which medicines do you get at 10 I want to make sure I get them ready.” Acting like the man his father has been teaching him to be since day one. Lupus messes with your head when you see your loved ones having to be your great picker uppers….

…..to be continued……

It is 11pm and I took my last dose of medicine on time thanks to my 15 year old son. Last night I wasn’t able to sleep well and insomnia tried to keep me wide eyed. Sometimes insomnia is a nasty nemesis of mine and many other lupus warriors. It is a real hard hitter than can increase the lupus fatigue. … Tonight my husband returned from work, praised my son and prepared me some hot tea and lit some scented candles in an effort to relax me to fall asleep quickly and effortlessly. I look at my husband and wonder how I would have made it through these difficult days. He works so hard and is a great man, husband and father. I tell him how much I love him and am happy to be his wife. He smiles, places a kiss on my cheek and tells me, ” I wouldn’t have it any other way. Rest!” *cue overly stimulated emotions that come with lupus flares* I finish my tea as I listen to my husband’s day and lay down.

Hmph, although lupus issues have come and gone all day, I have to be happy just because I was able to live in it. I lay listening to my family in the other room laugh and discuss their day.

I realize at that point it was a good day in spite of lupus. .. It’s time to drift off to the voices.

Tomorrow is a new day with lupus..I’m not sure what it will bring but I’ll live in it in strength and power to beat lupus one second at a time.

… to be continued another day. … another place in time….

I have lupus, lupus does not have me!


One thought on “A Day In The Life Of

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.