Lupus (Pt. 2)

Well, here we are again. Another day sitting at my desk at work answering calls. I made it in on time today. That may not mean a lot to most of you, but for me that is a big step. Now, normally I am not very late by any means, but for some reason today, I felt good. I woke up not bent over in extreme pain. But I will not take advantage of this one good morning. As you will see below, my daily struggles can be a lot more than most will ever be able to deal with.

5:55 AM: Alarm goes off.

6:00 AM: Bathroom and decide if I can really do this today.

6:10 AM: Coffee.

6:15 AM: Lay in bed, pain in leg is throbbing, stomach in knots, and I'm so tired.

6:35 AM: Force myself up to get dressed, brush my hair, and put on makeup.

6:45 AM: Wake up my daughter. Bathroom.

6:50 AM: Finish getting ready and lay in bed for a just a few more minutes.

7:05 AM: Get up again, take pills, brush daughter's hair, and brush my teeth.

7:15 AM: Pack up daughter's lunch and get my purse ready (don't forget the pills!). Bathroom.

7:25 AM: Leave for work.

Now, all this is just me getting ready to leave the house. If I make it to work, then my day consists of fighting to stay awake, trying to not snap on everyone, and sugarcoat how I am feeling, because most people don't care to know the truth, or I hear, "Oh you don't look sick."

In my head, I am cursing the crap out of them. "Oh I am sorry that my body isn't growing damn horns with flags saying what's wrong!" Unfortunately, a lot of the time what is happening inside our bodies is not visible on the outside. A lot of times it takes years before we are diagnosed with something because the illness can take many forms and shapes, and sometimes it goes into hiding. I always remind my daughter, never judge what you cannot see. I think she finally get's it now that she sees what goes on behind closed doors vs. what shows when I am out and about.

If I have made it through the day without fully breaking down, then at 4:30 PM I am heading home.

Along the way, I will try my best to grab some groceries and pay the bills. Some days it is possible, others my body is burning and needs to rest.

5:30 PM: Home. Feet swollen, bloated, my head hurts, and a rash across chest and face (that's if there was sun!). Bathroom.

5:45 PM: Cook dinner and help with homework.

6:00 PM: Rest. Take pills. Drink water. Bathroom.

6:15 PM: Pick at the food I made for dinner. Some days I eat, others just the thought makes me vomit.

By 7 PM, I am done. I am burnt out and swollen all over. My fingers to my toes are in pain. I struggle to do the simplest of tasks. I take a warm shower, sitting in the bathtub, hoping for the pain to stop. Crying.

7:45 PM: PJs.

8 to 8:20 PM: Get the munchkin ready for bed, read stories, and talk.

8:30 PM: Bathroom and bed.

Between 9 PM and midnight, I have tossed and turned, fallen asleep and woken up, taken more pills, and gone to the bathroom at least three more times. Finally, I will fall asleep for a few solid hours, only to be woken up by 3 AM for yet another bathroom visit. Next thing you know, it's 5:55 AM and my alarm goes off.

All in all, I would honestly not wish this on my worst enemy. It is not easy. I go through major mood swings and can't always control my emotions. The pills, the aches, the pain, and the rollercoaster that is my life is not something that everyone can handle.

I have lost friends, potential relationships, and even family through this. It's hard, but I find those that stick by you through the toughest times are those that truly care about you—all of you. They want to make sure you are okay at all times and understand when you cancel plans at the last minute—because hey at 9 AM I felt great, but now that it's 3 PM and I have actually done things (like shower or made food) and my body has had enough.

Some days, like today, start off much better.

But let's not get ahead of ourselves, I could crash at any moment.

I refuse to force myself to do more than I know my body can handle. One good day forced will make for a week of bed rest.

Until they find a cure...