A Day in the Life of Lupus

We recently celebrated World Lupus Day and I hope you remembered to wear something purple. Living with Lupus for me is just another day of living. I do remember the days before I had developed this terrible predicament, but with my memory becoming foggier each year, I wonder how far away those memories will become. If you are here and have lupus too, welcome fellow Lupie.

If you live with this illness, I’m probably preaching to the choir, but if not, I’d love to share a day in my life and the struggles I face so maybe you can better understand your loved ones. Remember, no two Lupus journeys are the same and always consult your doctor for any treatments or medical advice. Here we go!

Let’s start with the brain. They use the term “brain fog” and honestly, that’s the best way I can describe it. Sure we all forget things. Even before Lupus, I would forgot where I put my glasses while I was wearing them or talk on the phone while searching for my phone. We’ve all done it. With Lupus, it’s similar but with an additional layer. 

The more inflammation I experience that day, the worse it gets. It feels like being trapped behind a glass wall and ALL of the information you need to have a normal conversation is trapped behind that wall. Tap the glass all you want, but that information is stuck in the back so you may find yourself staring into space when someone asks “Did you remember to take out the trash?” 

On my worst days, I’ve found myself forgetting how to start a car, confused as to why I couldn’t remember ANYONE’s name (including my pets), and walking around with tears in my eyes because I wasn’t quite sure where I was. I have two years of my life that I have ZERO recollection of. Hence why I take lots of pics. I have brain damage from the excessive migraines and cognitive dysfunction, so lupus doesn’t help in my progress to keep my thoughts straight.

On days I can almost keep my thoughts together, my skin decides to be a drama queen. Suddenly I get rashes across my face, my legs and strangely, my hands too. “What in the name of shrimp allergy is this nonsense?” is usually my go to phrase because that’s what it feels like; an allergic reaction. Sometimes I Benadryl myself into a nap like status but other times I’m walking around wearing patches of hydrocortisone thinking, “Is this a sexy look for me or what?” My feet already turn purple with Reynaud’s disease but let’s add some itch cream on that and see how many lovely shades of purple I can turn under it. 

One of the most common symptoms and obvious things I deal with is pain. It’s pain on a whole new level. Some days it’s muscle pains, some days it’s joint pains, and other days its nerve pain which is my least favorite. Muscle pain is gradual and Tylenol or Advil can somewhat tackle that issue. Joint pain is a little worse because it can affect your mobility. There are days that I have had to use a wheelchair to get around. Nerve pain to Lupus is what Mike Tyson is to a featherweight. It can knock you out, and leave you breathless. I do my best to hide my pain symptoms or I just avoid people on days that I can’t.

So by now I’m sure you are picturing me wheeling around the house in my wheelchair, doped on Benadryl, covered in itch cream, and yelling obscenities because I can’t remember which animal I’m trying to blame for who peed on the floor. I call that a Tuesday by the way, but this is just a little insight to some of the major issues I face most frequently. So if you aren’t a Lupus sufferer, have patience with those who are. If you are a Lupus sufferer, just remember that you aren’t alone with your battles. You have a fellow Lupie Warrior right here!