It’s been about a month and a half since I was diagnosed with lupus. Since then my life has been a whirl of doctors appointments and blood tests and things of the like. Having to adjust to my new life has been quite the adventure. The thing about lupus is that it can range from hardly feeling symptoms to life threatening; and anywhere in between. When it comes to lupus patients, we’re all different; so I’ve had to find out where my body is at on different levels. I’ve been going to a bunch of different doctors to find out which parts of me are being affected by lupus; but also on a day to day basis how much I can take.
It’s hard enough for me to understand my new limitations, and its even harder when the people around me give me crap for my new limitations that they can’t understand. I used to be a very active person, of course now that I have a chronic illness that has changed a bit. I don’t always have the energy to do things I used to enjoy. I have a hard time giving myself a break sometimes. So I want to educate people on my illness and the effects it can have on a person. Maybe you know someone with a chronic illness, if so, I hope you will read this to better understand what they’re going through.
Lupus is an autoimmune disease. It’s where your immune system is crazy and attacks itself because it registers its own tissue and cells as an enemy. Lupus can attack any part of your body. The list of symptoms is very long. The symptoms include, but are not limited to, the following:
Sores in mouth or on skin
The Butterfly Rash
Confusion and/or seizures
(For more, check out Lupus.org.)
I was having a lot of the symptoms listed. Most people with lupus go through a lot before finally being diagnosed with lupus, lucky for me though, I was diagnosed fairly quickly. My Freshman year I was diagnosed with chronic ITP, although its not believed that was a manifestation of my lupus early on.
When my joints first started acting up, I was in an incredible amount of pain. I could barely walk most days, if at all. But yet others days I felt well enough to play ultimate frisbee with my youth group; which for me means a lot of running and jumping. Some days I felt great and other days I felt awful. I was feeling a ton of fatigue as well. I have never taken naps, but soon I was taking them several times a week. Not only was I exhausted and couldn’t walk, but my fingers started swelling and my wrist was hurting. I thought it had been from typing on my computer, but I found out later it was my lupus. I’ve always loved American Sign Language, but I was unable to fingerspell, or do any signing efficiently, because my fingers were so swollen. On cold days my hands would turn blue too; and I don’t mean tinted blue, they were like dyed blue. And everyone at my church told me it was the dye from my new jeans which I had conveniently just bought the day before. When I started having bad fevers was when it became enough, and I was taken to the ER and admitted to the hospital. Soon after that I was given a definite diagnosis.
So that’s been my life. Some days are harder than others. There are times I don’t want to get out of bed and other days I want to run my heart out. This week I biked over 20 miles in two days, but who knows how I’ll be feeling tomorrow? My biggest struggle is not having the energy I did before and not being able to breath as well as I used to. Sometimes stress can cause me to have heart palpitations; and on the fourth of July I was having really weird breathing problems from the anxiety the fireworks caused me, which had never happened before this year.
Another thing that has been different in my life is that being out in the sun makes me sick. Some lupus patients get the butterfly rash and some get sick and others get a different symptom; well I went for a walk shortly after being diagnosed and I found out then that I get really sick if I’m out in the sun for extended periods of time. Plus the heat makes it hard for me to breath.
I don’t have a lot of energy, and a lot of simple tasks for average people are exhausted for people like me. Nowadays I count a mile walk to the store with my brother as a workout, or mowing the lawn, or 20 squats and some crunches. If you know me, you would know that I love fitness. I used to do 2 hour Jillian Michaels workouts. Heck, I did P-90x because I was bored. Now I do some squats and I want to throw up. But I have to remind myself its not because I’m out of shape, its because I’m sick. (To learn more about fatigue in chronic illness, check out The Spoon Theory.) On top of all this, I get really nauseous really easily. I can’t eat a lot because if I eat what used to be my average meal, I get sick.
But you know the worst part about all of that? When I try my best to cope with it all and no one appreciates my effort. Hey, I got out of bed today! That may not seem like a lot to you, but to us spoonies, its huge! So please, try and understand us. Because we won’t call you out on it, but it can hurt us. Don’t judge me because it takes me twice as long to do stairs as you, I’m not a klutz for dropping things constantly, that’s my body being affected by lupus; and I’m not an idiot for forgetting things, its called lupus fog. I don’t say a lot of this because I don’t want lupus to be my crutch. I’ve heard “you can get away with anything! Just blame it on your lupus!” so many times. I don’t want to be that girl. You know? I don’t want to blame my illness for everything and I don’t want to complain about it either. So please don’t take this post as me complaining. Its simply me stating my situation. I know, I’ve got it so much better than most lupus warriors, so I am so grateful for that. But sometimes it can be frustrating dealing with people. I wanted to write this so maybe someone will understand better.
Thank you for being so kind as to read all of that. In closing, I want to share some of my favorite lupus related pictures. Enjoy!