I’ve been a chronic illness warrior for over 10 years now. It has significantly impacted and shaped the person I have become today. Therefore, I feel it’s important I share my experience with all of you so you have a better glimpse into my daily life.
I’d also love to hear from any of you who also deal with a chronic illness and how you cope day to day with being a chronic illness warrior.
First, I want to be clear and say I am sharing my experience with my chronic illness from my own perspective. The information I’m about to share is fully my own. I would encourage anyone who wants/needs more information to seek out a medical professional as I am not a doctor! No M.D. license here, although with all my experiences some days it feels like I have one!
Let’s journey back to 2005/2006 where it all began…
I was in a pretty bad car wreck which kind of kick started everything. I broke my collar bone and had a concussion from the accident (no fun at all!). Headaches after the accident were persistent and every day. I also began having low-grade fevers fairly consistently which was pretty weird.
So I sought out treatment from a neurologist given the headaches were my most prominent symptom at the time. He ran the usual neurological tests but everything was coming back normal. So as a last ditch effort, he decided a spinal tap was the best course of action. This would give us a look at a wide array of test results that could not be evaluated via a simple blood or urine test.
After a very painful spinal tap (seriously worst medical procedure I’ve ever had, two days before Christmas no less!!!), it was discovered my ANA or anti-nuclear antibody was abnormal. This indicates there is something wrong with the immune system. The doctor came in and told me he thought I could have Lupus. Say what now?? What the heck is Lupus?? I was scared, very scared! But also clueless as I had never heard of Lupus before. Merry Christmas, Rose!!
A panicked me, went off to see a Rheumatologist which is the kind of doctor that specializes in immune related illnesses. Upon more blood tests and an examination of all my symptoms (which is really the only way to determine if a person has Lupus), it was determined I did in fact have Lupus in 2007. Based on the criteria outlined for Lupus, I met more than 4 of the 11 symptoms on the list doctors use to diagnose a person with Lupus.
So what exactly is Lupus?? Well in a nutshell, it is an auto-immune illness where the body attacks the tissues and organs of the body. Basically my body is attacking itself and has gone haywire! I knew something was wrong when I was having headaches, running a low-grade fever but not being “sick”, losing my gorgeous thick hair, joint and muscle pain, fatigue, and the most obvious a rash across my face that looked like a butterfly. But never in a million years did I think it would be Lupus!!
The other symptom I started to have that made me so sad was sensitivity to the sun. I used to be a sun lover and would layout by the pool at my parents’ house on the weekends. But now, if I stay in the sun for too long, my rash flares up and I get very sick. So now I have to sit under an umbrella or wear large hats to remain all covered up whenever I go in the sun.
Bottom line, Lupus is no fun and no joke!! It’s destructive, unpredictable, and relentless.
The really awful thing about this illness is I get sick very easily and my sickness lasts for longer than the average person. For example, if I get the flu, the normal person recovers in about 5-7 days. I recover in about 3-4 weeks.
I also get what’s called “flare ups” which is when the illness is active and I am basically too sick to do anything because many of my symptoms are very prominent. Can I tell you how much fun this makes life? I often miss work or family/friend functions because of these flare ups. It can make life disappointing at times.
It’s also challenging because many of my symptoms are not visibly present. So when people find out I’m sick, many of them are very surprised. Also, the reason many people consider themselves a chronic illness warrior is that this is an illness that never goes away. There is no cure for Lupus. There are barely even many great treatment options available. But with a combination of various medications used to treat other illnesses, Lupus can be somewhat managed.
So what do I do to ensure I minimize flare ups and prevent myself from getting sick? Well, the minute I hear someone sneeze or cough, I run for the hills! LOL. In other words, I try to steer clear of them, wash my hands often, and take vitamins. I also make sure to stay on track with my Lupus meds as best as possible – easier said than done sometimes I will admit as I’m on quite a few. And lastly, I try to get plenty of rest. Because I work full time, my weekends are reserved for rest most times. I guess this is what caused me to become a TV junkie, LOL.
I used to be really angry about having Lupus and let’s face it, some days I still am. But after living with Lupus for 12 years now, what I’ve come to realize is the saying “that which does not kill you only makes you stronger” is so very true!! I could choose to succumb to this illness and give up my job and basically my livelihood. Instead, I choose to fight against it and work hard to keep living every day to the fullest. I choose to be a chronic illness warrior!!! This wouldn’t be possible though without the love and support of my family, mainly my parents. They are my pillars that keep me going strong. For that I am truly grateful to them.
In addition to my parents, a person and article that really helped me deal with Lupus at the beginning was Christine Miserandino and her article “The Spoon Theory”. In this article, Christine explains to her best friend what it’s like living with Lupus on a daily basis with spoons. She states that when people with Lupus try to get through their day, they only have a handful of spoons whereas a healthy person has an unlimited supply of spoons. Each activity throughout their day uses up a spoon such as taking a shower, getting dressed, or driving to work. Once you are out of spoons, your day is basically up and if you try to keep going you run the risk of running yourself down. So essentially you have to pick and choose wisely the activities you do throughout the day when you have Lupus.
I found this article to be tremendously helpful when it came time to explain what living with Lupus was like. It also helped me figure out how to live with Lupus and better manage my daily life.
I’ve included some other links below that helped me truly understand Lupus that I hope you’ll find helpful. You can also reach out to me directly and ask me any questions you may have. I am an open book when it comes to living with Lupus and being a chronic illness warrior. Sharing and talking about Lupus is the best form of support I’ve found.
Thank you for spending time with me today learning about what it means to be a chronic illness warrior. Lupus can be a really hard illness to live with but with the right doctors and support system in place, you can live your life well!
Additional Links for Reference:
The Spoon Theory by Christine Miserandino