29 Aug Living With Lupus: Part 2
If you haven’t already, please take a second and read “Living With Lupus: Part I”. It gives a good overview of Lupus and my diagnosis.
Life is all about balance.
With anything, you have to learn how to deal with things in a way that won’t add more stress and disruption to your life. Sometimes that can be hard. In the beginning it was difficult for me to adjust to my new circumstances. I fought it with all the will power in my body, inevitably, causing myself more pain and frustration. I was one of those people who knew everybody, did everything, and went everywhere. I was always on the go, involved in dozens of school clubs, and working (among other things). I was a social butterfly and loved it. Being diagnosed with Lupus would bring all that to a screeching halt, demanding me to re-organize my life and slow down, something I couldn’t get used to. I liked being busy, always active, and constantly involved in things. It made me happy, and kept me productive.
The first two months were extremely painful.
It took a while for my medicine to kick in. I had to take a leave of absence from my job, and contemplated postponing school for another semester (thankfully I didn’t). Some days I would wake up and feel like my wrist and ankles were broken. I couldn’t walk, and would have no movement in my wrists. Other days, my knees would burn so bad that just getting off the bed was a dreadful task. By the time I got up, showered, and dressed for the day, I was extremely exhausted and fatigued. Multiple daily naps became the norm.
I didn’t know how this would play out once I was back in school. I imagined myself finding places in the library, and the student center, to nap between classes. Laying down on the couch, in my advisor’s office in between classes, helped me get through many days. With out those naps, little things like eating, or holding a pen to write, became tiresome and difficult. On average it took me two hours to talk myself out of bed every morning.
Fatigue is no joke.
I could sleep for 14 hours and still wake up drained. I would set my alarm clock to go off one hour before my intended wake up time, using that extra time to give myself the pep talk I needed to get up and on with my day. Some days were more successful than others. Other days, I would just give up, roll over, and go back to sleep. Those days left me feeling miserable and unaccomplished.
What kind of life could I expect to live, if I could only get myself out of bed 2-3 days a week? I started missing a lot of classes, and communication with friends became less and less. I didn’t know how to explain what I was going through to people, and when I did, most just didn’t understand. Having to always explain why I’m tired, the level of pain I’m experiencing, or why I couldn’t hang out, was exhausting within itself.
I decided to just go ghost.
Most just assumed that I was busy and would catch up with me when I did decide to resurface. Others just gave up on me altogether, attributing my absence as a message that our friendship wasn’t important. For the most part I felt alone, and slipped into a dark depressive state. I continued to drag myself to school, to smile when in the company of others, and even managed to go out a few times, but deep down inside I was hurting. The things I went through physically, mentally, and emotionally have molded me into the strong, fearless, motivated, and humble individual I am today. Lupus has pushed me to places I never thought I could come back from, but I did, and better than ever.
Family and Friends
I remember the first year I did the NYC Lupus Walk with the Lupus Foundation of America. I was excited to fundraise and rally people together for this cause. There were so many people present in my life, I thought it would be a fairly simple task. My cousin ordered shirts for everybody, and to my surprise I made my $1000 goal in a month. I was never the type to ask people for anything, so putting myself out there for the Lupus Walk was a little unsettling. When I started getting such good feedback, and “support”, from those around me I felt good. Still in my depressive state, it was nice seeing people show their love and appreciation for me.
The day of the walk came and reality reared its ugly head. Many of my “supporters” stood me up, leaving me with tons of left over shirts and feelings of disappointment. In the next years to come, many would drop in and out of my life. Most couldn’t understand my struggle, some didn’t want to be bothered, and others just thought I was exaggerating. When I announced my diagnosis, I expected all those close to me to get informed about this uncanny illness. It still baffles me to this day when I’m asked to re-explain what Lupus is and how it affects me. Lupus made me see those who were real in my life, allowing me to trim out the fat. My close circle has gotten extremely small and I’ve become very selective about who and how I spend my time.
It’s no secret that I work in the film industry, and if you didn’t know, it’s one of the most laborious industries you can work in. Being on set for 12 hours a day (for weeks) can be gruesome, but I love it. I’m always anxious when a new opportunity comes my way. I know I’ll do a stellar job, but I’m worried that my health will keep me from performing at my best. Lupus is so unpredictable. I can go months with no flare up, and then randomly be out of work for weeks. I’ve had to turn away opportunities, or cut some short, because of that.
In an industry where your reputation is everything, I often worry that my unpredictable health will make me seem unreliable, making people not want to hire me. I’ve gotten to a point where I try not to think about it. I just do my best, and take life one day at a time. I’m less stressed that way, which in turn, adds to my well being. Working for myself is the ideal career path and I’m well on my way.
In general, Lupus has changed my life in ways I am grateful for. Yes pain is part of my everyday life, yes I’m always tired, and yes I worry about all the complications Lupus can cause. Despite that, Lupus has made me more resilient, focused, and happier. With this illness being so unpredictable, I’ve learned to appreciate every thing in my life. It has really humbled me and taught me how precious I am. Because of Lupus, I’m driven more than ever to create my own path (allowing me to control my time and my life), spread happiness and joy to others going through rough times, and to live life fearlessly.