A Little Breathing Room

There’s a version of a popular saying that states: “Tell the universe what you want and then watch it laugh.”

Previously, I had declared that 2018 would be the year of remission for me, and I instantly got a hacking cough, a runny nose, and muscle pain. I rode it out and figured, well, the first couple of weeks of the year tried to challenge me but I’m still determined. I’m still pushing for remission because you know that I get to make that decision. (Yes, that was sarcasm.)

Since making this decision, though, I will say that my attitude has been a little better. I was feeling so down lately because I am honestly very tired. When I received my diagnosis, I was a very active person: I sold homes, was quite social, and had a lot going on. I was earning a substantial living and had a high-rise apartment in Downtown Orlando overlooking the park. I was in the center of everything that was happening — and then lupus squashed my life.

After the doctor told me I could no longer work, I went into “work mode” right away. I was 46, and even with this diagnosis, I knew I still had to make a living. I applied for Social Security disability, but like most people, it took a small forever for them to respond with a no. Almost overnight, my life went from tons of walking to barely being able to move. I’d been a successful fashion blogger while doing all of the other things I was doing, so I had some experience with creating an online income. But I went from “You’re fighting for your life” to “How are you going to pay to live?” within a five-minute span.

So, that mental part never really allowed me to sit with my disease, to truly process some parts of it — I was just feeling worn out and tired. Since I have decided to go into remission, I have also decided to take it a little easier. I recently moved into a place that requires less outlay of expenses, but I really love my new place. It’s in a more “local” type neighborhood, which means I get local prices on everything. I originally lived in a more touristy area, where no matter how hard I tried, I could never avoid the higher costs of things. This new move will allow me to relax a little.

I’m already seeing the results of this decision in just a few short days. I am excited about working, because now I can go a little more slowly; really plan things out and hopefully produce higher-quality work. I’ve also decided to try to get a little more exercise — take a few more walks when my energy permits. Lupus is such an ugly diagnosis, and I truly think people who are not experiencing it only think in terms of “physical.” Those of us who are battling know there is so much more that goes on in this unpredictable life we lead. I truly pay attention to things feeling “off” for me. I realized I had yet to just sit down and soak in nothing but my diagnosis. I didn’t want to deal with how I would pay my bills, if I would find a mate, or if I would always be tired or in pain, I simply wanted to rest my mind and my body for a little while and just focus on lupus.

I decided that I am going into remission. I’m not unrealistic. I know that it’s not really my decision to not be in pain, to suffer from fatigue and the many other things that lupus brings on. But for the first time since February 2016 when the doctor delivered the news, I’m able to take a deep breath and only focus on lupus as I continue to learn to cope with this battle.

***

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to lupus.