How Having A Chronic Illness Gave Me More Time to Dream
I find that being diagnosed with a chronic illness has made me become more of a reflective person now more than ever. On days when I’m not having a terrible flare, I find myself going out of my way to do things that I wouldn’t normally do. I find myself attempting to do things that are probably on some imaginary spoonie bucket list that people who don’t have chronic illnesses might not understand. I have spoken at length about the ways having a chronic illness can drastically alter a person’s day-to-day routine and even change how certain tasks are accomplished. Yet, in trying to remain positive, I have learned how to turn days of rest designated because of my illness into days of intense dreaming.
I find myself dreaming about what a perfect day would look like for me
My mind wanders to simple activities like a beach or pool day where I could actually get in the water without thinking about contaminating my open wounds. Or maybe that book that I read that said chlorine wasn’t good for my HS and how pool days may never be the same for me. I think of beach days where I’m wearing a super revealing bathing suit and holding my arms high to the sky without a care in the world of what scars may be revealed. Sure these thoughts could be considered shallow, but for me, they are also dreams. These dreams allow me to have a moment where I consider what life might be like to not have a painful, debilitating disease like HS.
Chronic illness can rob you of feelings of normalcy
Sometimes I forget what it feels like to reach my arms up without the tight feeling of scar tissue as I try to grab something from a higher position. I forget what it feels like to wear super tight shorts in the summer and get all sweaty without worrying about my HS. When I think about all of these things, I am really just reminded that we all have some notion of what a perfect day looks like for us. Sure, no day is actually going to be completely perfect, but sometimes it’s fun to dream about hypothetical scenarios.
If I didn’t have HS, would I be a different version of me?
It’s hard thinking back on your life and the person you may have been had chronic illness not stopped you dead in your tracks. While it might sound incredibly cliche, I’ve realized that all I can do is try to find reasons to keep moving forward. All I can do is find that source of light and keep breathing into it and encouraging my fire of positivity to blaze even stronger. In stopping to realize that I only have one life to live, I have to look forward to creating moments of happiness and curating that one perfect day for me even in the midst of living with HS.
So I say all of this to encourage other warriors to consider what a perfect day would look like for them. Something tells me that this probably is not that hard of a task either because I suspect many of us have had these same thoughts before.
If you had the chance to curate a perfect day in your life, what would it look like?
Have you taken our Managing Treatment and Medication Survey?