I feel like a hypocrite…
Lately, I’ve been sleeping on the couch instead of in my bed next to my husband.
There was no torrid affair with a movie star or falling out. Instead, this is all thanks to the plethora of illnesses that I’ve collected over the years. The biggest culprit as of late has changed from my mostly-controlled Systemic Juvenile Idiopathic Arthritis (SJIA) to my Fibromyalgia. With that comes allodynia, or that thing of when sensations that shouldn’t hurt you do hurt – like clothing touching your skin. Our couch is super soft and feels like a fleece blanket so, when my Fibro flares up, that’s where I live.
That doesn’t mean I slow down by any means. I do a million things from that couch: work on my masters, plan advocacy events, raise awareness of illnesses or money for new treatments, mentor others, write, run two websites, host a weekly chat, Skype or game with my sister, be a badass friend, play with my guinea pigs, pass out and snore, and more! I do sleep – promise.
I’m not superwoman. I know this. I have dealt with such bad fatigue that, when I have the energy to accomplish these things, I have to act. Call it making up for lost time, being stubborn, hogging opportunities – I call it helping others. That’s what I love to do.
Participating in such a wide variety of things contributes to stress and, in turn, pain at times. It takes away from things I might be able to do with family or for self-care. The topics I write about – relationships, self-love, sexuality, dealing with comorbid conditions, managing healthcare, recovering from childhood abuse, and more – resonate with others. They are topics that aren’t covered well by other patients, physicians, healthcare professionals, organizations, and more.
I do all of this because I know that I could have used someone like me as I grew up, as I learned more about my illnesses, to show that you can still be sassy, realistic, have a crummy backstory, and STILL live an awesome life despite rocking a replica House, MD cane sometimes.
I could stop beating myself up over other people's issues. Sometimes people can't be pleased and I need to let that be their problem.
So much about me taking care of my health was getting ok with my couch. All my illnesses do better if I am partially elevated, especially when I'm sleeping. Not to mention that when I wake up in the middle of the night it's difficult to grab my things and get downstairs without making a scene. So instead I turn restlessly for hours, which can't be good.
When I am doing relatively well I am back upstairs.
How I try to switch things up though is when I am home working on things I try to change up my space throughout the day, and scatter in chores as I feel comfortable doing so. So I might drink my morning coffee on the front porch, and wash some dishes while binge watching shows.
However, most of all I needed to come to terms with being sick and what that means to me, and not beat myself up over it. I have to prioritize and find ways to get through life the best possible.