Introducing Ray, That's Me!

Hello, I'm Ray, a 34-year-old with a complicated body. I live with endometriosis, fibromyalgia, irritable bowel syndrome, restless legs syndrome (RLS), central sleep apnea*, and hyperthyroidism.

The doctors are currently trying to figure out what's wrong with my heart and a couple of other issues. Like I said, a complicated body. I am sharing my journey with you all, and to be honest, a lot of this is new, so you get to come on the journey with me. On that note, let's catch you up on some information.

Sleeping a lot as a baby

My mom used to say that after the first couple of days that I was born, she brought me to the doctor because I would sleep the whole night through. My older sister wasn't like that at all, so my mom was deeply concerned and thought something must be wrong with me.

The doctor told her I was fine; some babies sleep the whole night through, it's not abnormal. The ability to sleep the whole night through was something that lasted for a decade and something I miss terribly.

Sleep issues during my childhood

When I was around 9 or 10 years old, I started experiencing RLS and fibromyalgia. My mom just thought it was growing pains. When I was 11 or 12, I started having sleep issues. It would take me a very long time to fall asleep. I used to think it was because of my fear of falling asleep (Odd, I know – ties in with fear of death), but now I know that there was more to it.

Back then, I turned to mediation to help me fall asleep. I took a beginner's class when I was 8 years old. I would fall asleep meditating, which was way better than struggling for an hour or more. I knew my mom had sleep issues and RLS, and later in life learned she was treating it with alcohol.

Learning to manage my diseases properly

It turns out that when she started developing sleep issues at 8 years old, she got into her dad's alcohol to help her sleep. She continued to use alcohol up until she became sober a decade ago and, to my knowledge, has never sought medical treatment for either her sleeping issues or her RLS. Managing these diseases properly is something new for me.

Going to a sleep clinic

Flash-forward to November 2019 – I started having issues where my breathing wasn't always autonomic. After insisting to my former GP that it wasn't due to being stressed, he sent me to a sleep clinic. By the time I was able to get into the sleep clinic, the beginning of COVID-19 was happening.

Getting a sleep apnea diagnosis

They were able to see that sleep wasn't the issue, especially because I would have breathing issues in the day when I was awake. I was officially diagnosed with RLS and got the added diagnosis of central sleep apnea*.

Since then, I started treatment for my RLS, but nothing has happened about my central sleep apnea*. Now that I have a new doctor, I am hoping we can do something. In the meantime, I try my best to stick to the sleep routine and schedule that the sleep clinic recommended.

* Author's note: In October 2021, I reviewed the results of my sleep study and learned that in fact, I have mild obstructive sleep apnea.