My (Literal) Dark Night of the Soul

One night on vacation last summer I couldn’t fall asleep. It happened again a couple days later. In my groggy state, I noticed that my legs were sort of kicking when I tried to sleep. Maybe I had restless leg syndrome, I thought. A couple days later it happened AGAIN and even my arms moved a couple times.

We returned home, and I tried very hard to unwind before bed and go to bed on time. I slept fine that week, until it kicked up again over the weekend. I was up till 2 am with my legs and arm moving restlessly that night and the following. Sometimes it went on till 4 am! If I tried to take a nap the next day the same thing happened.

At first I got diagnosed with restless leg syndrome. Self-care prevention wasn’t helping, so I tried medication. I had a lot of side effects, including fainting. I was scared to go to bed because I never knew what side effects to expect and the symptoms weren’t under control yet either.

I saw a different doctor and she thought the RLS was caused by low iron. (My blood work results were “normal,” but the iron was at the low end of that.) Then I finally saw my actual doctor, and she didn’t think it was restless legs at all. And I realized I’d been describing it wrong. The movements were involuntary, not almost irresistible but voluntary motions.

This was about 6 weeks into serious sleep loss and I was desperate. She prescribed a different medication which, once we got the dose right, worked well. But she also wanted to look for underlying causes.

She ordered my third round of blood work, a CT scan of the brain and head, a sleep study, and a nerve conduction test/EMG (muscle test). Needless to say, now I was scared. I’m pretty nervous about health stuff in general; I tend to worry about the worst. And it took a long time to get the tests authorized by insurance and scheduled.

One by one I got my tests done. Everything was normal, except for the sleep study showing limb movements. I didn’t get those results until I was about to leave my neurologist appointment and it finally got faxed in. This was 3.5 months after symptoms began.

The neurologist basically just said you have hypnic jerks, which is a symptom, not a diagnosis. In light of all my test results being normal he said it’s benign and that the medication I’m taking is also “benign.” The medical community doesn’t understand what causes hypnic jerks when they happen once, let alone for hours on end.

What I learned from this experience:

• Medical tests are expensive. I learned how to compare prices using our insurance web site cost estimator and call center for imaging cost estimates. I saved $500 on the CT scan by driving to a location 1 hour away. Worth it! And the sleep study would have cost me $1500 more to do at a hospital than an independent sleep health center! I never knew costs could vary so widely for the same exact procedure.
• Moms need life insurance. I’m fine, but just facing the possibility that I might not be reminded me how important it is to have life insurance. Even stay-at-home moms need coverage; replacing what we do is valued up to $90,000! Think about how much it would cost to outsource childcare and household tasks like cooking and cleaning. Those really add up, and family and friends can only help out so much.
• Money is for now as well as the future. Whether it was take-out when I was too tired to cook, or having to pay lots of $$$ for medical bills, I couldn’t control our spending as I’d like to. There was no way around it. And that’s okay.
• Compassion. I’ve always felt for people with medical problems and how that could affect your finances and mental health. But now I have a better understanding of just how frustrating and confusing it can be to navigate the medical maze. I also have a better appreciation of how health problems and/or anxiety can impact every aspect of one’s life. For example, I became terrible at cooking! When I was in the throws of fatigue and anxiety, I would forget I needed to make dinner, I couldn’t think of ideas of what to make, and then I kept messing up the food I did make. Also, I had no energy or inspiration for blogging, which is why I went silent for two months here.

Our health is one of the easiest things to take for granted. Through this process I reflected on the fact that I don’t deserve to be healthy. I am thanking God that, while my symptom remains a mystery, serious disease has been ruled out and low-risk treatment is working. Things may not always work out so well, but I am trying to enjoy my health now and have better coping strategies when facing health problems in the future.

Have you ever faced a health problem? What did you learn?