A couple sitting in bed, the man is looking at the woman, who has her eyes closed and looks defeated

I Love You, but Will You Return to Work Please?

I would like to begin by saying I love my husband! He is my best friend and soulmate. We hardly ever squabble, and he is very understanding of my narcolepsy with cataplexy.

He has been on this journey with me from the onset of uncontrollable symptoms and through the difficult process of being diagnosed.

Adjusting to my narcolepsy diagnosis

When you first get your diagnosis and they prescribe you medication, it can take months, and sometimes years, to get it right.

You feel relief in the beginning; however, finding a semi-permanent regimen takes time. Once you get on a system or schedule, you start to feel like your world is coming together and things will not seem so difficult.

Managing my narcolepsy symptoms

I’ve had heart surgeries in the past, so I cannot take stimulants like other narcoleptics. I take a very small dosage when needed and I only take it when I leave the house. When I am home, I control my symptoms by scheduled naps and avoiding any triggers.

I have gotten pretty good at spotting things that I know will make me tired. There are certain types of TV shows that tire me easily. My time on the computer is limited, and I avoid information that might upset me. I don’t do much reading anymore, and if I need to research or read for an extended amount of time, I play music and make sure I am not in a silent area.

Keeping a routine

If my routine changes or we have visitors, my narcolepsy gets a little difficult, and it takes a bit of time to get back on track. I expect this and try not to let it bother me because I still want to live life and not be a hermit!

I realize that other people do not know that my schedule affects my quality of life. Missing a nap one day may not seem like it can change much, but it does! If I am not able to keep my schedule for more than 2 days, I will start to exhibit more symptoms and will struggle internally more than the people around me know.

My husband's extended time off work

This brings me to my wonderful husband and his extended time off work. We were in a car accident many months back and one of his injuries required knee surgery. Initially, he was only supposed to be off work a week or 2.

When the surgeon performed his surgery, he found a lot more damage than what showed up on the MRI, resulting in a much more involved repair. The expected 2-week recovery turned into 6 weeks and then turned into 12!

Not only was I surprised he would miss that much work, but I was also surprised at how much it has affected my narcolepsy.

I have a routine while he is away

He is a truck driver and is usually gone 5 days at a time. He leaves our home Monday morning, and I will not see him until Friday. During those 5 days, I have a routine I keep that I do not sway too far from.

When he returns on Friday, I go into struggle mode to keep up with him and I try to skip my naps since it takes time away from us. Monday comes along and I find myself sleeping the whole day, and by Tuesday, I can start to get back on track. I call it a weekend hangover without alcohol!

Losing my routine has a domino effect

His time home is wrecking my whole system! I am not going to bed on schedule, and my wake times are varying. This has a domino effect on my appetite, concentration, and cognitive abilities.

I get confused much easier and I feel like I have brain fog all day long. I have noticed that I need help with day-to-day activities that I am usually able to do myself. I feel tired throughout the day and much like I used to feel before my diagnosis. I knew a schedule was important. However, I didn’t realize how much my body depended on it.

My advice for other people

If you find yourself in a similar position, I would recommend not letting the guilt get to you and staying on your schedule as much as you can. He will return to work eventually, and I will start to feel more like “myself.” He might be sleeping on the porch by then, but hey... the weather is still nice!

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