Rare Disease Day - 2022


My first blog post...and I write about myself! I wasn't planning my first post until later this week, but since today is Rare Disease Day and I will be recognized on The Academy SPS Facebook page tonight (for a different reason!) I thought this would be a perfect time!


So what Rare Disease do I struggle with? Type 1 Narcolepsy with Cataplexy. About half of the people I talk to say they know someone with it, but just in case you don't, I will give a brief description. Basically, if I am not on my medication, I can fall asleep anytime, anywhere! Sitting at a stop sign while driving (not while actually driving unless it is longer than a 30-minute drive), watching tv, reading, or pretty much at any time my mind isn't totally stimulated, and even then it’s not guaranteed. These moments of sleep could be from just a few seconds to 15 minutes to a couple of hours. I was 22 when I told my doctor I wanted to be tested. I thought I might have Sleep Apnea since I found out my grandfather, two uncles, and cousins on my mother's side of the family all had it. Found out that wasn't the case. When I started my medication, a whole new world opened up. You know, the commercial when people take their allergy meds for the first time or get glasses that clear up? Their vision is the exact same feeling I had. Thinking back, I may have had this disorder as early as 15 years old.


So now you are wondering what Type 1 with Cataplexy means. Cataplexy is when you lose muscle strength in limbs. Some people fall entirely down because their knees give out. For me, when I laugh really hard, I cannot grip a pen for about 10 minutes. It sure sucked when I was in school, and I couldn't take notes or finish a test.


There is another symptom that can come with Narcolepsy, and that is sleep paralysis. This is when our mind wakes up, but we cannot move our limbs, head, or even speak. I can be there hearing everyone and everything around me but can't do anything. It may last 5-20 minutes, and then our body wakes up, and all is fine.


So what do I have to do to manage it? Two different medications in the morning and afternoon, a 'power' nap 1-2 times a day (makes a huge difference if it can be done daily), and a nighttime medication called Xyrem (say the 'x' as you do in xylophone). It is very high in sodium; imagine sea saltwater & cod liver oil texture mixed! This medication is so potent that it has to be sent via FedEx by the manufacturer and signed for by someone over 18! It is mixed with water and taken before bed and 4 hours later. This means a routine daily bedtime. The other thing that can help a lot is watching my energy levels and maintaining my brain usage. I have learned Thursday is the day of the week I need to take it easy, and if I don't (as I didn't last week), I will be super tired like you see in the picture above! I haven't been getting to bed at a reasonable time since I am launching a blog today, a VA Think Group next month and modifying my VA services to add on coaching services. I haven't been getting to bed at a good time, not taking my night medication because of staying up too late, and overthinking on the days I shouldn't be! But I will prosper and tell myself, Wednesday, I can rest....well at least that is what I think because of course I am behind verifying my calendar for the week!


I have a picture of what it looked like with the equipment on for the testing but will have to find and add it at a later time.

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