Chronic illness and icebergs

What do these two things have in common?

And if you have said this, you don’t know what hypocretins are. #educateyoself
Accurate. For many, I’m sure.


First, my realization that narcolepsy had turned into this cold, lonely, and heavy weight attached to me. And second, there’s a whole lot I don’t want others to see in regards to how much I’m struggling with this darn thing. At my follow-up appointment with a new neurologist in February, I told him that while I had thought a regular routine and schedule would reduce my symptoms, I was moving in the opposite direction the farther I got in my internship. I was looking for help; I told him I want to be working, I want to be doing something I love, and I asked for more behavioral-type coping skills I could do, a change in medication, something. I just wanted to be better, because even at this point, I could see what I was doing would not be sustainable in the long term. What I got out of his response was that he wanted to help me, but I had to remember that narcolepsy is a lifelong condition and I essentially may be as good as I can get. Oh, and if I thought seeing a therapist would help, he would give me a referral to a therapist, if I found one for him.

The gravity of “chronic” suddenly hit me, and I left that appointment in a slow fog. Literally, because I was having to avoid any emotion and count my steps to keep myself moving to the car, and dragging this big ‘ol iceberg was not helping.

1, 2, 3, 4. 1, 2, 3, 4.

When my thoughts drifted from counting, I’d feel the familiar buckle and wobble in my knees. I took the elevator instead of the single flight of stairs, and the normally 3 minute walk from the check-out desk to my car took closer to 10. When I had finally made it into my car, something great happened: I broke down. I melted and I cried and cursed and hiccuped and wallowed in my self-pity for a good 20 minutes.

Why was this great?

I hadn’t been able to cry for months because the emotion that comes along with tears and puffy eyes was apparently too much for my cataplectic body to handle, and whenever I would come close, I’d wilt into “numbness” (cataplexy). Basically, I’ve got no emotion (or movement) for however long my body decides it needs. Might be 10 minutes, might be 2 hours. Either way, I give no shits about anybody or anything during this time, which one might think is good, but you’re just avoiding the problem, and so it keeps building under the surface. Each time I tried to address it, my body was like “nope. can’t handle. TIME OUT.” I’ve been building an iceberg, and maybe I chip off a chunk or warm up a minute amount when the sun is particularly strong, but I’m still sitting in the arctic. Each time I couldn’t deal with what was happening to me, the submerged part got a little bigger and a lot heavier; all of these emotions to deal with and my own condition was suppressing them.

Now, bear with me, because I love me some metaphors and also, I learned a lot about icebergs during this – takeaway: icebergs are super interesting.

THIS IS SO COOL and there’s more

So, when you have turned into an iceberg, how does one expose the 90% of you chilling underwater?

The answer is that you don’t. Well, technically you could if you can flip the iceberg over. However, I would not suggest that seeing as 1) it takes a whole lot of work 2) it can release the same amount of energy as an atomic bomb (what the hell?) and 3) you’re still going to end up with a majority of that thing underwater.

For a long time though, that’s what I’ve been trying to do. Flip the iceberg. I thought that if I could just try a little harder, accomplish one more thing, or go just a little longer acting like I wasn’t as tired as I felt, I could flip this and get myself back.

It’s not going to work like that for me though. I don’t need to flip the iceberg, I need to not be an iceberg. Duh. You know what an iceberg normally does? It just goes along its merry way, floating through the ocean, soaking up some sun, riding the waves, and generally moving toward warmer waters. And as it does, it gets bopped around, loses a piece here or there, and melts until it’s a harmless nugget called a growler, and eventually it’ll completely melt. It’s still h2o, no matter what it looks like, so to me, melting is fine in this situation. (Note: Climate change & global warming is something I am not ok with – giant glaciers melting and falling into the ocean and such, not cool. Tiny hunk of ice just doing it’s thing, ok.)

In English, what I’m saying is that I’m done fighting and building my big, cold narcolepsy iceberg. Acting like I’m ok and getting better when I’m not (yet) is only more draining for me in the long-term.

Tropical paradise with turtles:
Probably won’t end up in Hawaii, but go big or go home, eh?

I mean, I’m trying to undo over 2 years of chronic sleep deprivation, so that requires some patience. But instead of putting up the facade I’ve perfected, I’m finally allowing myself to just be “sick.” Of course, there are instances where this isn’t feasible, but for the most part, I’ll feel what I feel. It’s not going to be easy, because I am normally a very active and on-the-go kinda gal, but the truth is that I am a whole lot of tired, a whole lot of time. I’m going to try and think of this time like I’m stopping to smell the roses (or, take a nap at the roses, whatever), see what opportunities I can find with my slow journey, and trust that the current is moving me toward warmer waters.

4 thoughts on “Chronic illness and icebergs

  1. SSRIs (a class of antidepressant) have decreased cataplexy a lot for me. My knees may buckle, but I don’t collapse. Wellbutrin (another kind of antidepressant) helps with cataplexy and gives me a little more energy without increasing stimulants.


    1. To answer both of your comments – this was partially about something that happened in February, when I was ( briefly) taken off of the antidepressant I’d been taking for cataplexy. Not a good move, and have since changed that. To the question, while I’d rather not say if I am or not, I will say that I’ve heard this as well. From what I’ve gathered so far, it also takes anywhere from 2 – 6 months to really know if it’s going to make a difference for you. Do you mind me asking if you also have narcolepsy?


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