Wow, I have been feeling like it has been a year since I posted on here, but it's really only been a couple of months. Excuses, excuses... but I miss writing, so here I am.
One of the most difficult things to deal with (in terms of Narcolepsy) is that sometimes people aren't really interested in understanding what this is all about. They just want me to be like them. I guess because the experience of feeling tired is a common one, people think it is similar.
But the thing is, if people learned more about Narcolepsy, it would make my life a bit easier. If they learned that I have been developing strategies to accomplish what I need to do, then they could work with me instead of just figuring I would be too tired to do something. This is difficult to write, because I'm trying to be too vague to spare feelings, on the off-chance that someone important to me finds my blog (not information I freely distribute). Let me be more specific. (Babe, if you're reading this, please read with an open mind and heart. I am just writing my experiences, because it could help someone else realize they're not alone.)
I love him so much, and I know he meant well, but sometimes my groom-to-be drives me nuts. One day he said that he ignores my Narcolepsy. He does have a tendency to ignore things that he doesn't know what to do with. I have a tendency to exaggerate, so I guess I don't make it easy for him to understand what I'm going through. I think he thought that Narcolepsy was a hopeless sentence to sleeping your life away. But the thing is, if he tried to learn about how I am coping with Narcolepsy, then things would be better.
So, for example, when I get up in the morning, I need to take meds pretty much right away to be able to have a relatively productive day. And the meds only work if I have gotten an appropriate amount of sleep. The catch is that I must stay relatively active, or I crash. So, I go to work, stay alert all day, have a short drive to his apartment and immediately, I still have the energy to do things. He likes to sit and relax after work (he's a teacher too). So, if I relax with him, I get really tired really fast. Once he has rested, he's ready to do something productive or fun, but I am way too tired to do anything.
If he stopped ignoring my Narcolepsy (which he has done), then he could let me know that he wants to do something a little later. I will know that I can't sit and relax because I will get tired. So, I can do something to keep my energy up. I can play with his mini-lop bunny (who just turned 1 and is extremely adorable), clean up around the apartment, work on wedding stuff, go shopping, or whatever. Then, by the time he is ready to do something, I am still going and not too tired. Now that he understands this, life is a little better. I think I will need to remind him of this trick from time-to-time, but I am glad we are working on this now.
I don't even think I realized that keeping busy was one of my coping strategies until I had this talk with him. I wonder what else I do to stay awake (besides eat and drink coffee and soda).
Thinking about it a little more, maybe he thought I was using Narcolepsy as an excuse to avoid things. I guess it might be difficult to understand the difference between excuses and explanations sometimes. I am not even sure I always understand it myself.
Like, in the same scenario as above, maybe he wanted to do something and I said that I was too tired. Maybe after a while of hearing me say that I was too tired to do things, he may have asked why I was so tired, or implied in some way that I'm tired too often - more to vent frustration about being unable to do stuff than anything else. My response of "I have Narcolepsy" may sound to him like I'm excusing my behavior away. But really, I am just trying to explain how things are different for me. I'm tired a lot... a whole lot. It doesn't have to be the end of all fun. But it does make me different from most people. When I say, "I have Narcolepsy," I just want you to be understanding and patient with me. I am not saying that you should give up hope of me ever doing anything again.
Ok, sorry. I was thinking "out loud." Not sure if any of that made any sense to anyone but me. Hope I didn't hurt the feelings of my super-supportive fiance. When we communicate well, we are the perfect team. Done rambling for now.
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