I've been saving up all of my ideas for posts for some time now, so look below to read all of the latest updates.
For today, I would just say that my constant state is that of being tired but wired. I have symptoms of narcolepsy a lot of the time. So I take medication for narcolepsy. It doesn't always work, so sometimes I take extra stimulants. Sometimes it works too well, so I need a depressant. But in general, I still feel tired, but wired. Not able to sleep (I've developed persistent insomnia). Not able to relax (I have frequent episodes of hypomania, with a need to get things done). But not really awake enough to be useful. I'm still so tired so much of the time. It may not seem like it, because that's how the medication works. If I'm talking, my brain switches on. If I'm listening, my brain switches off. So if I'm the one talking, I feel wide awake. But if I stop talking for some time, like when I drive, my mind tends to turn off, and I am prone to sudden sleep spells or constant yawning attacks.
Obviously, energy management is quite a science. I don't have it perfected yet, as I have chronic fatigue, and yet I seem to be awake until 3 a.m. every night, with the night hours being my most active, usually.
I've also developed an immunity to most sleep medications. Anything with Benedryl does nothing. Ambien does not make me sleep, however it does make me do strange things and then forget about them in the morning. But it doesn't help me sleep. On the other hand, I'm very sensitive to caffeine. I take a half of an excedrine (about 30 mg of caffeine), and it helps me stay awake for most of the day, when combined with 50 mg of Provigil. (Thankfully, Beverly from Dr. Grubb's office was able to help me get my Provigil re-approved, so I won't have to go without it!)
My whole personality is really affected by these drugs. I talk a lot...seriously, a lot. I zone out. I'm crabby. I'm giddy. I don't know if I'm asleep or awake. I feel that I am constantly almost asleep, except for the short bursts of energy I sometimes get.
But I'm still a really great actress. I'm sure most people I encounter on a daily basis are easily fooled by my peppy exterior.
In addition, being more active brings on significantly more pain. I'm to the point where I'm masking severe pain most of the day. So much so, that as soon as I am alone (like when I get in my car), I scream and yell to let out all of the pain that I've been holding inside. I sometimes need to yell or cry for several minutes, because of the amount of physical pain I've been hiding.
Then, there's the end of the day. At the end of the day, whoever is around to see me, usually my mom, is the unfortunate witness to the crash. I am in a horrible mood when I get home from work. I am always convinced that it has been the worst, most painful, most difficult day to get through, ever. So I always dread and fear the valid possibility that the next day will be even more painful and difficult. I'm in a pretty awful mood at the end of each day.
On the weekends, Gustavo is usually the one to witness the crash. I often sleep almost the entire weekend in Milwaukee. He has work to do, but I sleep. The laundry and dishes and cooking need to be done, but I sleep. I sleep, rest, and cry. I'm all used up by then. It's the end of the week. I've worked constantly, and hidden my pain all week. I've fought through the exhaustion all week. So, when I finally get to see Gustavo, when I should be able to enjoy myself, I usually crash. I just have nothing left to give at this point.
It's unfortunate, because I'm always in such a bad mood for the people I care about the most. It's just a side effect of "faking it" all day long, every day. The pain and fatigue and discouragement has to come out sometime. I'm so tired of living this way. And I wish I didn't have to be this way for my loved ones.
But no one can fake it all the time. There is always a crash. The downside always has to come out, eventually. And the more I do during the week, the happier I pretend to be, the harder the downfall.
So, no matter what medication combination is discovered to manage my energy just right, it is still very clear that this surgery is essential and urgent for my long-term well being. You can't fake your way through life. The body eventually gives out. I need this surgery in order to have a life. Until then, I will try to keep faking it. But, there is a point when you can't fake it anymore. I'll do my best to wait until surgery for that. You never know when it's coming. At some point, your body, and your will, just give out. I expect it to happen, and I understand that it will happen. When the time comes, I will know. I've been through it before, when I had to drop out of college. My body will make it clear that I need to stop working for a while and give my body all of the rest it needs. My current schedule can't continue forever. It's like running a marathon. It's an amazing act of strength and will. But eventually, you have nothing left to give. I'll hold out as long as I can. That's all I have to offer.
But if you see me, remember, I'm nearing the end of a very long marathon. I'm using everything I have just to keep going and to put a smile on my face for you.
I really hope this is close to the end. It would be nice to have the finish line in sight. I'm hoping that finish line is surgery in January. But then, we all know that this kind of surgery is really just the beginning of a new marathon, one of recovery! Maybe my time is getting nearer. The day when I won't have to force myself to smile. The day when I won't break down into tears over the severe physical pain I'm hiding. The day when it won't be so hard.
Courage is just knowing how to act like it doesn't hurt, smile through your sickest times, and pretend that you're not scared.
I can't wait for the day that I don't have to be so brave. But I will keep waiting, because apparently, patience is one of those virtues I'm supposed to really learn well.
