Family Frenzy

My parents are here. Generally, that is a good thing, but this evening, my mother won't stop moving. It is great that someone is doing all of the cleaning, but I wish she could let herself relax. I must admit, however, that I am feeling minimal guilt about the situation. In the past, I think I might have tried to compete with her, but the reality is that I did WAY more than my share today. I had to do that and was proud to be able to help out, but making my kitchen spotless is simply not in the cards for me tonight. If my mom feels compelled to do it, more power to her. Actually, her actions confirm that I need to talk to her about her mental health, but that is a discussion for Duluth in a few days, or during a quiet walk next weekend.

Beyond my mother's manic antics, the day has been another eyeopener for me. I awoke this morning knowing that my wife might need me to do the shopping for our second Christmas. We had our own yesterday, opening our presents to each other and the ones from my wife's family. But, with my parents arriving last night, today was the celebration with them and my sister and her husband. Given that my wife had done virtually everything in the house during my medication holiday, I was more than willing to pick up some of the slack. Sadly, my wife needed way more from me than just some shopping. She has a stomach bug and spent the entire day in bed, other than a couple trips to vomit and a brief appearance during the gift exchange. My wife rarely gets sick like this, and part of the reason is that she abhors vomiting.

Thus, as I left on my shopping excursion, I knew I was likely doing the cooking today too. I chose again today to only take 10 mg this morning. I felt alert while driving and even decided to hit the 50% off sale at Target before getting the groceries. I got some great stuff there, then picked up some prescriptions, and finally hit the grocery store. All in all, my quick trip turned into a three hour adventure. I arrived home to a sicker wife and guests who might arrive at any moment. I got stuff put away and started cooking. My mom helped, and when my sister arrived, so did she. We eventually got everything prepared, and I took my second dose of 10 mg at 2 PM.

It blew my mind that I did all of that with only 10 mg of amphetamine. I know that I tend to respond well to "crisis" situations, but I am positive that seven days ago, 10 mg of amphetamine would have put me to sleep even if my house was on fire! This medication holiday thing borders on the miraculous. Granted, I was basically done for the day at 2 PM. Even with the second dose, I was exhausted. Still, I managed to be social and functional for the rest of the day. Since it is likely that I will be doing the driving tomorrow, I will need to consider 20 mg instead of 10 mg in the morning, but we are leaving at 1 PM, so maybe I will take 10 mg for the first dose and see how I feel. I know that my doses will need to go up when school starts again. I also know that I will definitely continue to take medication holidays. Now, if I can just find a way to stop having my mom do work!

Merry Madness

I ended the medication holiday this morning. I didn't get out of bed until 9 AM, but part of that was waiting for my daughter to get up. How cool is it that my daughter was the last one to wake up on Christmas morning? I have a super cool kid. We had to wait to go out to the kitchen and living room because our daughter wanted to see our reactions. Apparently, she decorated from midnight until 2 AM. It was impressive! She made a wonderful banner and set out ALL of her stuffed animals. So, I took my first dose of amphetamine at 9 AM.

The most amazing thing, though, is that I only took 10 mg. I did take a second dose at 3 PM, but once again it was only 10 mg. I know that I would have needed more if I had been teaching today, but I love that the medication holiday worked well enough that I could take a third of my typical dose and feel highly functional all day. We had a glorious time opening gifts this morning. We then got going on work. My wife did nap, but I managed to keep going throughout the afternoon. I washed dishes, cleaned the bathroom, put a number of things away, and even organized a huge pile of stuff that has been sitting around for months. The work was spread out over hours, and I made sure that I did not overdo anything. Still, I am stunned by my level of productivity.

The best part of the day came this evening. My folks are in town and arrived around 9 PM. I was still finishing up some of my sorting, but it was awesome to talk to them. My sister and brother-in-law also decided to hang out for a while. We will all be together again tomorrow for a second Christmas (yippee). More than anything, though, it was super cool to connect with my parents in a relaxed way. I also got the chance to show my dad number of things on the computer - TED talks, iTunes U, Radio Heartland, and the final broadcast material from MPR's Morning Show. He was stunned, and I was thrilled that I provided him some meaningful items that he will truly enjoy.

I need to get to sleep, but it was a great day. I was already pleased with my medication holiday, but the realities of today clearly proved that I made a brilliant decision in taking the time off from my amphetamine. Clearly, the break from my stimulant has helped my body in a number of ways. Best of all, I know that a third of my normal dose gave me plenty of energy. It is incredible to learn that a brief respite from my regular routine can have such a drastic impact on functionality.

Faithful Fatigue

When I got out of bed this morning (I hesitate to call the experience "waking up"), I was convinced that day four would be far worse than day three. The extreme effort of feeding three cats left me exhausted for the next hour. I eventually stumbled to the living room and promptly slept for the next hour and a half. Finally, I forced myself to shower around 10 AM. My wife and daughter had dental appointments at 11 AM. I didn't fall asleep in the lounge and did hang in through the other errands. Lunch was good too.

Then, at acupuncture, I was convinced I would fall asleep. I often hover in a near sleep state, but was positive that my body would simply give out today without the stimulants. Interestingly, I found my energy growing throughout the forty minutes that the needles were in me. Some of that might have been the electricity surging into the four needles in my lower legs, but that is not something new. I have been functional enough the rest of the day that I wonder if I have turned a corner on the withdrawal aspect. Certainly, tomorrow will be what it will be, but it is fascinating to ponder how all of this is impacting my body. I also must admit that part of me wishes I could stop the stimulants and just have an acupuncture treatment each morning. Of course that would be impossible, unless my amazing wife wants to spend two years learning how to be an acupuncturists on top of being the best medical writer and editor that I know (or that most, if not all, of the doctors who work with her know as well). The chiropractic appointment after the acupuncture also seemed to help.

That being said, it is incredible to realize how sleepy I truly am. Narcolepsy truly is a stunning condition. I know that my Xyrem doses knock me out at night. I get as good a sleep as I can most nights. That means that even with a chemically induced sleep, something is so out of whack that I remain exhausted for a majority of every day. It is humbling to be this dependent on drugs, but it is also good to understand what my body can and cannot do. As I continue to learn more about my condition, it will be fascinating to see where I will go and what life will bring me. Perhaps I will some day be one of those incredible PWNs who does not take stimulants, a person who is comfortable doing what his body allows rather than one who pushes himself to the extreme.

It will be cool to see what tomorrow brings. I need to go to the dentist at 10:30 AM. We also have a few more errands to run. Plus, we need to go to Mass at 4 PM. My daughter is singing in the pre-Mass caroling. I hope that I have a little more energy than I have had the past few days. At the same time, whatever I can muster will be just fine. I have no delusion that I will miraculously "recover." I also know that if I am even more wiped out, I will simply accept that. I have no ability to control the situation. It will also be good to recognize what five days without stimulants is like. That way, I will have more insight for the next medication holiday, which I hope will be similar in length. Who knows, I might even be able to do it during my spring break. I definitely am hoping that I can take a break for at least a week during the summer of 2009.

Missing My Meds?

I am on day three of my med holiday. I actually posted it as my Facebook status and a number of PWNs commented. One of the best responses was, "why can't med holidays be as fun as they sound?" On one level I completely agree, but another friend posted that lazy days watching movies aren't all that bad. I certainly see that point too. Since this is my second attempt at a med holiday, I am still learning what they are like. I know that it is the right thing to do for my body, but I also know that day three was definitely tougher than day two. My first attempt in August was only two days long, and I knew that I would have some functionality during the first day, but that the second would be difficult. Sadly, I actually thought that day three might be better. I was wrong.

I have spent the day feeling physically ill, which I know is the withdrawal. It is amazing how even a theraputic dose of a medication can alter your biological baseline so drastically. I can't even imagine how hard it must be for an addict to get off of a drug. The other difficult aspect of the day has been my inability to stay alert for more than 30 minutes at a time. I have managed to do a few things around the house, but I have also crashed repeatedly. Some of that is also the withdrawal, but much of it is "untreated narcolepsy." I am humbled by how dependent I am on my amphetamine. Could I live without it? Yes, but I would not be able to teach - not even part-time. I also have spent the day wondering what it would be like to try driving like this. I have no intention of trying to do that, but it is frightening to realize that without my stimulants I could be completely dependent on others to transport me places.

The other side of that, though, is a gratefulness that I am able to use stimulants to have some level of functionality. I have a number of PWN friends who are unable to drive or work even with stumulants. Others can't find a stimulant that will work or that their bodies can tolerate. The insidious nature of this condition constantly stuns me. I am blessed that my narcolepsy has not completely undermined my life. I realize that it is all a matter of perspective, but I definitely know I would be struggling more if I had to let go of even more of what I "want" to do. Yes, I have lost much, but I am still able to do a job I love and help my family and my friends.

Of course, I certainly recognize that my narcolepsy can progress. Perhaps in another year or two (or month or two), I could reach a point where driving or working will not be possible. I hope that I will be able to accept those things with the same day-by-day approach that has allowed me to remain upbeat during the start of this journey. While I hope those things never come, I understand that much of that is out of my control. Narcolepsy will run its course. I just hope that I can maintain my own ability to accept what the disease brings and then make my own path and decisions.

Tomorrow will be fascinating because I have an acupuncture appointment scheduled. It will be the first time that I have acupuntuncture without a stimulant in my body. Even when I did acupuncture the first time (in 2005), I had methylphenidate and Concerta in my body. And, when I went off all of my meds before I got my narcolepsy diagnosis in 2007, I was going to Langford Chiropractic, but had not started acupuncture there yet. I am not sure if I had any acupuncture during my unintended med holiday last December - when Provigil became a non-option and I had no other stumulant. I will be interested to see how my body responds without the amphetamine.

I guess the final thing that has intriguied me these past three days is the fact that some PWNs do not take stimulants. Some don't need to take them - Xyrem does the trick on its own. Other, though, willingly forgo them. I can't do that, yet. I still want to work at my job. But, it is interesting to consider what I might be able to do without a stumulant. I know that once the withdrawal aspect ended, I would be more functional than I have been these past three days. The question would be, though, how much energy would I have? Perhaps the time will come when I can explore that. For now, I like the idea of stopping my meds for a time, then starting again. I know the amphetamine felt more effective after I did this for two days in August. It will be interesting to see what happens with my longer break this time. It is interesting that although I could not "feel" the effect, I definitely know that the amphetamine was working in DEcember because without it, there is no way I could have made it to work each day.