One of the most difficult things to deal with, while battling ALS is the incredible mind-fuck (Sorry, I never promised you a PG rated blog) it can cause from time to time. Early on in the diagnosis, it always seemed to me that the more active I was, the more strength I had and the better both physically and mentally I felt. At the time it seemed to make sense. I was still fully functional with just some diminished strength and some modest fatigue. During those early days, I was still doing yard work and other work around the house. The work was a bit more difficult for me to do, but I was able to do it. Usually, I paid a moderate to heavy price the next day. The following morning after doing work I would usually have just enough energy to get myself out of bed and onto the couch. Emotionally, I would often feel good that I was able to accomplish some work the day before, but physically I would often feel like crap. For this reason, my clinic team (that's what they call themselves, I guess it makes them feel important) has consistently told me since early on in the diagnosis that I need to limit my physical activity and conserve my energy and strength. This, of course, has been a continuing point of contention between me and my clinic team.
Even though I am now able to do far less than I was able to do even a year ago, I still seem to increase my strength and energy with the more that I do. The hard part for me has always been, and continues to be, getting going in the morning. Getting me to start my day is like trying to start an old Chevy Nova on a cold winter morning. Almost impossible to get going, and when you finally get it started, it takes forever to get out of first gear. Some two years later, as my functioning level has significantly decreased, this phenomenon has continued. What has become almost a common occurrence for me every morning has been a conversation with me where I continue to tell myself to just get up and get going. I keep reminding myself that I will feel better and stronger as the day goes on. Although I know this to be true, on most mornings, I cannot find the strength or energy to get myself out of bed. For comparison purposes, imagine yourself trying to get up every morning with the worst case of flu you ever had, without the fever. If you can just imagine the aches and pains, the soreness, the fogginess and cloudiness in your head and then multiply the fatigue by about 10 you'll have some idea. Many is the morning, where I have managed to get my feet over the side of the bed to sit up, just to fall back down in the other direction, with my head now at the foot of the bed, because I was too tired to sit up, let alone stand up. Additionally, it has always seemed to me that when I get six hours or less of sleep a night, I am more alert and have a better ability to function in the morning. Unfortunately, on those days, I am usually done for the day by two or three o'clock and end up taking a 90 minute or so nap just prior to, or following dinner.
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| On LBI |
Last week, I had hoped things would have been slightly different. Tracey, I and the girls, spend a week at my in-laws shore house down at LBI (for anyone not from New Jersey the translation is a beach house on Long Beach Island). The initial thought and hope was that I would go to bed early, sleep late, do little next to nothing, and would therefore become relaxed, refreshed, and rejuvenated. I had already chronicled my adventures on the trip down to the shore (Post 8 -George, …I Mean Darin is Getting Upset, posted on July 30) so I will not go into detail regarding the preceding events, however, I will pick up from that point. That Friday, I did exactly as I expected to do, which was nothing. I went from bed, to chair, to couch, back to bed, back to chair, so on and so forth, until back to bed for good. It was great! The plan for Saturday's was to go to the beach for a little while and then Tracey and I were going to go out for dinner to celebrate our wedding anniversary and to see a friend's band that was playing on LBI that night. Unfortunately, I had almost no strength or energy on Saturday. With Tracey's assistance, I was able to get dressed for the beach and get out the door. Throughout the day I was barely able to lift my arms, or move my legs. Attempting to walk on the sand was a whole another adventure that I will chronicle at a later time. We ended up canceling our plans for Saturday evening because by the time we got back from the beach, I had no energy.
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| Storybook Land |
As the week went on, it seemed the less I did, the less I was able to do, and the more tired I would become. I was a little surprised by how I felt because for the first time I was completely resting my body as opposed to just taking it easy. I truly expected the opposite, and that was to have more strength and energy. Finally, by Tuesday I had had enough. Prior to going to the shore, Tracey and I talked of bringing the girls to Storybook Land, an amusement park about 20 minutes outside of Atlantic City. It took every ounce of strength, energy, and motivation to get myself out of the house, but I wanted to do something fun with my family. By the time we got to the park and I started to walk around, I could feel my strength and energy increasing. Although I did start to get tired by the end of the day (about three hours) this was still the best that I had felt so far on our vacation. Needless to say, on Wednesday I was almost totally incapacitated and had a carbon copy day of the previous Friday.
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| Fantasy Island on LBI |
Okay, now I'm finally ready to make my points regarding one of the most frustrating aspects of this disease for me. First, it appears as though I have two choices. I can continue to move along at half speed, and that way, hopefully have something left in the tank for the next day or I can go full speed and take a day or two to recuperate. It is clear to me that it is not an option to just sit around for days and try to save or store up energy as it appears my clinic team would like me to do. I do not see any physical or emotional benefit to this philosophy. For me, it appears as though it simply does not work that way. Regardless of which option I choose, I still have to face the daunting task of getting up in the morning, going through a daily routine, and getting dressed. This is no small task for me. Based on past experience, the best case scenario would be to sleep for about five or six hours, get up and go full tilt. However, that is not a good choice for even a healthy person, let alone me. Therefore, it would make no sense for me to do that, but yet, that would be a day when I would be at my best. Unfortunately, it would catch up with me about 12 hours later and knock me on my ass for the next two days. What to do, what to do, what to do? Either way, I am left to sit, wonder, contemplate, analyze, re-analyze, over-analyze (this is what I do best) what is the best way to fight this fight, for me and my family. The fact that there is no answer frustrates me beyond belief. After all, the tortoise has already taught us that slow and steady wins the race, but yet, for some reason, to me, that seems like giving in.
On another note, I did have a few vodka tonics while at the shore with no adverse effects. Additionally, I had a couple of gin and tonics last night and the cramping was definitely more pronounced. Obviously not a big enough sample size to draw any conclusions. The great experiment continues...
Also, our recruiting continues for the ALS wing fighters. To date, we have over 20 people signed up to walk and have raised over $1800. We are currently the eighth highest fundraiser, out of approximately 50 walking teams scheduled to walk this coming November. Our goal is $5000. So we still have a ways to go. Thank you again to everyone who has already signed up to walk and/or made a donation. Remember to keep hitting up, your family members, friends, coworkers and neighbors to support you in walking. Your participation and support is greatly appreciated. If you are interested in learning more about our walking team, would like to sign up to walk and/or make a donation, please check out the ALS Wing Fighters link to your right.
One day at a time big guy!!
ReplyDeleteThe photos are great! Your girls are adorable!