I have been writing for over 2 months now, and I have covered numerous topics and told you a lot about my life during this time. I recently realized however, that there was a missing piece to the picture I have painted for you. I was talking to a friend last week about how busy my day had been, and as I was telling her this story, I realized that she was not getting what I was saying. After asking her why she was confused, I found that it was not that she was confused about the story, she just had no idea what life is like for me as a disabled person. She could not see things from my perspective by doing “mental optometry,” because she had no clue about my daily life and my routine that is so different from the average person’s. This is what made me realize that you probably were in the same boat, and I feel like for my words to have the greatest impact, that you need to know where I am coming from. So in order to fill in this gap in our shared understanding, today’s post is a running commentary on a “typical” day in my life.
My day nurse comes on duty while I am still asleep. After the night nurse gives a report as to how my night went and watches the oncoming nurse count my narcotics, the night nurse leaves.
I wake up in extreme pain. My right knee feels like there is a knife in it, my left shoulder is throbbing, and my right hip is on fire. I call for my nurse through a baby monitor and request pain medication (dose 1). I tell the nurse that my lifter is coming at noon, so to start my morning routine at 10:00a.m. I try to go back to sleep until then.
My nurse wakes me up to start moving around to begin my day. I take a nebulizer treatment of albuterol to open up my lungs, and then clean the area around my trache tube and apply prophylactic, antibiotic ointment to stave off infection. Even though I am still in a lot of pain, I have to move around to get dressed, use the restroom, and wash up. I do a quick bed bath and put clothes on, while trying to move as little as possible to keep my pain to a minimum. By now it is usually about 11:00a.m., and I request another dose of pain medication (dose 2). Next I have to clean and dress an open wound I have been dealing with for almost a year. Having no muscle or soft tissue makes my skin tear easily, which makes me susceptible to wounds on my pressure points. After probing the open sore for depth, measuring its diameter, assessing its color, and packing it with a medical cloth material, we are finally through that daily dose of torture. To finish my morning routine, I now have to receive 20 – 30 minutes of chest percussive treatment to clear any potential mucus plugs in my lungs.
My lifter arrives on time, and they and my nurse transfer me from my bed to my wheelchair. It takes me about 15 minutes to get situated and strapped in before I can sit up. I wash my face and pull back my hair and move out to my living room for breakfast.
My nurse makes and feeds me breakfast. It could be anything from cereal and toast to bacon and eggs to French toast depending on the day. I eat while my body tries to loosen up for the day. After breakfast, I take my morning medications. This consists of morphine and hydrocodone for pain, droabinol and megastrol for appetite stimulation, and modafinil to alleviate the mental fog caused by my pain killers. After brushing my teeth and using my mouthwash, it is usually around 1:30p.m. I take another dose of fentanyl (dose 3), and then get on my Kindle to do some work for www.scottdrotar.com and Roll Models.
I am working, and I feel my lungs starting to fill up with mucus secretions, probably because I aspirated something during breakfast. I drop what I am doing, hoping that I won’t lose my momentum and train of thought, and my nurse does a suction. This involves feeding a sterile tube down my trache into my lungs to suck out the secretions. Yes, it is as gross and uncomfortable as it sounds, but it keeps me alive.
I have been working for a couple of hours pretty productively. All of this productivity though has meant that I was moving my body a lot, and as a result my pain has spiked. I want another dose of fentanyl, but I also need to eat again and have to take fentanyl at least 45 minutes prior to eating, so I just gather my strength and push through. No matter whether I am at a good stopping point or not, I stop working and eat a quick snack, like yogurt or a sandwich, and then at 4:00p.m. my evening nurse arrives. After both the day and evening nurses watch each other count my narcotics again, they transfer me back into bed to give my body a rest.
Once in bed, I do another 20 – 30 minutes of chest percussive treatment to clear my lungs. I then get as comfortable as I can, take another hit of fentanyl (dose 4), and meditate for anywhere from 20 to 60 minutes depending on the day. I then either nap if I’m tired or brainstorm ideas for posts and talks.
My nurse comes in and gives me another round of albuterol. I use the restroom, try to loosen my body up again after lying there for so long, and take another dose of fentanyl (dose 5).
My lifter comes in, and they put me back into my wheelchair. I gingerly loosen up my body and move back out into the living room. I check my email, social networking sites, and watch television while I wait for the fentanyl to be gone so I can eat dinner. I finish eating and get situated for my “work day,” which generally is a period from 8:00p.m. to almost midnight when I generally get the most done.
I am going strong and have written a post or practiced delivering an upcoming talk. It is time for another dose of fentanyl (dose 6), and at some point every evening I end up needing a suction.
In order to get everything done for the website, Roll Models, and my life, I have to keep working, but I also have to eat again to make sure I get in enough calories for the day that I won’t lose weight. I usually have some kind of desert, since they are very calorically dense, not to mention tasty. I continue working as my nurse feeds me.
I continue working as my nurse brings over my nightly medications. This consists of morphine and hydrocodone for pain through the night, prilosec for ulcers in my stomach, flexiril to help me sleep, and cathartics to keep my bowels moving in spite of the binding effects from all of my narcotics. At 11:45p.m. I take another tablet of fentanyl (dose 7).
My night nurse arrives, and once again both nurses double count my narcotics. Whether I am ready to stop working or not, I have to stop so they can put me in bed before my evening nurse leaves. So, I hurriedly get to something resembling a stopping point, and they get me into bed.
After the night nurse gets settled in, we begin my nightly routine. This starts with 30 – 45 minutes of chest percussive treatment and another albuterol breathing treatment. I then get undressed moving as little as I can, since by this point in my day my body is pretty sore and “angry” as I like to say. I then attempt to have a bowel movement, which takes a while due to my weak muscles along with my painkillers causing constipation. I usually have to devote about 2 hours to this. During this period around 2:00a.m., I will request another dose of fentanyl (dose 8).
I wake up in pain and take more fentanyl (dose 9). Depending upon what parts of me are hurting, my nurse will reposition me to try to alleviate some of my discomfort. After struggling to find a comfortable position for as long as 45 minutes sometimes, I finally get back to sleep.
I awaken again in intense pain and take more fentanyl (dose 10 which is the most I can take in a day). After fighting once more to get comfortable, I fall asleep again until my day nurse arrives again at 8:00a.m. to do it all again.
This is a typical day in my life. I am not sure just reading about it gives you a complete picture of what my day to day life is like, but it is a good start. There are a few things that I think are worth pointing out. First, and I have discussed this before, but my daily schedule is tightly fixed. I lift when the lift is scheduled whether it is convenient or not. I also want to point out the large chunk of time I lose to issues relating to my disability. Between my morning and nightly regimens, taking medications, suctioning, chest percussive treatment, and such, I lose about 6 to 7 hours every day. When you add that time to roughly 2 hours for eating, 2 hours for hygiene and daily care type stuff, and 7 hours for sleeping, you get around 19 hours a day. That only leaves me with 5 hours for work and trying to have a social life. Now, sometimes I can double up certain tasks to gain a little time by say rehearsing a talk while doing chest percussive treatment, but even on the best days I will only get at most 8 hours of productive time. When you throw in the fact that this time is constantly being interrupted by fentanyl doses, suctioning, and the like, you can see how the time I have for my life disappears pretty fast. It should also be pointed out how much of my day is governed by my pain. Not only do I have to function through the pain, but I also have to carefully manage how I take my 10 doses of fentanyl during the day. If I take too much early in the day, then I won’t have as many doses left for the evening. Every time I take a dose I have to think whether I hurt badly enough that it is worth one of my doses. It is really hard to forecast how much you are going to hurt later, especially when you are hurting already.
After reading this, I hope you have a better understanding of how my life looks day to day. I was trying to illustrate some of the more indirect ways that my disability complicates my life. Yes, it is tough and finding enough hours in the week to get everything done is pretty difficult, but I always find a way to make it happen. Even more so, I love my life and would not trade it for anything. I have found a way to be happy and successful despite all of these difficulties, and I cannot ask for much more than that. I have accomplished this thanks to my amazing family and friends, and also by using all of the tools and techniques that I share with you through Roll Models. I hope this not only illuminates some of my other posts, but also causes you to stop and think about your own life and routine. Regardless of whether your life is extremely busy or more easy going, I hope you at least pause to make sure you are using, enjoying, and appreciating all of the time you do have, because life is way too short to waste even a second of it.