Part I
Sunrise is still a few hours away. Though the full moon has set far enough that the Rocky Mountains hide it behind their backs, its light is still so bright that I can see well enough to walk without a flashlight to the toilets down the road from my campsite if I need to.
Sunrise is still a few hours away. Though the full moon has set far enough that the Rocky Mountains hide it behind their backs, its light is still so bright that I can see well enough to walk without a flashlight to the toilets down the road from my campsite if I need to.
I do need to, but I don't want to move because any movement is painful. Imagine how it feels to have a tooth drilled by a dentist who does not give the patient a local anesthetic first. After the drilling is done, which is a pain all its own, the kind that ought to shatter the jaw it is so violent, yet somehow doesn’t, the other teeth, the gums and jaw all around it vibrate still with an icy cold ache that also sears, that erodes any consciousness of anything else. My back feels like this. Like something bored into my hips and spine while I slept then stopped, and now, as I lie there, awake, my lower back throbs with a pain that has steadied into one, continual, throbbing pain. To rise from this army cot and climb down from the back of my minivan would require that I move those painful muscles and bones, which I can't do yet. I lie perfectly still, breathing slowly and deeply, hoping the pain will pass. It doesn't. By the time the first light of dawn softens the dark sky into a lighter purple, then blue, I am still lying there, in pain, trying not to move, and definitely not sleeping. I give up. The cold mountain air seeps into my joints as I zipper my way out of the sleeping bag, slowly, carefully. My body feels as though the air has settled through the skin to the bones, pulling the ligaments and tendons into a stiff, uncooperative mass of dull, throbbing knees, hips and shoulders. Stiffly, I push up from the cot to a stooped, sitting position and unlock the minivan door. I climb out and limp the short walk down the road to the bathrooms with the slow, careful steps that characterize someone suffering from chronic pain. We are deliberate in how we move, careful to minimize the movement as much as possible, to avoid stepping in any way that will exacerbate the intensity of the pain. As I walk, my hips and knees slowly stretch a bit and unclench. Still, my lower back feels like steel nails are being thrust into it all along the spine and hips.
As I walk, my body loosens up little by little, and the pain begins to recede into the background of my consciousness. I know it is there; I feel it. But for the rest of the day, I can ignore it because I refuse to let it into the forefront of my brain. I will ignore as much of it as I can for as long as I can. It's the only way I know to deal with it. I have fibromyalgia, arthritis, and a bad back: a bulging disk, stenosis, degrading facets, bone spurs (much of this caused by arthritis). Medications don't work well, not even serious muscle relaxants and opiates. However, I refuse to let these chronic illnesses define me or govern how I live. I have always loved to travel. Though I have had to take my trips slowly and carefully in the past few years, I continue to travel when my schedule and finances allow me to. Traveling while suffering from chronic pain and other chronic problems associated with fibromyalgia like fatigue is difficult, but not impossible. I have to have a good sense of the levels of pain that I am able to handle and what triggers that pain, and I need to be able to say “enough” if the pain grows unmanageable. Sometimes it is necessary to hole up somewhere to ride out a bad day of pain or fatigue. It’s important to know my limits and work around them.
This past summer, I drove across the country in a Dodge Grand Caravan minivan. For much of the trip, I camped, either sleeping in the back of the minivan or in a tent. For parts of the trip I stayed with family or friends, where I could sleep in a real bed, and every now and then, when the pain or fatigue became too much, I stayed a night in a hotel. I drove from Lancaster, Pennsylvania, all the way to Las Vegas and then San Diego, stopping at various places along the way, and then down through the South and Southwest, including Arizona, New Mexico, Texas, Louisiana, Mississippi, and Florida, and then back up to Pennsylvania through Charleston, and so on. When driving, I limited the road trips into eight or nine hour segments each day, though a few times I had to drive a bit longer. Approximately every one or two hours I stopped somewhere – a gas station, rest area, or just the side of the road. I walked for about ten minutes, even if it was in circles around the minivan, flexing my arms and neck as well as my legs. My back, hips, knees, and neck are the places where I have the most pain, so these stops were important for stretching and keeping them from stiffening up too much.
My first stop was Columbus, Ohio, where I stayed two nights with my brother. The drive took a little over nine hours, but my brother provided a comfortable bed and hot shower for me, as well as a day of fun seeing what is, surprisingly, an interesting and fun town. From there it was a long haul to Hannibal, Missouri, and Mark Twain country. The drive took over ten hours. By the time I found a campground, I was too tired and sore to even pitch a tent. I slept in the back of the minivan on an army cot. Even with a thin air mattress on top of the cot, it wasn’t very comfortable because it wasn’t flat. The middle of the cot sagged downward. That night I didn’t care. I slept soundly because I was so tired. The next morning, however, I had to walk around the campground for about twenty minutes until my joints and back limbered up enough to even take a shower in the grimy campground restroom. I took a couple of Tylenol. I do have a prescription for Tramadol and brought some with me. However, it not a good idea to drive while under the influence of any prescription pain killer, so I did not take any during the day, especially because Tramadol makes me drowsy. Even caffeine cannot override that drowsiness well. I save the Tramadol for bad nights.
After a quick breakfast, coffee and email/Facebook fix at a café in the center of town, I walked all over Hannibal, Missouri, for most of the day, stopping to sit either on a bench or in a café for coffee when I needed to, and even stopped at a small restaurant for ice cream. Museums are difficult places to visit because they require so much standing and slow walking. It’s hard on my back and knees. The Mark Twain museum was fairly small, and I was able to sit in certain places, so it was fairly pleasant. It was also air conditioned. Missouri in summer is hot. Then I wandered in and out of the houses that are also supposed to be museums: the homes of Samuel Clemens’ friends who supposedly inspired the characters of Huck Finn and Becky Thatcher, along with his father’s office, his old home, and so on. The slow wandering through these places took a heavy toll on my back. I took a steamboat ride in the afternoon, mostly so I could sit for awhile. The Missouri River is beautiful, though not very clean. We slowly chugged past small islands covered by thick, green, lush trees. Barges sat in the water waiting to be loaded. By the time we docked back in Hannibal, I was rested and had more energy. I drove an hour to the Mark Twain National Forest where I camped for the night in a primitive campground set among a wide variety of oaks, pines and hickory trees in the Ozarks. It was dark by the time I found my site, so I slept in the back of my minivan again with the windows open, listening to the rustle of leaves and tree branches in the night breeze, the crackle of logs burning in a nearby campfire, and the hum and trills of crickets and cicadas throughout the night. I didn't sleep well even though I took a Tramadol after I pulled into the campsite. My back and hips hurt all night, even with a pillow under my knees. In the morning, I hiked for about half an hour on a small trail leading away from the campsites into the woods, stretching my muscles, breathing in the fresh air laced with the scent of pine sap, bark, leaves, and campfires. That helped.
Because there were no showers there, after hiking, I dressed in the back of the minivan, which required crawling back in and out of the van, sitting on the cot and stretching in uncomfortable ways to reach my clothes. It was somewhat painful. I ate a quick breakfast of a power bar, a handful of mixed nuts, a peach, and a can of V8 juice. Eating healthy food is important in controlling pain. I discovered later on that if I gave in to too much sugar or simple carbs, I paid for it with greater fatigue and headaches on the drive. Then I began the long drive across Missouri and Kansas as I headed toward the Rocky Mountains in Colorado.
Around, Salinas, Kansas, the winds became so strong the minivan wobbled all over the road. The heat had become odious – it was in the nineties, and humid. The sky was still clear, but the local radio stations were all predicting bad storms with the possibility of tornadoes. It seemed like all my joints ached, from my fingers down to my feet, which is usually a sign of bad weather to come. So I pulled over, finally, at a cheap hotel near a truck stop. I was grateful for the air conditioning though it went off about four times during the major thunderstorm that hit that night. My joints all hurt worse in bad heat, and both heat and humidity exacerbate the fatigue. Air conditioning helps. The bed helped, too. It was harder than most people would find comfortable, but my back needed the firm mattress. I got up and went to the main door in the hallway leading to the parking lot. A man was also there looking out at the storm. He nodded to me as I stood near him, looking out the glass door at the rain. “Hey,” he said, “I’m making sure my motorcycle don’t get blown over. My wife and I are heading back to Missouri from Las Vegas. Where’re you headed?” I explained I was on my way to Las Vegas, too, eventually, though I was stopping off at the Rocky Mountains on the way. “That’s a good trip,” he said, nodding his head. “You doing it all by yourself?”
“Yes,” I replied. I have stopped being surprised by the multitudes of people who express amazement that I like traveling by myself.
The wind knocked over a Handicapped Parking sign, which landed just a few feet from my minivan. I was afraid the hail would break one of my windows. I stood for a few moments in futility, watching the rain and hoping my standing there would somehow magically protect the minivan from harm. Eventually, I gave up, and said goodbye to my compatriot in insomnia and magical thinking. “Hey, be careful down that road tomorrow,” he said. “Always,” I said, wandering back to my room, leaving him staring out the door at his bike.
In the hotel room, it sounded like someone was throwing a barrage of big rocks at the window. The wind swirled the rain outside like little tornadoes. The next morning, every joint hurt and I could move only slowly. I walked around the parking lot and hotel for about fifteen minutes to stretch my back and legs, then came back, got my camera and took photos of the Kansas plains beyond the highway. The food the hotel served for breakfast was not healthy for the most part, but I did get some oatmeal and a boiled egg. I swallowed a couple of Tylenol. While driving, I ate mixed nuts to keep my energy going. Just a few miles down the freeway from the hotel, I passed an overturned semi truck with its contents strewn along the side of the road. People were trying to pick up everything and clean it up. The cab of the truck looked totaled. About ten minutes later, I came across another semi in a similar situation, again with lots of people trying to help pick up the mess. I don't know what happened to the truckers. Apparently they were on the road when that storm hit, and the accidents were a result of that.
The trip to the Rocky Mountain National Park was long, hot and dominated by the unrelenting, flat, monotony of the Kansas plains. I had to stop every hour or two to walk and stretch. Eventually, though, I made it to Colorado and the Rocky Mountains. It took a lot of mental effort. In my mind, I kept picturing the Rockies as I have seen them in photos. I also listened to an interesting audio book I played on my CD player. If I can keep my mind active and distracted, I don’t notice the pain as much, and I can keep going. As long as the pain isn’t too severe, if my mind is focused on other things, the pain retreats to a kind of static in the background of my day. It’s there, and I move slowly and carefully because of it, but I don’t pay attention to it.
The Rocky Mountains were more beautiful than I had imagined. I was fortunate to get a camping site since I stupidly did not make a reservation, but I was lucky. There were still a few available. It was cold. The temperature dropped to 34 degrees that night. I slept in the back of the minivan because of the cold, waking up intermittently all night, aching all over, despite the Tramadol I took before trying to sleep. Cold settles into my joints to torture them worse than anything else. So I spent that night sleepless, staring through the windows at the night sky, so bright from the full moon that it was difficult to see stars, and gazing at the mountains in the distance, snow reflecting the sunlight off many of the peaks, even then, in late June. The smells of campfires, of pine, fir, spruce, and other trees, and cold seeped through the windows.
END OF PART I
As I walk, my body loosens up little by little, and the pain begins to recede into the background of my consciousness. I know it is there; I feel it. But for the rest of the day, I can ignore it because I refuse to let it into the forefront of my brain. I will ignore as much of it as I can for as long as I can. It's the only way I know to deal with it. I have fibromyalgia, arthritis, and a bad back: a bulging disk, stenosis, degrading facets, bone spurs (much of this caused by arthritis). Medications don't work well, not even serious muscle relaxants and opiates. However, I refuse to let these chronic illnesses define me or govern how I live. I have always loved to travel. Though I have had to take my trips slowly and carefully in the past few years, I continue to travel when my schedule and finances allow me to. Traveling while suffering from chronic pain and other chronic problems associated with fibromyalgia like fatigue is difficult, but not impossible. I have to have a good sense of the levels of pain that I am able to handle and what triggers that pain, and I need to be able to say “enough” if the pain grows unmanageable. Sometimes it is necessary to hole up somewhere to ride out a bad day of pain or fatigue. It’s important to know my limits and work around them.
This past summer, I drove across the country in a Dodge Grand Caravan minivan. For much of the trip, I camped, either sleeping in the back of the minivan or in a tent. For parts of the trip I stayed with family or friends, where I could sleep in a real bed, and every now and then, when the pain or fatigue became too much, I stayed a night in a hotel. I drove from Lancaster, Pennsylvania, all the way to Las Vegas and then San Diego, stopping at various places along the way, and then down through the South and Southwest, including Arizona, New Mexico, Texas, Louisiana, Mississippi, and Florida, and then back up to Pennsylvania through Charleston, and so on. When driving, I limited the road trips into eight or nine hour segments each day, though a few times I had to drive a bit longer. Approximately every one or two hours I stopped somewhere – a gas station, rest area, or just the side of the road. I walked for about ten minutes, even if it was in circles around the minivan, flexing my arms and neck as well as my legs. My back, hips, knees, and neck are the places where I have the most pain, so these stops were important for stretching and keeping them from stiffening up too much.
My first stop was Columbus, Ohio, where I stayed two nights with my brother. The drive took a little over nine hours, but my brother provided a comfortable bed and hot shower for me, as well as a day of fun seeing what is, surprisingly, an interesting and fun town. From there it was a long haul to Hannibal, Missouri, and Mark Twain country. The drive took over ten hours. By the time I found a campground, I was too tired and sore to even pitch a tent. I slept in the back of the minivan on an army cot. Even with a thin air mattress on top of the cot, it wasn’t very comfortable because it wasn’t flat. The middle of the cot sagged downward. That night I didn’t care. I slept soundly because I was so tired. The next morning, however, I had to walk around the campground for about twenty minutes until my joints and back limbered up enough to even take a shower in the grimy campground restroom. I took a couple of Tylenol. I do have a prescription for Tramadol and brought some with me. However, it not a good idea to drive while under the influence of any prescription pain killer, so I did not take any during the day, especially because Tramadol makes me drowsy. Even caffeine cannot override that drowsiness well. I save the Tramadol for bad nights.
After a quick breakfast, coffee and email/Facebook fix at a café in the center of town, I walked all over Hannibal, Missouri, for most of the day, stopping to sit either on a bench or in a café for coffee when I needed to, and even stopped at a small restaurant for ice cream. Museums are difficult places to visit because they require so much standing and slow walking. It’s hard on my back and knees. The Mark Twain museum was fairly small, and I was able to sit in certain places, so it was fairly pleasant. It was also air conditioned. Missouri in summer is hot. Then I wandered in and out of the houses that are also supposed to be museums: the homes of Samuel Clemens’ friends who supposedly inspired the characters of Huck Finn and Becky Thatcher, along with his father’s office, his old home, and so on. The slow wandering through these places took a heavy toll on my back. I took a steamboat ride in the afternoon, mostly so I could sit for awhile. The Missouri River is beautiful, though not very clean. We slowly chugged past small islands covered by thick, green, lush trees. Barges sat in the water waiting to be loaded. By the time we docked back in Hannibal, I was rested and had more energy. I drove an hour to the Mark Twain National Forest where I camped for the night in a primitive campground set among a wide variety of oaks, pines and hickory trees in the Ozarks. It was dark by the time I found my site, so I slept in the back of my minivan again with the windows open, listening to the rustle of leaves and tree branches in the night breeze, the crackle of logs burning in a nearby campfire, and the hum and trills of crickets and cicadas throughout the night. I didn't sleep well even though I took a Tramadol after I pulled into the campsite. My back and hips hurt all night, even with a pillow under my knees. In the morning, I hiked for about half an hour on a small trail leading away from the campsites into the woods, stretching my muscles, breathing in the fresh air laced with the scent of pine sap, bark, leaves, and campfires. That helped.
Because there were no showers there, after hiking, I dressed in the back of the minivan, which required crawling back in and out of the van, sitting on the cot and stretching in uncomfortable ways to reach my clothes. It was somewhat painful. I ate a quick breakfast of a power bar, a handful of mixed nuts, a peach, and a can of V8 juice. Eating healthy food is important in controlling pain. I discovered later on that if I gave in to too much sugar or simple carbs, I paid for it with greater fatigue and headaches on the drive. Then I began the long drive across Missouri and Kansas as I headed toward the Rocky Mountains in Colorado.
Around, Salinas, Kansas, the winds became so strong the minivan wobbled all over the road. The heat had become odious – it was in the nineties, and humid. The sky was still clear, but the local radio stations were all predicting bad storms with the possibility of tornadoes. It seemed like all my joints ached, from my fingers down to my feet, which is usually a sign of bad weather to come. So I pulled over, finally, at a cheap hotel near a truck stop. I was grateful for the air conditioning though it went off about four times during the major thunderstorm that hit that night. My joints all hurt worse in bad heat, and both heat and humidity exacerbate the fatigue. Air conditioning helps. The bed helped, too. It was harder than most people would find comfortable, but my back needed the firm mattress. I got up and went to the main door in the hallway leading to the parking lot. A man was also there looking out at the storm. He nodded to me as I stood near him, looking out the glass door at the rain. “Hey,” he said, “I’m making sure my motorcycle don’t get blown over. My wife and I are heading back to Missouri from Las Vegas. Where’re you headed?” I explained I was on my way to Las Vegas, too, eventually, though I was stopping off at the Rocky Mountains on the way. “That’s a good trip,” he said, nodding his head. “You doing it all by yourself?”
“Yes,” I replied. I have stopped being surprised by the multitudes of people who express amazement that I like traveling by myself.
The wind knocked over a Handicapped Parking sign, which landed just a few feet from my minivan. I was afraid the hail would break one of my windows. I stood for a few moments in futility, watching the rain and hoping my standing there would somehow magically protect the minivan from harm. Eventually, I gave up, and said goodbye to my compatriot in insomnia and magical thinking. “Hey, be careful down that road tomorrow,” he said. “Always,” I said, wandering back to my room, leaving him staring out the door at his bike.
In the hotel room, it sounded like someone was throwing a barrage of big rocks at the window. The wind swirled the rain outside like little tornadoes. The next morning, every joint hurt and I could move only slowly. I walked around the parking lot and hotel for about fifteen minutes to stretch my back and legs, then came back, got my camera and took photos of the Kansas plains beyond the highway. The food the hotel served for breakfast was not healthy for the most part, but I did get some oatmeal and a boiled egg. I swallowed a couple of Tylenol. While driving, I ate mixed nuts to keep my energy going. Just a few miles down the freeway from the hotel, I passed an overturned semi truck with its contents strewn along the side of the road. People were trying to pick up everything and clean it up. The cab of the truck looked totaled. About ten minutes later, I came across another semi in a similar situation, again with lots of people trying to help pick up the mess. I don't know what happened to the truckers. Apparently they were on the road when that storm hit, and the accidents were a result of that.
The trip to the Rocky Mountain National Park was long, hot and dominated by the unrelenting, flat, monotony of the Kansas plains. I had to stop every hour or two to walk and stretch. Eventually, though, I made it to Colorado and the Rocky Mountains. It took a lot of mental effort. In my mind, I kept picturing the Rockies as I have seen them in photos. I also listened to an interesting audio book I played on my CD player. If I can keep my mind active and distracted, I don’t notice the pain as much, and I can keep going. As long as the pain isn’t too severe, if my mind is focused on other things, the pain retreats to a kind of static in the background of my day. It’s there, and I move slowly and carefully because of it, but I don’t pay attention to it.
The Rocky Mountains were more beautiful than I had imagined. I was fortunate to get a camping site since I stupidly did not make a reservation, but I was lucky. There were still a few available. It was cold. The temperature dropped to 34 degrees that night. I slept in the back of the minivan because of the cold, waking up intermittently all night, aching all over, despite the Tramadol I took before trying to sleep. Cold settles into my joints to torture them worse than anything else. So I spent that night sleepless, staring through the windows at the night sky, so bright from the full moon that it was difficult to see stars, and gazing at the mountains in the distance, snow reflecting the sunlight off many of the peaks, even then, in late June. The smells of campfires, of pine, fir, spruce, and other trees, and cold seeped through the windows.
END OF PART I