One Normal Day

One Normal Day
Dorcas Annette Walker

The other Sunday I had one day of being myself- something that hasn’t happened for months. Once I got up and took my pain meds my bones and joints didn’t bother me like usual. I put a roast in the crock pot, ironed a dress to wear, and then got ready for church. I had to keep telling myself to slow down as I felt energy surging through my body. I was afraid it would suddenly leave like it has all too often before. It felt strange to feel strong after dragging around for so long.

Excitement welled up inside me on the drive to church. After not being away from the house for a couple of weeks, my eyes drank in familiar sights. I felt as though I had come back home from being away on a long journey. The world looked brand new. I savored the sight of each tree and flower reveling in familiar landscapes that I had forgot.

When I walked my feet wanted to skip and dance, but I restrained myself as any quick movement threw me off balance, settling instead to walk sedately on my own without having to lean on my husband’s arm for support. It was an invigorating to feel independent again instead of being reduced to the helpless clinging-vine of a woman I had become. I realized that I felt no pain. It was actually scary. Had some kind of miracle happened?

All my senses were alive. Instead of the shell of my body being at church with the real me looking on from the shadows while trying to focus through pain, I now could take in every detail without concentrating until becoming exhausted. I sang in the choir feeling once more a part of my home church and not some visitor. Even though the possibility of collapsing when I got back home hovered in the back of my mind it didn’t dim the joy of being with all my friends, who have supported me faithfully in prayer for so long. What a rejoicing and hugging time we had being together again.

Back home I set the dining room table, served the meal, and then washed up the dishes like I always had in the past. While my guys laid down for an afternoon nap, I walked outside soaking in the beauty of the warm summer day. My flowers reached out to welcome me as I mentally made note of all the things that needed to be done. I wished I could grab my trowel and wade in to restore my neglected flower beds back to their former glory, but I restrained myself. I sat on the front porch, answered some letters, and puttered around like I used to do before Lyme disease took over my life. I wanted to pinch myself to make sure that I wasn’t dreaming.

The hours flew by swiftly… all too fast. I wanted to grab time and stop it. I chatted with my sister on the phone. She sounded so happy that I was having such a good day. Then still feeling like myself, I went to church that evening to hear Dana preach. It had been months since I last heard him preach, much less got out in the evening. Usually by nighttime I am always exhausted and drag around. The regular organist was absent so I played the organ - a huge step of faith as you need a clear mind. I’ve tried different times to play the piano at the house to stay in practice, but often have to quit because it takes so much concentration that I quickly become exhausted and fatigued. My fingers flew over the keys like before and it was a wonderful to feel the music flowing out from my finger tips. I played along for the specials songs, even though I hadn’t practiced, instinctively hitting the right notes like I used to do when playing by ear. The church folk were so excited to see me again that night.

We came back home, I changed into my PJ’s, and then Dana and I relaxed and watched a DVD. He was amazed that I was still up, going, and feeling okay. All too soon it was bedtime. Even though I was feeling tired, it wasn’t the draining exhaustion like usual. I reluctantly crawled into bed not wanting the day to end. I fell asleep with a smile on my face and slept soundly until I woke up once again in pain. Even though I’ve been back in bed again and have had to struggle through rough days of chronic pain the memory of my one normal day helps to sustain me. I will always treasure the unexpected gift that I was given.

The Other Body

The Other Body
Dorcas Annette Walker

I wake up and turn to jump out of bed like usual, but my body refuses to move. I have to concentrate to move my arm and finally painfully slowly roll over. It takes me a couple of tries until I can sit up. The effort leaves me trembling. What has happened to me? This isn’t my body. I feel like I weight 400 pounds instead of my usual 135. Whose body did I wake up in?

When I finally drag myself to the bathroom I see a stranger in the mirror; someone haggard with dark circles under their eyes and hair that has been neglected. Surely it can’t be me! I search for some sign of recognition of myself, but I seem to have disappeared. My shoulder’s slump in despair and I stagger back to bed. I painfully crawl back under the covers. All I want to do is disappear in sleep, blot out this life, and someway find myself again.

I hate this person who is clumsy, drops stuff, and stumbles around having to hold onto the walls for balance. I find it hard to complete simple tasks like getting dressed or brushing my teeth; stuff that I used to do automatically. Now it drains what little energy I have.

I can’t focus enough to talk in complete sentences. I have to concentrate not to mumble or slur my words. My husband teases me that I sound like I am drunk. I start to ask a question and then forget what I was asking. It is like the computer screen of my mind keeps going blank and I have to scroll up and down my memory searching for the right word. It feels like my brain has crashed on me. I try not to panic. What if I my brain suddenly decides to shut down completely? This thought lurking at the back of my mind haunts me.

The Night Owl

The Night Owl
Dorcas Annette Walker

The rest of the world is sleeping as I slowly ease my body down in the recliner to try and lessen my level of pain. All is silent except for the sound of my husband snoring in the next room. Even Lucy Lou, my faithful companion, is curled up at my feet sleeping leaving me totally alone in the dim darkness. I turn on the lamp beside me and try to read to divert my mind, hoping that my pain lowers enough so I can lie back down in bed and relax enough to fall asleep. Time seems to drag. The page blurs in front of me. I blink my eyes and try to focus while ignoring the nagging pain radiating throughout my body. My head falls over jerking me awake from a semi-doze. My entire body is begging for relief that sleep will give if only I can get to that state.

I have a choice. Take a pain narcotic and get enough relief to fall asleep, but leave me the next day feeling dopey and dizzy with my balance affected or try and trick my body into relaxing enough to fall asleep and then feel like myself the next day. If only my crazy bones would cooperate and let the pain lessen just a slight bit I could control my life without another pill. My fogged mind argues back and forth. To pop a pill or not to pop a pill- that is the question of my life.

Life from a Prescription Bottle

Life from a Prescription Bottle
Dorcas Annette Walker

I never used to be one to take pills for an ache or pain. In fact growing up pills scared me as I often would choke trying to get one down. I can remember my mother arguing with me to try and get me to take something for relief for a headache- I would rather suffer it out than to face swallowing a pill. As a teenager I had low iron levels so I got used to taking the small iron pills. When I was expecting the large prenatal pills were a nightmare until I discovered that breaking them in two and putting them in a spoonful of applesauce made the pills easier to swallow. After the birth of my daughter I hemorrhaged badly and was underweight so finally consigned myself to taking a daily multivitamin with the faithful iron pill to keep me going. When I got my first tick bite that triggered Lyme I swallowed the antibiotic pills- anything to get back to normal.

Then pain started flaring up that ibuprofen no longer controlled. My doctor had me take Advil. Soon that wasn’t keeping my pain under control, so he added Celebrex and then Neurontin. My dosage kept getting increased until I was bedfast. Once I realized that Lyme’s had come out of remission, I was put on a daily regiment of antibiotic pills that lasted nine months. The only way I could tolerate taking the antibiotic pills was to take them at night as they make you wretchedly sick, despite popping Phenergan. Pain pills tend to destroy your stomach lining so my meals are eaten with a handful of pills. Shopping trips on good days or visiting with my daughter and grandkids has to revolve around remembering to take my pills so that the level controlling my pain will not bottom out. From past experience (of landing back in bed due to intense pain) whenever I go out I grab my pills in case we run late. I live with chronic pain. Unfortunately the narcotic to keep severe pain under control makes you feel sleepy and drugged. Some days I dither back and forth whether to choose a pain pill or try and ignore the pain so I will have a clear mind.

Pills have a way of multiplying and overtaking your life- you daren’t think about all the side affects or you’d go crazy. Popping pills is a love hate relationship. I hate the fact that my life is tied to yucky orange-tinted bottles decorated with strips of paper for dosage, directions, number of refills, narrow labels for warnings all topped by a white cap. I feel vulnerable realizing that my life is controlled by pills. Yet I gladly swallow them down every day in order to be able to stay on my feet and partially enjoy a normal life. And when I start to feel independent all it takes is a shifting of my pain to a high level to find myself heading back to the mini pharmacy in my kitchen cabinet and reaching for a bottle of pills. Speaking of which, I have to bring this to a close. It is time for me to go and pop some more pills.

The Neglected Wardrobe

The Neglected Wardrobe
Dorcas Annette Walker

I hold onto the sides of my closet to keep my balance and stare at the rows of clothes hanging inside my closet. Bright colors draw my attention as my eyes roam up and down the coordinated colors ranging from light to dark. I reach out and touch a silky fabric yearning to feel it against my skin. How long has it been since I wore a dress? I touch another sleeve and then another as the rainbow of greens, purples, then pinks all call out, pick me! I feel dizzy and overwhelmed with all the choices to choose from. What should I wear? Feeling refreshed after taking a shower I want to get dressed instead of wearing pajamas. I reach out for a blouse and skirt then place it back on the rod, then another. I feel exhausted at the thought of having to iron an outfit. I close my eyes to concentrate. What would be quick to iron or is there something I could wear without ironing that wouldn’t look wrinkled? Instead of all the colors cheering me up, I feel depressed. Will I ever be able to get dressed like I used to? Before Lyme’s I had no clue how much energy it took to pick out an outfit, iron it, and put it on. Now taking a shower depletes my stamina and the thought of trying to pick out a dress among the many choices saps what little energy I have. Slowly I turn and walk away. By the time I put on a pair of comfy pajamas and sit down in my recliner I am trembling with the exertion expanded. At least today I don’t have to lie in bed and stare at dresses that tantalize me with their bright colors.

What dress shall I wear today? I’ve tried to work through my pain determined to go to church this Sunday morning, but finally have to admit defeat. My pain level is too high to endure traveling and sitting. I even ironed a dressy outfit to wear that I haven’t worn in over a year. Now that I have to stay at home I have no desire to wear the ironed dress waiting for me. It will only remind me of what I am missing. So should I choose another outfit to pick up my spirits or simply grab something out of the closet that I wear for everyday? I run my hand down the line of bright print dresses each one a memory of fun times before Lyme’s invaded my life. Dresses that send clues about the kind of person I am; my individuality. The choice is too overwhelming. I need to lie down. As I turn to leave my eyes catch sight of sandals all lined in boxes to match my outfits. When was the last time I wore shoes? I can’t even remember. What has Lyme’s reduced me too? I am no longer the person I used to be. I close my closet doors to shut out the memories.

Life On The Farm

Life On The Farm
Dorcas Annette Walker

Yesterday was a slow day for me, but I was able to get dressed and comb my hair by afternoon- what bliss. I felt civilized at last! I was battling to stay awake with no energy. The rainy chilly day outside matched my mood so I sat in my recliner by the fire and crocheted. Dwight left Sun afternoon to go down to Nashville to stay with his sister and will be coming home Thurs. Eloise (my rabbit foot cat) that usually stays in Dwight's room must have been feeling lonely. I ended up with Eloise stretched out on the top of the recliner at my head, Annabelle (my long hair calico) curled up in my lap purring, while Lucy Lou snoozed at my feet as I crocheted. I almost felt guilty for enjoying it so much. There have been some weeks when it is all I've been able to do to get my newspaper assignments in for my cooking column, Creative Mountain Cookin. Each time I push the button to send in another article and photo, I breathe a sigh of relief and collapse for the rest of the day. I'm always afraid that one week I won't be able to make the deadline. If nothing else it has helped raise my confidence pushing myself beyond what I think I can do and keep my brain cells active. I have learned to work and do stuff while in pain (thankfully there are levels of pain) as long as my pain level stays under a certain point because if I waited until I didn't hurt I'd never do anything. Chronic pain has taught me to stay angry enough to push myself. I refuse to give up! Other days when my pain level is high or I can't stay awake, I go into a zombie mode where I'm in bed and I mentally shut down to survive another day. When my pain level is lower I ignore it the best I can and do what I am able to do- some days are more than others. For each task I accomplish (like get dressed or comb my hair) I mentally act like it is a great achievement to help spur me onward. My biggest frustration is not becoming overwhelmed on the days when I can do a few things as by then my list of stuff to do is staggering.

I have determined this year to find something each day to enjoy no matter how small. Every day that I can I go outside (even if I have to bundle up in my PJ's) for a little bit as it helps clear my mind just to get out of the house. Hopefully it will also build up my strength. I can’t believe how weak I am. On days when I am unable to go outside I sit in my rocker in the sunroom and watch the birds. One day I saw six brilliant red cardinals sitting in my trees surrounding my sunroom while their mates took a turn at my bird feeders. It was awesome! I love (and my cats do too) watching the birds at my feeders. I have managed to keep my feeders filled on the back porch. Dana built an incubator and there are four brown eggs incubating on my table in the sun room. Since the weather dips up and down we have to keep changing the light bulbs to keep the temperature at the right level. Talk about mental stimulation! When Dana is gone Sunday’s preaching, guess who gets to baby-sit his incubating eggs and gather the eggs from the chickens? I got five eggs Sunday- the highest number of eggs yet.

A Tank Half Full of Gas

A Tank Half Full of Gas
Dorcas Annette Walker

Little did I realize that one day my life would end up resembling my neglected car sitting in the driveway. In the past when I drove my car I was always made sure that I had a full tank of gas. As soon as the gas gauge would show half empty I’d stop and fill it back up. I’ve always had a secret fear of being stranded alongside the road with an empty gas tank. Now each day when I wake up I wonder just how far I will make it through the day. Some days after my pain pills kick in I manage to get dressed by dinnertime, only to discover that my energy has run out. The rest of the day has to be spent in my recliner or back in bed. More times than I care to remember, by the time I get up, pop my pills, and eat breakfast I am physically drained as though finishing a day of hard work that leaves me no option but to stagger back to bed totally exhausted like a car with an empty gas tank.

A good day consists of being able to keep going (between numerous breaks) all through the day and cook a simple supper instead of lying around. If I’m lucky to still be up on my feet by supper time, my energy level starts dropping very fast. Sometimes after cooking supper I’ll be so exhausted I have to rest in the recliner before I can eat. Despite my fluctuating energy levels, I refuse to give up and stay in bed as long as I can make my body move. I keep making lists (that keep growing) of things that need to be done. Each day I have to guess how much energy I will have without any gauge to register my energy level. It’s kinda like driving a car with no gas gauge. I start a task hoping that my energy will not suddenly drop without warning. When that happens I barely am able to make it back to bed before collapsing.

There is nothing like living with the uncertainty of one’s strength to undermine your self confidence, especially when day after day you are not able to do simple tasks that you once did automatically. Do you have any idea how much energy it takes to get a shower, dress yourself, brush your teeth, or comb your hair? I now have the energy levels for each task down to a fine science. I feel kin to the senior residents that shuffle down nursing home hallways- folks that I used to pity. Now I am one of them as I concentrate to keep my balance making a conscious effort not to stagger or limp when I walk. At times the energy it expands is simply too much. So I face each day wondering if my energy tank will be half full or half empty.