My mornings begin, I’m certain, like many of your mornings do. I awake with a sense of disappointment when I realize I am awake, must move my body and limp into the bathroom. I’ve already been through this process at least a couple of times during the night, but the early morning awakening is different. With the middle of the night trips, I always know I have the escape of sleep, the warmth of a comfortable bed and the comfort of my trusty heating pad. If I was a dog, my heating pad would be my bone. If I was a ship my bed would be my docking berth. If I was a magician, I wouldn’t still be in this body.
In the morning, when it’s time to get up and start going for the day there is some serious debating going on between my mind and my body, a battle of sorts. My body tells me to roll over and try to go back to sleep while my mind screams at me like a mother awakening a whiny child, firmly and with resolve. Most mornings my mind wins this daily battle but there are days when the body won’t budge, usually based on what I did the previous day. I feel very sorry for anyone who calls me before 10 a.m. because I am their worst nightmare. I can even terrify that computer guy from India, you know, the one named Sam who calls you at 7 a.m. to tell you your computer isn’t working? Well, I can make him cry out and hang up on me.
My next move, and I use that hideous word “move” with some cringing, is to reach for a drink of seltzer water sitting beside the bed because I need to prepare to swallow my handful of morning pills which I’ve already prepared in a weekly-dose-container lying beside my bed. I almost always need a pain pill to add to the mix of chemicals in pill form and hesitate to swallow all of them because I know that act will require a chaser from a bottle of Ensure kept cold in the refrigerator in the next room. There, you see, more movement. Can you blame me? This whole icky life of pain is movement, movement. There must be a way to get through each day without it. Somebody…think of something, please. Invent another way to walk, sit or stand. My tush hurts, my back cries out, my knees are painful and my neck and the rest of my joints, well, no good news there. After the pills and the Ensure are in, it is time to descend…the stairs. Before descending I have to turn off the humidifier which I need to stay moist at night, put in more eyedrops and down a glass or two of the seltzer. These are the joys of trying to swallow in the morning when you live with Sjogren’s Syndrome; which dries the membranes every chance it gets. I always awaken with such a dry mouth it is difficult to speak or swallow.
In the morning, I am no Southern belle descending the stairs at her debutante ball in white satin, no Cinderella meeting her Prince for the first time regaled in icy blue silk. No, I am Attila the Hun, descending the stairs one painful, agonizing, groaning step at a time. I grasp the rail on the staircase as if it were my broadsword and my life depends on its reliability. Our wonderful little Yorkie, George who has been squeaking, snoring and otherwise enjoying his slumber until this moment in time in his kennel next to our bed, peeks out in disappointment that his morning nap has been interrupted. He loathes being in a room by himself and feels required to follow me down the stairs. He usually waits at the top; clearly afraid I might fall on him and kill him as in dead, splat, goodbye. When I’m finally downstairs he follows and greets my husband who has started to close the book he’s been reading peacefully since he got up, hours previously. He has fed the dog who went back to bed, turned on the heat in the downstairs bath, and performed a few other household chores. He is both understanding and kind. I thank God for him each day but you must not tell him that or he might want a raise. Oh, I don’t know what raise. I just say things like that.
That’s it folks, and I know you know what it is. “It” being the daily struggle with pain. Be it grinding, scalding, cramping or searing, it is always there for many of us in this world. It may change in degree or intensity but it never, I say never, goes away. Aspirin, a mother’s love, a doctor’s diploma nor positive thinking will abate it. The very presence of something that persistent is cause for a good case of battle fatigue. Those mornings when neither you nor I can imagine facing another day living like this, happen often. It is a difficult situation to explain to those who live with us, know us or barely know us. It’s the sticky recording singing the same phrase over and over again; it is the broken spring hitting a sore tush on an old sofa, it is the migraine all over your body.
How is it possible to explain to someone how monotonous and hideous it is to live this way? I have tried on various occasions to give up. It’s harder than you think, this giving up business. Short of lying down with my arms crossed clasping a bouquet of black roses, giving up just hasn’t worked out for me. There is some driving force that makes me climb, fall off the edge of the bed, or crawl out but I just keep doing it. What are the other choices? How does one give up? There have been hundreds of days in the past thirty-four years when I have tried staying in bed, reclining on the couch and yet, all the urges of life cry out to me. Hunger can’t be sated without shopping, some cooking or thawing. Eventually something, somewhere in this house has to be washed, dried, cleaned, etc. You get the idea because I know many of you live it, too.
Life goes on, dragging me behind it and I am usually grateful for the towline but there are some mornings, you know those mornings when it all seems impossible to achieve…anything. Those thankfully rare mornings, I collapse onto our sofa, reach for a warm cover and say to my sweet husband, “That’s it. It’s just too much, too much!” Then I start to cry. I sit there waiting for the NSAID, the steroid, Gabapentin and all the other medication of each morning to take effect. The Ensure is enough until I can clomp ungracefully to the kitchen and find a bit of breakfast that is easily assembled. Boiled eggs, toast, a cup of tea with honey, low sugar instant oatmeal or berries with granola are a few of my favorites. Low blood sugar is not my friend when I’m trying to start my engine. Eating always helps in the morning. Just think about how long our stomachs are empty at night. It may be as long as fifteen or sixteen hours then we awaken, throw a handful of chemicals into the gut and still do not have fuel for energy, awareness and food for the brain. I often forget to be good to my body, instead getting caught up in my pain and how difficult it makes my life.
Remember when we were children and you’d be scuffling, “rough housing” or getting tromped on by someone in a game and you’d yell, “Uncle, Uncle.” For those of you unfamiliar with the term it means, “I give up.”
Well, sometimes as an adult living with all sorts of health issues, most of them painful if not life threatening, I sometimes must say, “Uncle, Uncle.”
That’s when I utter a prayer to ask God to give me courage to face the day, the strength to do what I must do and the grace to pull it off without being full of self-pity. Self-pity, complaining, bitterness and anger are my enemies. I fight them every day of my life. Bitchiness can also be added to that list.
I try to practice thankfulness throughout my day. I know some of you won’t understand and will think it strange but it really works. When I almost trip and catch myself against a wall or counter, I say, thank you Lord. When I am hurting too much to walk far but need to go to a store or medical office, I find a parking place right in front, thank you Lord. When I’m having so much pain I constantly forget, more than usual, where I have put something I believe some part of my mind knows where it is and ask for help. I find it, again, thank you Lord. In all things, I try to seek the guidance and advice of a power outside myself. If God is love, then I try to tap into it every day. Giving up is not an option. Giving in is not possible, well, at least not for long. Getting on with it, this thing called life is the only choice. This pain-filled me? That’s the only me I have.
So, go away Uncle I won’t be needing you today.