I don’t want to be awake. It’s been a perfect night for sleep, rain in Stockholm. Tin roof, comfy bed, the whole kit and caboodle. Real as can be, exhausted by additional pain from flying while disabled, I lie here wondering how will the special chronic repetitive pain syndrome diagnosis is going to play out. Later today I check into Uppsala universitet sjukhuset smartkliniken, that is Uppsala University’s pain clinic for a one week assessment. From this poking and prodding of both my mind and body it will be determined if a team of specialists will have me back for a month long stay. How does one rehabilitate chronic pain? I am too far gone to think about the entirety of it but will say, from what I have read, my brain is scrambled, the coding has been buried or tiny mice in my head have chewed through the wires. I am never free from pain, rested and refreshed or in the slightest comfortable. Hope is on the table and I want to be that kind of human who believes, ” change is gonna come, yes it is.” Lm attempts to move forward and cry the entire few hours and minutes I have left with fear and angst using the “why me spiel”. Rock is in place, ready for whatever comes next and has tucked Lm into a safe space for the time being. Real as it gets has taken center stage and I, the woman almost sixty years old will wrestle with fervor to let the rainy, dark morning give me some time for my eyelids to grow heavy, for my own purring snore to begin and perhaps I’ll be gifted a dream where I am unchained from my physical limitations and run a muck carefree.
Narrator: RealMe. Little Me needs to step away for a good long while. I am by the North Sea where I have spent several special occasions in this very old gatekeeper’s cottage; it’s familiarity soothes something deep within me, a place so primal and eternal that I feel reintroduced to my own heart, my dogged determination and please bare with me when I whisper to you my secret idealisation, a very old soul called ME. From my bed with floral bed curtains in green, muted red and golden hints I sit carefully propped up to convalesce both my body and my mind. I look out of the iron crossed windows, down to marshy meadows where the inlets water is smooth; no winds have begun to blow which I often enjoy as they give me a natural resource to recharge my vitality . Tuesday I fell in the bathroom in my beloved 1700’s farmhouse injuring three ribs and spent the better part of two days in hospital and Doctor’s appointments. This has occurred one week short of my flight to the best CRPS, that is Chronic Repetitive Pain Syndrome, rehabilitation hospital in Sweden. I have had fear of how I’ll manage with my additional pain and travel with out conflict, yet when I woke this morning to the foggy gray skies, the solitude of the sea and the ease of no no frustrations a wisp of hope wrapped around me like the arms of an old friend and gently said, ” you can do this”. It is true, I can and I will. This special cottage is strong, durable and has seen centuries of storms. The spirits here unite and gather around me and lift my head up, warm my heart that was growing bitter and sway me so gently that I know I can control Little Me and face the new year with hopefulness. So, to you my readers I send simplicity, a lot of love from one survivor to the next. May a season of bliss welcome us into 2023.
Chronic Pain; The Modalities of Madness
“It’s that TIME of year, the gruelling, catastrophic melancholy jingles of good tidings deepen Lm’s bastard of a headache.” Rock reminds Lm it’s not her “JOB” to be jolly. Lm thought last year was tough with her mother visiting; fibromyalgia, brain fog and her severe spinal pain made being merry impossible; polite and engaging was a morose daily event. Lm’s mother still does not get it even though she says she does. Her mother wakes at seventy-nine years old in good health, fully dresses, puts on her jewellery and lipstick then the giant elephant, PAIN in the ass, Lm woke slovenly, unrested, clad in in her night clothes, needing the toilet and wishing her mother to be quiet. “Good morning!” “How do you feel today?” Blah, blah, blah would ensue, and Lm would use the bathroom then excuse herself to her room again. She had wanted to shout and completely lose her fucking cool and say, ” I don’t know what a good morning is!” “I feel like shit”. What a tiring memory; simply recounting it drives steel bars through Lm’s ears, clanging, banging, whistling to the point of insanity, “Tinnitus”, Rock recalls. Lm glares at Rock, “Shut up, you don’t have ears.” Now, after having covid last March 2022 Lm has made a steady decline, like a little steam engine riding it’s breaks she slowly took each turn, believed she was in control and would not careen into the mountain sides and land in a big heap culminating into a pile of unsalvageable parts. Yet, she did. She is a heap of bitter moments, throbbing bones, more and more fatigued each minute as she lies entangled within her dreadful blob of perpetual turmoil. Dreams are cruel and vivid now. Christmas music isn’t cutting it for her and Rock pushing her to wash her hair, take more pain meds only irritates her. An unwelcomed mouse gnaws in the ceiling above her bed and her eyes burn from lack of rest. Sleeping is her game now. Fa la la la la. Rock is not as strong now. He has always carried her with crushing will and managed her weaknesses; it’s obvious he is vulnerable, too. She has clung to his ability to push through the physical pain, the abuse, the sickness, the past, the failures and smile. He can’t do it alone now and is scared. Who will help Lm? Who will see she is too weak to fight much longer? She does have two promising doctors now and soon will fly off to a special hospital for chronic repetitive pain patients. What about her CPTSD, BadDad, unresolved “Black Sheep” night terrors? What about suicidal ideation? No one wants to hear this part. Amsterdam is sounding like a good place to depart this goddamn nightmare. Laying on sofas, forgetting words, sleeping for hours now while it seemed like a romp in the snow wasn’t so long ago, a wintery walk through the forest, cooking masterfully with passion, playing a game of cards with the kids, being the “I got this” kind of mother. Lm knows she doesn’t have this now. She won’t climb a mountain, canoe or see Botswana nor make it back to her favourite old haunts with her husband. She dreams of parties and dancing, remembers her youthful beauty and laugh. She can’t take care of her surroundings and just wants out. Rock can’t console her more. He has run out of ideas. There are no good surprises coming. She will sleep through the holidays, check out her last shot at being “better” at the special pain rehabilitation centre and then come back, just the same, turn sixty in January in an uneventful way and wonder no more “why me?”. She will let go of Rock, stop dreaming and stop trying to make friends stay. No MORE existing through this shit, she will give in. She doesn’t want to be felt sorry for, sympathy and prayers. She wants OUT! Because NOBODY truly knows what it takes for her to live. The anxiety, lying in a pool of regrets, wrong turns, and basically her dumbass MINDFULNESS journey leading her right back to what she really is, useless. A total drag. Someone who holds everyone she loves back. Pride has left on the last ship out of here. Divided. Lm is now a thing. An “it”. Rock stumbles and TRUTH agrees, the two of them are in for a big last fight before the bell rings and the winner is declared. Honestly, in the boxing ring of life, he doubts either will rise again.
Pimp your blog. Add some bling. Make it shine, stand out, shout, attract, organize everything so it’s more appealing to the reader? Lm is biting her lip again. Truth is Naked. Truth isn’t fluffy and for a good time. It’s simple. Truth should not be camaflouged with frivolities. Lm has locked herself in a small closet where she has hidden the memories of one person who she won’t forgive. Ever. Wait, she has someone new! This is not news to ROCK who knows her best. Lm is never forgiving herself for letting people who loved her do mean things and get away with it. Her hair is falling out now and she holds onto a picture of herself at fourteen. What the hell is wrong with me? She kicks the door and is like a feral street dog in Thailand. Roaming, pleading, desperate to find a kind soul. She can’t be touched but is needy. She waits for the moon to rise and then she will sneak out and climb high into the tallest tree and fall to the ground and die. No. That’s not good enough. If she lives with more pain then she has lost again. Her suicidal ideation is a huge issue. She never wanted to die but now if things don’t turn around she would be okay with it. That last breathe and that white light with angels lifting her soul peacefully, leaving her cage, the one that hurt all the time could go to the damn compost. Maybe. Another day. ROCK wishes he had the ability to smoke so he could have something to quell his anxieties. He stands firm. There is nothing that she can do to herself when he is near. Baby birds fall from trees all the time and live. Lm is NOT like a little robin who knows nothing about what’s out in this cold,cold world. She is mumbling. She is circling around and yelling at her own inner child. He wants to intervene but he knows she must do the work. One day, ROCK believes he will transform as well and Lm can join him as one. When this day comes they will be free and walk away, with arms, a cigarette in hand and blow smoke rings into the sunset.
A Trickle A Tad A Smidgen A Sliver A Pinch A Drop A Bit, Not More. ROCK is slaying the morning with a scathe, a sharp cut through Lm’s fog of anxiety. “Why did you open that can of worms?”. ROCK is now covering my tracks, pushing me down into the stairwell for letting wild ramblings outside of the confines of my safe place. “You will get in trouble again with that caustic spewing, you dig?” Rock is locking up my mind without worries and vows to shield Lm from the light under the door. He is watching for the footmen, the cowards and protests that will brew from Lm diving into the deep end of the pool. The stream of words that made tremors and cracks in the middle of nowhere are still felt. Lm crosses her fingers behind her back and rests against the cold cement walls. She is not afraid now. She is determined.
All aboard! It’s the Pain Train. My seat is permanent, my choices are few and I can’t go to the bar car, the toilet or be around others without making a huge fuss, therefore I choose to stay in my assigned seat. No one can help me; I own this pain. Looking out the window the world flies past and life is taking off at a speed I can’t cope with. The conductor is my nervous system colliding with my brain’s reactions to every tiny bit of stimulus. I see you and I care but I am off track and my brain signals are traveling at such a rate that I do not understand the smallest of conversations or even my own thoughts. This is not the train anyone with any healthy lifestyle wants to board; but it is packed. People are laying in the aisles and hoping for assistance, recognition and acceptance. Chronic Pain Syndrome or CPS is an official diagnosis now by WHO, (no not the band) , rather the World Health Organization. I was recently diagnosed with a severe form that has caused me to lose my vocabulary, shortened my fuses so to speak causing me to be easily startled, reacting with a scream or even sobbing as if the whole world is ending. In some ways, on some days, it actually does feel like a hopeless battle to live this life and ride this train. I have a collision of diagnosis. Degenerative Disc Disease, an inherited condition that I’ve known of since I was in my twenties turned from a back ache after gardening into the most severe form fast in my late forties. At that time I was given 20mg patches of morphine that I changed every few days. I believed this was as bad as it could get then. Yet, I was swimming, walking and riding my bicycle still. I also was cooking which I love to do. From there I slowly began to develop boney growths jutting inward toward my throat and spinal cord and I was told I had unfortunatly signs of early onset osteoporosis. I was put on a bone mineral supplement and more vitamin D and calcium was prescribed. Can’t get worse than this I thought, until it did. A spinal specialist said there was nothing that could be done. I not only have scoliosis, but also severe arthritis and various deformations head to toe. Earlier I had been sent to a university hospital rheumatologist who diagnosed me with fibromyagia, something I would not accept or grasp until I had the most severe flare I have ever had recenty. ( I am recooping now yet have a lot of work to be steadily on my feet again). The Dr.’s who upped the morphine years ago are unable to treat me now. I will say it barely takes the edge off on 30mgs daily slow release which includes fast acting oxynorm up to three times a day, muscle relaxants, anti-depressants, blah blah blah. The more boney growths, the worse my spine becomes. Earlier I was walking with a rolater and or crutches or a cane. Sitting was and remains one of my worst enemies but as I said, my seat is assigned for life. I then contracted covid in March of this year after three vaccinations; the very first time I went out into the city I caught it. I have not regained my strength, have developed chronic asthma and sleep as if in a coma or swing to the other extreme, experiencing severe insomnia and nothing will knock me out. My head hurts daily, I now have tinnitus and vision issues. The train chugs along and now I am in cue for a pain specialist rehabilitation hospital north of Stockholm. I never write about physical pain because I don’t know how to project the feeling with words so that others understand. I know that a really nice man, the husband of an American friend said the right thing one time years ago and it stuck with me. “Hello, it’s nice to see you are having what looks like a relatively good day”. It meant the world that someone knew my good days were fewer than my bad and that he also understood people like me don’t get better, we are chronically living in a state of pain that can ease up a bit but never leaves us completely blissful. For all the readers and writers out there who are living with CPS, I understand you now. I am sorry that I did not understand what my fellow passengers were experiencing until now. Mental health is important to address for everyone and somehow I let mine fall apart. Hopefully after my stay in the Pain Rehabilitation hospital (Uppsala University Hospital) I will be able to read with focus, write with more clarity, listen to others and converse, start walking for my overall health and socializing a bit more with those who have hung in there with me. I will still ride the train with you and I will try to reach out to all of you much more. Remember, you are not alone. We are on board together.