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.
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