Hello let me start by introducing myself, I am a wife and a Mom and I live with debilitating chronic pain. I am only one of the thousands of people that are afflicted with these unseen illnesses. I look fine on the outside, I am not sick; there is nothing wrong with me. Think again. I look like there is nothing wrong with me. It is all in the brain.
That statement it is all in the brain is so powerful. No, I am not imagining it. It is real. It overpowers you. Every day things that others take for granted can cause the pain to surface in an explosive pain episode that will cause you to scream out in pain. But you don’t want to alarm the family so you scream out in pain silently as tears roll down your face.
I wore many hats in my life time. These hats have included line worker, postal worker, production staff, engineer, plater, food advocate, warehouse worker, community cook, lunch program worker, farm worker, outreach worker for a women’s shelter, and a few other things that have slipped my mind. Now I focus on providing a variety of online services and have done so for several years.
I used to be so active in my younger days, playing sports with my kids, from football, hopscotch, red butt, baseball, biking, hiking, fishing, swimming (so much so that people would ask when my daughter and I would be coming out of the water) and long walks. I used to take my youngest daughter on walks a couple of times a week. These walks were so long, my hubby would say, “I was wondering when you were coming home” “Where did you guys get to?” Oh the memories. I think about them daily. And smile.
I had a life that I loved. A friend and I cooked full meals for approximately 40 women and their children at least once a week. No monetary payment was forwarded. It was a community service that I provided. Payment was knowing that these women and children had enough cooked food for one or two meals. And of course, the smiles that encompassed their face as their food container was filled with today’s freshly cooked meal.
I am proud that others looked forward to seeing me or working with me. Not now. Things have changed. Kids are now older and not as needy. Nor are they as active as they used to be. Budget cuts also put an end to the community cook. That was a few years ago but I still sometimes reflect on all the effort that was put forth by myself and my friend.
Oh, I still love to cook. I am the boss of the kitchen, even with these illnesses. I often prepare tasty dishes from scratch with diversity. One day I may make some sort of West Indian curry dish, and rice or homemade Indian bread. It is known as naan or roti. I often make dahl to go along with it. Homemade spaghetti sauce, chili, fried chicken, and homemade soups. Cooking has always been my passion and will be until the day I die.
That is enough about what my life was all about before these unseen illnesses overtook my body. I no longer enjoy a hug from family members, no one can just suddenly grab my arm in a playful manner. Touching me to get my attention anywhere on my body is a big NO! They must ask me beforehand so I can tell them whether or not my body and pain levels can handle it. My muscles, tendons, and even skin cannot tolerate it, on most days.
Something as simple as my kitty cat putting her two paws on my forearm (in prep for the kneading session that will shortly follow) will entice me to say “Get off of me, it hurts.” Then I pat a space beside me and say “You can sit here honey, if you would like”. At times, I ask the Almighty questions. “Why me” “How long am I going to suffer” and other things along that line. This is only natural. I thank the Almighty for the pleasure of still waking up on this earthly plane each and every day no matter how much pain I will endure for that day.
My brain still works fine, it is the other body parts that do not. I often turn everything off early in the evening after I have taken my meds. Waiting, hoping, that they will soon set my brain in a slumber state so I can get some relief from the pain that has surfaced throughout the course of the day. Soon I am awake from my slumber due to the pain in my body. It affects my neck, my shoulders, my chest, the nerves that run up and down my spine, my elbows, my fingers, my knees, my inner thighs, my hips, the lower legs and my feet. It will not get better, only worse. There is no cure.
My unseen illnesses have a name. They are Fibromyalgia, Polymyalgia Rheumatica, NASH (Non-alcoholic steatohepatosis) and Osteoporosis. I also have high blood pressure, high sugar levels, high cholesterol, Fatty Liver Disease and edema. For the most part, I am not cheerful, how could I be. I am in too much pain to be nice. My friend is my furry comforter, pillows, and heating pad. The heating pad is used daily to relieve the pain, along with the 12-14 meds that I take. But it is not enough. I know that now.
I try to focus on things that I like to do, regardless of what amount of pain is wracking my body. Sometimes I start cooking breakfast or dinner at 4 am. It helps me to stay focused. The prepping of the food is difficult. Sometimes the simple act of cutting vegetables has tears rolling down my face, but I persevere. Walks outside are a thing of the past. I cannot walk unaided. I have a walker downstairs that used to belong to my mother-in-law. I have not used it yet. I refuse to.
I have also used homeopathic methods to help relieve pain. Things such as herbs and dietary supplements, essential oils and incense. Rubbing my arms with almond oil and then applying a couple of drops of lavender oil, helps me to relax.
I try to keep my mind busy with cooking, and some minor household chores. I try to keep fit by doing some walking on the treadmill almost daily. I also have some hobbies like coloring, listening to easy music, crocheting, and plastic canvas. I am working on a cross-stitch image for hubby. I am trying to get some of my homemade Christmas presents done early as there are a few requests.
I have no in real life friends, only friends that I have met online. Many do not know that I am struggling with these unseen illnesses. I only have my immediate family and pets to offer me comfort as they struggle to understand my illnesses and pain. The kids still compliment me on each meal I prepare, knowing full well about how much prepping and work goes into preparing each one. They give praise when they feel the meal is amazing, and critique it as well, especially if a different meat or seasoning is used that alters the taste ever so slightly. But any statement is welcomed. It helps to know my efforts are still appreciated.
Remember that the internet is your friend. Use it to research illnesses, their signs and symptoms. Ask questions and seek answers. If one doctor or specialist does not give you the results that you need, seek out another. Join support groups as you will be able to provide insight and perhaps learn something new. Remember that you are not alone.
My word of advice to those that are suffering from life illnesses is to take each day as it comes and focus on the good memories and try not to dwell too much on the current day. Enjoy life through hobbies, sharing stories, and communicating with others. The pain is real. It is not all in your head. Do not lose the ME part of you. You are still here. Live life the best that you possibly can!
Our Guest Writer is a wife, mother, grandmother, writer, and blogger who enjoys coloring, crafting, reading, and cooking.
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