Sometimes the pain is just a hum in the background of my experience. I can distract myself from it. I can do chores around the house like dishes and laundry.
And then the pain comes screaming at me: “Me, Me, Me, Look at me!” I am wrung. I can do nothing and I cannot distract.
The pain is too much. I shower to give myself the warmth of the water, but I must sit, I cannot stand, the pain manages my body’s energy.
I am disabled in ways that cannot be seen. There is conceptual understanding, I know. But the other understanding is not there. I can see it in the eyes of others that I love and who love me.
Sometimes a long time goes by with just the hum. I don’t know when or how the pain changes.
Yes, I am overdone, but I was just living! I didn’t do anything special or extra, look how active I was in my old life! Why can’t I work all day and have the satisfaction of a job well done?
Because the fibromyalgia is not listening to my old life. The fibro believes it is a new day and a new way to act on this body. So. the fibro marches forward attaching to each muscle and gaining in pain.
How does one function when life is this unpredictable? One day a bearable functioning and the very next, an unbearable existence steeped with pain.
How does one function when the pain puts you down?
It’s daunting if you are new to poor health. We healthy ones vastly take advantage of our health. We never give it a thought that we wake up, ease ourselves out of bed and can use any fingers and hands to brush our hair and teeth. What a wonderful gift that arms are!
Being sick usually comes on abruptly and without warning. Typically, we react with denial. We can’t be sick, “I’m not sick, that is just allergies.” Or, just as often “that stomach-ache will go away (and when it doesn’t) I must have eaten something bad.”
Denial is a big part of getting sick. There are so many over the counter cold remedies because people don’t want to have what they have, which is: illness. We take the cough medicine, the nasal decongestant, literally anything to keep us going. There is something un-American about being sick. For some reason, we do not want to be seen as weak or vulnerable in any way, and that includes illness. So, we deny and get angry.
“It’s not fair that I am sick, look at Tom, he is never sick!” or “this is bullshit, I shouldn’t be sick, I take good care of myself.” Or “I am never sick; how did this happen?” In all of these various ways, we keep reminding ourselves and others that the situation is temporary and will shortly be over, because we are good people that take care of ourselves.
If the illness is over quickly, then all is well, and we can move on with our theories of illness and weakness and vulnerability intact. We change nothing about how we think, as we recovered quickly and easily.
What if the illness lingers on? The illness does not leave us and thus our lives must necessarily change to accommodate the illness. We believed that we were healthy because
a) I am a good person
b) I take good care of myself.
While these two statements might be true, it doesn’t necessarily follow that we can have good health. Poor health has etiology in so many places. There are so many ways and reasons that we can become sick. It is never through our own fault, or because we are a bad person.
“Am I ever going to be well?” She sighs sadly as she gazes out the window at the green trees and blue sky.
“No, you’re not!” says the angry child in her head.
And so chronic illness goes. There is so much chronic illness in the world today. Medical consultations abound on the internet. “Drink probiotics to cure everything!” “Use the Keto diet to get rid of pounds!” “Leaky gut is your enemy!” The trustworthy and the shysters share space on the internet trying to convince anyone and everyone that the answer is just a click and a $50.00 dollar bill away from you.
The truth is that chronic illness is here to stay. You won’t find the cure on the internet; you won’t find a cure from your doctor’s office. There is no cure. So, what changes and what do you do?
The answer is different for different conditions. For me, it’s fibromyalgia. My pain requires a lot of doctor visits = money and time. I am fatigued and there is a definite limit to my ability to do. Doingness just stops, hard stop.
Accommodations: First you don’t want accommodations because it casts you as a weak person, one who cannot accomplish. Ugh. Now you must admit to the understanding of your condition, which is never.going.away. Ever.
You resist accommodations because you don’t want to be “that person”, the needy one who has to have “extras” just to get the job done.
You are clearly in anger at this point, you have done your fair share of denial and now you have moved into anger. “Other people” don’t need accommodations, “other people” don’t need anything special to do their work. And so, your thinking goes. It’s not fair that you are suffering from your illness and you are angry that you need help.
It’s un-American to need help. We are all rugged individuals, tough and ready to take on anything.
If you have a chronic illness, if you are disabled, “other people” are likely to dislike you or ignore you, and this can be disappointing and discouraging. At least part of our denial and anger is because of this concept. It is hard to accept the loss of the “rugged individual” in illness and disability.
It’s important to recognize that it is just a concept and a bad one at that. There is nothing wrong with being disabled or with having a chronic illness. Yes, you do need accommodations; this fact does not mean that you are bad, or less of a person than before you became ill or disabled.
You are still the wonderful person that you have always been. Possibly you have new insights and perceptions that make you an even better person than before your illness.”
You may be bargaining “God, please take away my sickness and I will be a good Christian, Jew or Muslim.” “If you give my back my health, I’ll never complain again.” But, guess what? Illness knows no reason and attacks everyone and anyone indiscriminately, all the bargaining in the world will get you nothing. Bargaining is part of the process and leads us to depression.
Depression is the first sign of acceptance. You begin to realize that you are sick, and also realize that you are helpless against your illness. These realizations can make you very sad. Depression can take over, but it cannot be a place to stay.
The final stage of consideration for your loss is acceptance and with it, a kind of peacefulness. You make peace with your body and you let go of any blame attached to your thinking.
The five stages of grief that Kubler-Ross wrote about were never meant to be linear. One day you can feel acceptance and the very next day go back to being angry.
Make no mistake, losing your healthy body is cause for grief. After that, you are then free to choose. Am I incredibly sorry for myself and hateful to everyone? Or, do I love life in a very new way? Choose wisely, it is the rest of your life…
I am constantly repeating myself to doctors. I’m explaining my medication and my health goals. Doctors don’t listen very well.
I am wondering why doctors can’t understand a wholistic view of my health. Why must I go to so many doctors to get an understanding of what is happening with my body? Pain management, Rheumatologist, Endocrinologist, gastroenterologist, general practitioner, orthopaedic surgeon. Theoretically my GP should be managing all of the pieces of my health care and coordinating that care. I have never met a GP who was interested or prepared to do that.
I am turning to alternative medicine. These practitioners are kinder and more welcoming. They don’t have answers either, but at least they are interested. CBD oil anyone?
I am getting tired, indeed, I am exhausted by the pursuit of wellness. Sometimes the news is good, sometimes it is bad. Mental health is a problem. I have been diagnosed with dysthymia recently. Ugh.
I am desiring that my disability claim is approved. I have worked very hard all of my life. For over a decade I had two jobs. I went to school at night to increase my earnings. I have been working since 1972. Why would they deny my disability benefits? What work can I do with exhaustion and brain fog taking over my life. We manage my pain in a painful way: surgeries, cortisone shots, trigger point injections and Neurontin. I cannot function in a professional environment. Why is my claim for disability being denied. I desire fairness in this world.