Every time my pain level escalates, combined with the pain I am already trying to control, I often experience an array of emotions making me feel as I did when my journey with pain first started. I no sooner seem to get on top of my pain levels with medication when something new comes along and changes the balance I have just achieved. After adjusting to my recent twenty-fifth surgery, a toe fusion, I attempted to try to use my sewing machine for the first time in years. However, within minutes, leaning carefully over the machine, it just turned out it wasn’t safe enough and C-5 slipped out, just below my second neck fusion. I was quickly reminded why I chose to get that neck fused, for the neck pain quickly overtakes your wellbeing, your concentration and, at its worst, your ability to feel hopeful and happy. And how annoying it is to begin that process again of trying to cope with these negative changes, often creating a downward emotional spiral.

The good news is that when this settles back down and C-5 – 7 stop slipping out of position, things will improve. It, unfortunately, takes longer for the calming of the body living with Ehlers-Danlos Syndrome. So for now, increased pain, lack of quality of sleep despite cannabis increased and adding even more ketamine troches before bed, having my husband push down the subluxed shoulder at midnight, and a good cry seems to be for life.

Living with uncontrolled pain makes my quality of sleep or any sleep impossible. My cognitive function often diminishes dramatically as excessive pain stimuli overwhelm many normal cognitive functions and then, most traumatic, is the sinking feeling that comes with the loss of hope. Thanks to the second neck fusion, I can have times when the stars are aligned, and I get a break for a moment and am so grateful. But I live knowing missing one medication, not keeping the muscles strong to hold the frame together that has useless ligaments and tendons, eating food and taking medications I can’t metabolize, being hugged causing the bones to shift, and a simple jolt of the car – all this simply goes away and I work again to try to find that peace in this body.

So, yes, I live with pain, struggle with life and the loss of dreams that are never going to be. Part of what helps me cope is to attempt to act pro-actively. That is why you generally see me posting the efforts we can try to take to help ourselves and to attempt to look at what is left in our lives that is positive. That may sound like it means I have no pain – for me, it means I am trying to live the life I have left and be remembered by my family and friends as one who tried to not be bitter and still care about those around me. Life is made up of choices we make, and these happen to be mine and know I am not judging you for choosing to take a different path with what you are coping with.

Don’t you just wish that those who don’t understand life with pain could spend a day in your body to learn, listen and have compassion for those who, by their circumstances have been forced to live a life dominated by something they never asked for or deserved have been asked to live life with it?

May life be kind to you,

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

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