Pain Reality Day

Today, September 9th, is Pain Reality Day.

Its the day where you tell the truth about your chronic pain, no glossing over it with pretty words. Let people know how you’re really feeling.  For those of us who try not to bother anyone with our everyday battles, this is so difficult.

Here goes.

I took pain medication in order to sleep through pain. I woke up anyway several times last night so I’m awake this morning with a headache from lack of sleep. My eyes are looking  bruised with shadows. My lips are compressed slightly. The pain that is my everyday companion is situated in my lower right abdomen. Just up from my groin, down and to the right of my naval. Its right where you bend, twist, turn, and move throughout the day.

It sits there every moment, below the skin like someone is holding a lighter and a pair of vice grips on it at the same time. Waiting to erupt. I may look fine on the outside, but on the inside, I’m not. I wait for my everyday movement, my simple walking to my office, the bending to pick up Patches, the stair climbing, the sitting and relaxing to aggravate my pain into a roaring, clawing tiger. There is no particular trigger, my pain often wakes me from sleep.

What is causing this?  My doctors believe that I have a nerve, or branch of a nerve, that is trapped in my abdomen. I’ve had nine abdominal surgeries since I was sixteen. Its believed that one of these surgeries accidentally trapped the nerve, so now, every day is painful.  Its no one’s fault. This is one of those unforeseen complications that we’re warned about when we go in for surgery.

And so far, no one can fix it. I’ve had a nerve block (twenty-four blissful hours pain free) and two ablations. The first was the freezing kind,  and the second was a radio frequency ablation.  Neither worked, although I was very hopeful both times.  The second disturbed a nerve down my right leg and has given me excruciating pain there too. But I am assured that this should resolve ‘over time’.

My pain manager has done extensive research on my case, and other than one trial in Oregon that highlighted ‘dissecting’ the nerve to relieve pain, no other doctor wants to touch this. He doesn’t feel that the Oregon trial would be right for me since there is no way to tell exactly where the nerve is trapped. Traditional tests such as nerve conductivity studies can’t be done in the abdomen since nerves don’t follow prescribed paths like they do in arms and legs.

And now, here I am. Feeling ancient and ugly because of the stress of dealing with chronic pain (and vain enough I’m not showing you a picture of that face). I have hidden much of it – unless I’m in the middle of an episode – because I don’t want to make people uncomfortable. In reality, pain is always on my mind.

When I go on the Tri-Glide with my husband I pre-medicate. When I want to go for a hike – we’re talking a light hike – I pre-medicate. If I know I’ll be doing something that means I’ll be more active – such as exercising or walking – I pre-medicate. Just to keep the edge off. I also have to be sure I have medication with me wherever I go. Then I have to worry about being able to get something to eat so I don’t take my pain medication on an empty stomach.

When the pain blasts past the medication there is very little relief. I am doubled over or curled into a ball with my hand clutched to my abdomen – not that that helps at all, its just a reflex. Waves of white hot lightning blast out, twisting and burning and radiating out from the spot just a little. That’s one good thing I guess, the pain doesn’t radiate very far so its very confined to one place. Perspiration forms all over my body as I fight the pain. I take more medicine and beg to get through it.

After the episode is over, I’m shaken to the core. Weak and trembling. And waiting until the next time the pain attacks me again.

Michael and I on the trike
Michael and I on the trike

My method of compensation is to keep my mind busy. I’m a busy virtual office assistant with some incredible and understanding clients. I’m a photographer, I do wood work, and pyrography, I’m an herbalist (and believe me I’ve tried to find something to help!), and my latest love is Avon. Without these activities I would be lost and depressed.

So, now you know the truth. The next time you ask me how I am and I say Fine, look me in the eye, and ask me again. Because, this is my reality.

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