pain management

I check my list and lean on my cart. There’s that familiar flutter, the anticipation of it’s going to get worse and I’m stuck. I’m here to buy groceries and the pain in my legs is explosive. I could desert my cart and drive home, but we need food. I began the shopping trip okay, my legs cramping but tolerable. And then the ache crept, grew bigger and I have three more aisles to go.

Butter, sour cream, milk go into my cart. My left leg feels squishy and I know there’s blood pooling in my liner. (A liner is made up of silicone which goes over my leg and then fits into the protheses.) What I need is some privacy; to take off my legs, ease the pressure and clean up the blood. I have to get to checkout.

One step. Two steps. Twenty steps. A hundred steps.

My hands shake as I plunk every item onto the conveyor belt. Fast and careless. While I pay I look for a restroom sign and there it is; a beacon. Public washrooms are gross and they’ve become my safe haven.

I roll my full cart into the handicapped stall. I sit down hard. Legs off, shoulders sagging, my head in my hands; I wait. Until the throbbing subsides. Pain is a second heartbeat. A ragged pulse.

I grab toilet paper to catch the dripping blood before it reaches the floor. There’s a scrape, a shuffle outside the door. Deep breath. I slide everything back on, biting my lip as the liner rolls over the open wound. Opening the door, I apologize to the woman with her baby for taking so long. For a quick second I think maybe I should explain. But. No time. No strength.

She smiles. “No, no. That’s okay.” Her sincerity, my weariness almost makes me cry. Now I have to get to my car.

One step, three steps, a thousand steps. I still have to drive home. 15 minutes of torment until I reach sanctuary.

Since being burnt and losing my feet due to a horrific car crash 17 years ago I have dealt with chronic skin breakdown and pain. There are days of reprieve. I’ve even had weeks of reprieve, but my skin breaks down, I get different liners, new prosthetic legs, and pain resurfaces. Distress is never far away.

A few short years ago I wrote a book. A memoir with a cover and publisher and title and everything! There were book signings and television spots, months of feeling like the luckiest woman in the world.

I was invited to speak more. My kids began to grow up, turning into people with lives of their own. Life got busy. My legs were an ongoing problem. Battling infections. Energy waning. A bad week spiraled into a bad month and then it was, “it’s been a bad year and a half. Oh, um, I guess it’s been two years now.” There didn’t seem to be an end. Bad legs became bad health. My body couldn’t cope. There were frequent visits to doctors. Blood drawn. Priorities changed.

Careful with my time and energy, my life is a forced list of capabilities. There’s little room for extra. I’m fine until I’m not. Each day is different. When it’s a good day, I’m grateful and I go with it – no analyzing. Walking. Seeing a friend. Going to work. Yay! Unless I’m obviously limping or I tell you “my health is for shit”, most people will assume I’m alright. I want to be okay. Because I’m over it. I am so sick of being sick. You get tired of explaining. My complaints on Facebook would look like this:

Legs hurt. Again. Please send chocolate.

In bed. Watching Downton. How cute are Mr. Carson and Mrs. Hughes?? (I did text that to a friend.)

Full thickness wound. Boo.:(

Really missing morphine! #nostalgic

On prednisone for some weird immune thing. I’m allergic to myself. Feeling manic. (For those of you who have had the delightful/disturbing experience of being on that steroid you get this.)

I put out the happy stuff, not because I’m lying about my life but because these issues can be consuming and my life has other parts – lightness, sweetness. The bad cannot outweigh the good. My family. A great book. A dancey Annie. A funny, weird thing Ben said. Good friends. The TV I’m obsessed with. If I’m not driving or working, I’m resting. I don’t have a choice. I have to go to bed. That gets old fast.

So, what is the point of writing this?

To fill you in, to catch you up on where I’ve been. This is what’s happening. I felt I owed it to you guys, to the kind people who followed me on this journey of writing. I was around until I wasn’t. To say I’m so sorry to my writerly friends that I haven’t been around.

To tell those of you who deal with chronic, persistent anything that you are not alone. As children we’re told we can do anything and we grow up to discover that might not be true. We have limits. We’re told to push past and soar. Sure, yes, sometimes that’s possible. But. Sometimes in order to thrive we need to acknowledge our limits – not in defeat but with acceptance. Sometimes it’s worthwhile to say this is hard. In the muck of it all I can still see the good and make the most of living. Because there is so much good.