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Woman scratching psoriasis plaques

Walk a Day in My Arthritis Shoes (With My Painful, Itchy Feet)

Chronic pain is life-changing - and unless you live with it, you will never understand what it's like. Having empathy is the first step to connection. It's why the "walk a mile in my shoes" analogy is so important. It allows us to look at another person and attempt to understand their world through their eyes.

Unless you live with psoriasis and psoriatic arthritis, you have no idea what day-to-day life looks like. Symptoms are amplified when an extreme flare kicks. I am currently mid-flare and invite you to walk a bit in shoes.

A restless and sleepless night...

My body is exhausted. It is so defeated, I have to give it a pep talk to move. A few days of this, I've grown weary and my mental health seems to be turning against me. My hip joints feel more swollen - and my shoulders too. I can't tell if I'm hot or cold and forget about the stiffness all over. Just call me the Tin Man.

Getting comfortable sounds like a dream but not my reality. Last night, I had restless sleep (if any sleep) and it was riddle with wakings. It was a cycle of tossing, turning, getting up to shower, allow my skin to calm, added moisturizer and back to bed.

If you're keeping track, that's two showers and ten wakings in the 6 hours of so-called sleep.

Starting my day with pain...

This morning, as you can imagine, I was exhausted before my feet even touched the floor. My bed sheets and duvet were covered in spots of blood from flaking and sleepy scratchy. Of course, I scratched in the night and my raw skin proved it.

I woke up with a pain level that is really unfair to be around first thing in the morning. In particular, before I had my first cup of coffee. Everything hurts. My skin, my scalp, my joints. The skin on my face is on fire and feels two sizes too small, my eyes are swollen.

I have psoriasis covering my body and this includes my forehead, eyebrows cheek, nose, ears, and scalp.  I feel the tears welling up, I do not have the energy for this today.

Let's get ready for the day, slowly but surely.

Let's reset with another shower. Shower tends to be my crux when I need a reset - yet it can dry my skin out if I'm not careful. I step in my morning shower and well, this one burns like hellfire. My skin pain levels skyrocket. My psoriasis retaliates to the shower, there have now been too many in a short period of time.

How many is too many you ask? Who knows? Some days 1 is too many and other days I can handle 4. It would seem that my quota has been reached, I switch to cold water to try and cool the raising lesions. I sit on my bed and contemplate life while waiting for my skin to calm down.

Where will I find the reserves to get through today?

Hello cruel world...

Once I've gathered my energy reserves, it's time dress and prep for the day. No makeup allowed, my psoriasis will simply not allow this. I choose loose-fitting clothes, pack a light lunch, some tissues for the tears, and off we go to work on a hope and a prayer.

People are staring. One would like to think that I would be used to this, I'm not. Today, I want to wrap myself in a cloak of invisibility, you would however still see where I have been. Leaving behind the neverending plaque trail behind me. I hang my head.

It's half time for my work day, I cannot stand it anymore, it feels as if my whole body is on fire. My clothes seams are tearing into my skin. I can no longer sit or stand. I call in sick for the rest of the day.

A painful ending to a painful day

I self-talk all the positive motivation I can on my way home. My skin feels like someone has taken an open flame to it and somehow trickled down to my joints and bone. I feel like a walking shell of myself since all I can think about is how much pain I am in.

I get myself home and I cancel plans with friends for tonight, again. The disappointment in their voices is palpable, and no, I cannot just suck it up. Once home, I get my clothes undone. Without realizing, my clothing has become stuck to some of my exposed spots. As I rip my clothes off, the skin comes off with it.

This is the straw that breaks the camel's back. I lay on my bed a cool sheet over my body and I cry, for tomorrow I will need to do this all over again.

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