We’ve all had itches, but you haven’t really experienced itch unless you’ve lived with a Prurigo Nodularis (PN) itch. Over the last two decades I’ve been on only what can be described as ‘a discovery of itch’ and what a ride it’s been. I could write a book! As you aren’t here to read an encyclopaedia on itch, let me try to break down my experience, here goes:
What does my itch feel like? Stinging, burning, painful, like I’m being stabbed by millions knives, as if insects with many, many, many, many little legs are crawling not on top of my skin, but if you can imagine it, on the underside of my skin. At its worst, it can be and has been all of the above rolled into one “delightful” medley and in my case it’s tip to toe. I’ve found myself screaming “make it stop”, “please help me”, “make it go away”, “take it away”, “I can’t take it anymore”; more times than I can remember.
How often do I feel itchy? For many years I lived with an incessant itch, day and night, that was pretty much my existence. Then not satisfied with the misery it had made my life, PN would throw in what I call “attacks”, when an attack occurs, the itch is pretty much in feeding frenzy mode and off the scale. How long do these attacks last? Anywhere from a few minutes to hours. How often do these attacks occur? Whenever PN decides it wants to play, night times have always been particularly challenging.
What has it felt like to live with a Prurigo Nodularis itch? It robbed me of my mental and emotional peace. It has taken time from me I will never get back. I’ve been made to feel powerless and weak, no matter how hard I tried the itch won every single time, next time has never been different. Even to date, the itch always wins. It has made me feel as if my life force is being drained relentlessly. It has made me feel very lonely…
Why can’t I just be a big girl and use my will power to stop scratching? I’m reminded of the line from ‘Lord of the Rings’, when Gandolf when faced with the Balrog (a powerful demonic monstor), says “this foe is beyond you, run”. This foe called Prurigo Nodularis is beyond any well of mere will power or determination and there is no where to run from your skin, you are captive in your skin. No, I do not “enjoy” ripping my skin to shreds and no “it is not a habit” and it most certainly isn’t “in my head”.