The darkness…

…sometimes, all I can see is darkness. Chronic, massive pain kills all the color in my world. It changes the sweetest sounds into the worst screech. It robs the taste and smell from my senses. Everything is eventually dulled until it just fades to black. That is what the hopelessness of chronic pain looks like for me. A slow decline where I feel as if I am drowning in a pool of darkness.

I’ll be the one to say it. I don’t necessarily want to die but I’m sick of living like this. If that means I die tomorrow, I’m okay with it because I am tired of living in this darkness. But let me explain what this means.

No. I don’t need to be admitted.

No. I’m not crazy.

No. I haven’t ‘given up’.

No. I’m not hysterical.

No. I don’t want your pep talk.

~~~Seriously- save it.

No. I’m have not planned my death.

No. I have not set a ‘date’.

No. I will not apologize.


The darkness I’m referring to is the blackest when I don’t have a ‘Next’ plan. Honestly. I have only survived this far by always looking to the next treatment option. What’s the back up plan? A next step. A process on what to do next. I’m not asking for anything that everyone else wouldn’t want if they got to walk a minute in my shoes. Not a mile, just a minute!

It’s been a rough go. Not gonna lie. The future for me will always be spent trying different treatments. It’s a series of trial and error processes and constant movement of trying new procedures. I feel this shift where it’s a fade to black each time I exhaust another doctor or a new treatment fails.

I’ve had this written and edited and rewritten for a couple months now. I debated not posting it at all but it needs to be said. I need to say it for me and I know my fellow PGAD warrior Hope and Fellow IC warrior, Tori are also struggling with the same deep darkness. Their recent struggles have given me the strength to finish this blog. I love you ladies and I thank you for sharing your darkness with me. It makes mine less scary and, some how, less dark.

Just because I see and feel, taste and hear darkness, Doesn’t mean I am going to kill myself. It means that I just want to live pain managed. That’s really not too much to ask for.


Lilly Sue

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