Thursday, April 4, 2013

Pain & Shame

I got the nerve test results from the neurologist. Not good. Basically, a vertebrae in my neck is fucked up (not currently sure how or why) and has been destroying the two main nerves that lead to my hands. The pain is the result of the damaged nerves misfiring. I’m currently at the “mild to moderate” level of damage/pain. I’m going to have to go in for another MRI so they can try to figure out what, exactly, the injury in my neck is and if it can be helped. The nerve damage and pain are only going to get worse. Which is…mind blowing.

See, I’ve been in pain every moment of every day for the last, god, seven-ish years. Morphine, Vicodin, Oxycodone,…none of them even touch the pain I have. I’m currently on a patch that pumps Fentanyl into my bloodstream on a constant basis. Fentanyl is 100x stronger than Morphine and I’m still in pain. (I seriously don't know how that's medically possible!)  I’m also on the max dosage of nerve blockers. And the pain in my hands is like nothing I have ever experienced. Ever. Even while on all that shit, the pain - when flared up - is so bad that I have to bite down on a pillow and scream into it because I don’t know what else to do. I can’t even wrap my mind around what “moderate to severe” is going to feel like. Or how to survive that. So, yeah. Not the BEST day ever.

Then today in the middle of an IM conversation something just hit me in a vulnerable spot and I’m currently crying over how imprisoned I feel by my body. How I've chosen to be imprisoned by it. How many times I’ve said “no” to things I desperately wanted to say “yes” to because I didn’t want to burden others with my pain and weakness. I don’t want to hold people up because I walk so slowly. I don’t want them to hear how hard I’m breathing or see how much I’m sweating when I push my body a little bit further than it’s used to. I don’t want to make people stop because I need to sit down again and again. I just…fucking HATE how inconvenient my body is to others.

So fucking afraid of other people seeing how truly broken I am. Saying “no” again and again. Telling myself that ONE DAY it’ll be different. ONE DAY I’ll be strong and healthy and have no pain. But I need to truly, truly, TRULY accept the fact that that bullshit magical thinking will never come to pass. NEVER. And, I guess, that’s what hit hardest with the neurological results. “It will only get worse.” It will only get worse. So may years feeling so fucking ASHAMED. Ashamed of this pain and this weakness. Ashamed of how much help and effort it requires. So, instead, I curl in a ball and hide. Too afraid to trust that I’m capable of so much more. Too afraid to trust that people can adore me enough to see my weaknesses and my pain and my shaky legs and gasping breath and sweaty face and love me anyway.

I need to learn to live with my limitations instead of allowing them to keep me motionless. Instead of waiting for them to magically disappear. Because, let’s be honest, they won’t. They’re here for good. And I can either figure out how to survive with them or just allow way too much of life to continue passing me by.


  1. *hugs you close*n Oh god I am so so sorry this is happening to you. I know how much pain your are in but please be careful with your patch. My mother also had them and was in horrific pain with her back. She died of an overdose almost 8 months ago. I would hate to see you go like that. You are too amazing.

    I know how you feel about being trapped. Both my mother and I feel/ felt that way. I'm not in as bad a situation as you but about a month ago I was planning for a trip and I just sat down and sobbed because I knew i wouldn't be able to do most of the things I wanted to. It had never hit me before how imprisoned I am in my own body sometimes. I almost canceled the trip. To be honest if I hadn't already promised a friend we would go and booked anon refundable hotel room and train ticket I might not have gone. I went though and had an amazing time. We didn't do as much as I wanted and I had to deal with using a walker for the first time, but we had fun. It was one of the first times I really let my guard down and was like ok I can't do this and this but i can try to do this. I too feel the shame of breathing/. sweating/ needing to stop. I don't know, i really this it was my friend who did it,but I was able to allow myself to take care of me on that trip. I know how hard it is to do, and i still struggle with it, but I think everyone needs to be like, ok my body is more important than anything. The whatever it is is still going to be there and i can take all the time i need. It might mean having to leave for something super early or spending way to much on cab fair like we did, but in the end it is so so worth it. If you ever want to talk about any of this let me know.

    i think you may have my email but if not it's

    Sending you a billion hugs and kisses from amorous angora rabbits, snuggly sloths, and cuddly kitties,

  2. I am so sorry Heidi.
    I can't imagine the grief you're feeling right now. A million jedi hugs to you,
    Pen Pal Carrie
    PS - I think dear old fallable me sent a card but I can't remember! If I did, please don't feel pressure to write back. I'll keep them coming.
    If I didn't please laugh heartily at me and my brain and know that I'll be sending another along.

  3. Probably the scariest thing in my world, is when I stop and look at the pain and the broken and know, deep down inside that it is never going to go away. It might wax and wane, but it will always be there. I /hear/ you. I SO VERY hear you. It's a fucking brutal thing to accept the limitations, and possibly even worse.. accept that something that was no problem yesterday, isn't even on the table today, but might be back tomorrow. But might not be. I dont have a lot of solutions, but I'm mostly just saying 'you're not alone' and <3.

  4. Beautiful! As a fellow super fat wirh chronic pain/ health issues and aome disabilities, I identify so much with this. Love & support!

  5. I have a lot to say,as I'm just catching up on your blogs now. There is no shame in your pain. Also pain management post rny can be very tricky. Because I also belong to your FB page, I don't know if you'd prefer I privately message you here, or address some of things you put in this blog, on another response here. Let me know... I hope you are doing well with your internet sabbatical, and hope there will be more blogs when you are done. I think you are awesome... Lisa..