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Now let’s get this straight…

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Soula's pain demonstration

So, you think you can see pain hey? Or rather your understanding is, if you don’t see it then it’s not there? Please read on because people like you drive me a little batty…

Now I’m going to need to prepare the ignorant readers because they truly are in for a rude shock… so ignorants, grab yourself a chair or lean somewhere and make sure you have a glass of water on hand. For those in pain and who understand and know exactly what I’m about to say then prepare to feel the load lift and the great sense of relief. Enjoy the moment, feel the empathy coming your way and most importantly, get ready to hit that share button.

Ok so some of you have cheated and glanced further down and read my big announcement, my shock news… ignorants, I hope you were prepared and are still standing.

“Pain is invisible!!!”

I know, I know, it’s shocking and many won’t believe it, ever, but it’s true. (People who understand can tune out now but ignorants- you obviously need convincing so read on and don’t groan and ‘nts’ me!)

Seen me smiling? It hurts. Seen me having coffee with a friend? It hurts. Seen me walking up the street?  It hurts. Seen me having a glass of wine? It hurts. Seen my online social activity? It hurts doing that. Heard I went away for the weekend? It hurts… more. Did I email you? It hurt. Were we having a conversation about the weather? It hurt. Did you read my latest post? It hurt putting it together. Did you see my latest art piece? It hurt making it. Did you assess me and express your surprise that I was in nice clothes (and your disapproval because you had to help me put my nice boots back on)? It hurt, (and you’re an idiot!). In fact it all hurts and most of the time.

On the rare occasion it doesn’t hurt it means I’m on the other side of a bad day (because on a bad day you rest, so then you have a good day… but on the good day, you get excited and more active so you end up back at a bad day, so the pain routine is like this: Good day bad day, a bad day then a good day, and on and on it goes, and actually its been that way for me for 5 years in fact!

Obviously many will relate to my anxt, it’s not just physical pain that is invisible. And all sarcasm aside, I’m calling out for awareness and less judgement with some understanding on top. I believe, like me, people in pain do what they can when they can and they do it the best they can. They don’t want to be in pain, it’s not convenient, and smiling or ‘normal’ activity is an enormous effort to cover a monster (well that’s what I’m doing).

So ignorants I hope you learned something from this post. If you haven’t, leave a comment and I’ll clarify further but be warned to turn your censorship on because I’m going to let verbally loose on you!

And just in case you didn’t get it… how about a demonstration:

Got it?

Feedback

23
  • ysabal ysabal

    Love SOULA-Good for my “SOUL” A h!=)

  • Barb

    I disagree. I’ve been in intractable pain for 15+ years. I most resemble the first picture. But in the beginning I didn’t. Now it’s a part of me.

    • Soula Mantalvanos

      We are taught not to accept pain but I understand what you mean by ‘it’s a part of you’ now. As much as we hate it sometimes when something goes bang, it can be for the rest of your life. Thanks for the comment Barb. I hope you’re coping ok.

      • Barb

        I’m not the same anymore. The constant stress that my body has endured from intractable pain has taken it’s toll on me. I don’t think anyone remembers who I use to be anymore. After all of these years the fatigue is the hardest part for me.

  • Kathryn M

    ‘We have a very heavy and invisible burden that we carry. We are having to be always conscious of our physical and psychological states, and be aware if anything is faltering. We are having to constantly battle issues of pain, fatigue and others, but always remain a social and loving member of the family and society and the sum total of this stress shouldn’t be understated. (imported from the web)’
    sums it up for me!

  • Mark S.B.

    Yes it hurts most of the time which means all of the time but us that have ongoing pain must keep smiling. Not much use in having a frown upon ones face, people that don’t know will never know, in fact there’s not much use trying to explain. So I just keep putting one foot in front of the other, moving on ,moving away, moving up and far away from the pain I can go.
    Cause the hurt is just one step behind me, I must move onward.

  • Meow

    Well said

    • Guest

      See me smile, it’s that or die. Give em hell. Nearly 20 years ago it started for me. A.B.I. , C.P.S. also. Experts got it wrong many times, more years of pain.

      I go wheee! every day thanks to brains natural fight or flight response. Sweat like a *** at times in public. Look like a drunk at times, stroke victim at other times, face and hands puff up.
      Then curl up and want to die (the flip side, they don’t see)
      I should have a sign made, “YOU” can be like this in a split second.

      F.Y.I. 6 fractures to pelvis (legs of spine, pelvis front 2.5 inch gap), L5,4,3 fractured plus lots more injuries.
      I’m held together by metal plates, screws and a combo called an X-stop.
      Hang in there 🙂 thanks for your site.

      • Soula Mantalvanos

        I’m sad to read your message, devastating you call yourself ‘scrapmetal’. I hope the site is of some comfort. Take care, I wish you well.

  • Sharon

    Hi Soula, thanks for your fantastic write up. Struck all the cords with me. I would love to take a holiday from myself for a week but alas, I realized I have to take my body with me. I’m constantly try to keep a smile on my face around others so not to bring other people down, so people think hey she is doing ok. But its so wearing trying to keep up appearances (so to say) because sometimes your screaming on the inside. Again thanks for write up

    • soula

      Hi Sharon, thank you for comment. I’m actually writing to you while on a break from myself IN VENICE but I must admit I’m cheating. I have my extremely supported superman hubby with me whom I would not be able to get through the day let alone travel and I’ve had some great nerve blocks and cortisone shots. It’s still difficult, you never get away, we’re just not built that way. Other travellers can’t figure out why I’m slow up the stairs or perhaps why I’m not helping my husband with all the bags and walk next to him like a queen!!! It’s awful but we must persist. We do what we can and when we can, empathy through comments even is so strengthening for me (hopefully for you too). We have to find a way to shut the judgment out… Or educate! Write posts and spread the word… I’ll be blabbing. So great to read your post.

  • Marilyn Lock

    This raises the question how would you draw or paint pain? I can only think of my response to it. My learned response after 18 years is sensory and at times emotional rather than visual. The sensation of pain ilicits a judgement of myself, what did I do or not do for it to be back again? (This is reinforced by my husband.) The words for these sensations are :- dull ache, sickening ,dragging, weakness and tightness.The impact these sensations have on my ability to continue with tasks and activities puts fear in my mind.
    Will this go away soon. so as I can get on with my life?
    The emotions include denial, despair,anger and impatience. I feel all these facets of pain. Perhaps if I could draw or paint the pain I could somehow symbolically erase it. I cannot erase my feelings or my sensory awareness as these are perceptions that have made me the compassionate and understanding person I am today. We should never feel wanting if we cannot eradicate our chronic pain. We need to nurture ourselves as we have nurtured others .
    Chronic pain is not acceptable nor tolerable for anyone. So I ask myself to keep feeling and to find a way of life whereI can be who I am.A loving and compassionate human being ( ie who is truly connected to her feelings and senses the feelings of others). I live with chronic pain most days of the week and have come to the realisation that “it is what it is.”

    I believe that the suffering of chronic pain can only be truly understood by those who ongoingly experience it.

    kind regards, Marilyn

  • Jodi

    Well said Soula, and I agree with Zabrina the drawings are great visual representations.

    • soula

      let me know when you want to share your story jodi, write it and i’ll make a post about it. great for awareness sake. hope you’re well.

  • Zabrina

    I smiled when I saw your drawing. before I even read a word. what a perfect visual expression…. or truth rather.
    I had two mental health assessment nurses here last week. one had the nerve to tell me ”well you look fine”! I told her it is people like her and comments like that that drive us crazy.

    • soula

      Did you say the one that told you you look fine was a mental health nurse? well she isn’t going to get very far. narrow minded, inexperienced and clearly uneducated in mental health, or any pain for that matter. Thank you for your beautiful message Zabrina.

  • Workcovervictim

    Great write up, well said, Soula! Love the drawing [a picture truly says a thousand words here!].
    Keep kicking butt!

    • soula

      With cyberfriends like you Workcovervictim how can I not kick butt? Your energy inspires me to keep on trying to help others, as YOU DO.

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What is Pudendal Neuralgia (PN)?

Most simply put PN is Carpal Tunnel in the pelvis/buttocks. Compression of the Pudendal Nerve occurs after trauma to the pelvis and is aggrevated with pressure. The pain is often described as a toothache like pain, with spasms, sensations of tingling, numbness, or burning. It can be very debilitating.

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