So I decided to finally open up to my significant other about how painful it has been for me in the last couple of months. I was hoping to get assurance, to get comfort, understanding even esspecially since my Dr appointment today came with the news of the spinal cord stimulator. I was crushed, heartbroken and distraught, and no one could see my pain. I finally opened up I was told to buck up jokingly But to me this was not a joke. then when I mentioned I never said buck up when they were in pain I was told no one person's pain is worse than others. It was at this moment that I knew they would never understand. I'm so I wrote something that I would like to share with you and perhaps maybe you guys will understand..

I am tired, & I feel so all alone in this uphill climb of Mount Everest.
It would be better if that I at least had someone, anyone who can understand that the higher I get up the mountain the harder it becomes to breathe and all I really need is for someone to hand me an oxygen mask and tell me its going to be alright

But instead I keep pushing forward and go higher despite the struggle. I only hope someone will see my pain before I pass out from trying to not show anyone my plunder. Ftom trying every waking hour to just... breathe.

I am resentless, I trod on in hopes that one more step will bring me closer to salvation, but to no avail I never find it.

The funny thing is, I thought I was strong. going a day without weakness and raw emotion creeping its ugly head through the snowy haze.

But I'm not.

For every step higher will bring me closer to my demise. For soon the air will be getting thinner, the trials harder, and if I don't tell someone fast there will be no one there to give me oxy gen when I hit higher altitude.

So I decided to share, and instead of assistance and understanding I get buck up and plung forward.

Can you not tell I'm in pain?

Can you not see I'm gasping for air?

But they can't for i am NOT on a mountain climbing Mount Everest.
Though I am fighting an almost insurmountable battle.

And I am NOT deprived of oxygen and gasping for air,
though I am deprived of strength and clenching to every fiber of my being to make it through.

I do not live for the day. I live for those briefs seconds
When the skies part and the clouds allow the Sunshine through, like the Red Sea only To be put back again in an instant...

Those fleeting moments that pass others by without a care. Without them ever knowing they just witnessed a miracle. Although they don't see I am grateful for them and their ability to just...be. And my ability to make it another day unnoticed by all that the miracle they always wished to see just passed them by and it was ...ME!




ability abiability to just... Be. And my ability to make it through another day unnoticed by all around that the near clay always wish to see just passed them by... and it was me.

That is beautiful, Mandi.

The air is thin up here, but there are some of us who can hear you. I'm looking for the oxygen too, and when I find some, I will share.....

LOL, thanks I soooo needed that laugh and bit of humor. Thank you. Thank you thank uou I believe rhe sun is starting to shine through. wink wink

Oh wow Mandi, you nearly made me cry. Beautiful writing… Yes, I do understand. I completely understand the pain, and being strong willed. There have been many, many times that the pain was so incredibly bad that I didn’t think I could will myself another step. Or wondered if I could quit tremoring long enough to take that next step. And to have a significant other that isn’t being supportive is very tough too. I’m truly sorry. Yeah, I don’t think “buck up” would have flown over well with me either. Buck up hu? They don’t even know what they’re saying Mandi. I have sleighed many dragons in my day, and this was one that I have not been able to conquer, but rather I am trying so hard to learn to live with and make peace with.

I am learning that the body will win every single time. You have to listen to your body as much as you can and rest when you need it. To this day my mind will be saying let’s do these 100 things and my body will eventually win by screaming at me with pain, and I have to settle with the 90% of the things not accomplished. For me it has become an exercise in patience.

Hang in there Mandi! You’ve found a good group of folks here that know exactly where you’re at. You are not alone hon. If nothing else, perhaps you will find comfort in that.

Get them to watch this http://www.youtube.com/watch?v=MviVcjWZDts
amd maybe read this http://www.publications.parliament.u...13070971000003

Mandi, I'm amazed at the beautiful writing that comes from so much pain.
To people in this group and to me it makes perfect sense and sometimes we have to vent especially to someone who can understand just to cope. It can get so scary too.

It's too bad this group is just online, but I believe the thoughts and feelings for each other are real.
I have been hurt by significant others, their words, their actions, the rolling of eyes as if you're just really milking this etc. But then I calm down later and realize that Vraeis right that they don't know what they're saying.
My physical therapist (she was the first to recognize CRPS) told me VERY good advice - "You must be your own best advocate with this".

Lovely mandi, I think writing it all out is very therapeutic...

I wrote this a while ago. Makes me cringe a bit now tbh lol, but at the time it was cathartic and did help a lot: I had been playing the Moonlight Sonata, in lots of pain, and having a wee cry all the while...it is a sad but beautiful piece of music. I love Shakespeare, but I must apologise to him! It was just the mood I was in...

The Beast

If music ease, or soothe my pain, then play.
And play, and play, and play again,
If thou can bear my fear and woe just one more time.

I see the beast upon my skin; it gnaws upon my very bones
Both day and night. So play, cease not.
Still not my hands upon the keys.

Yet sweet airs, as love, and gentle deeds
Too short a time do still his cruel watch upon me;
But try I must; play, and hush the beast.
Mere pause, for wake again he surely will.

So play, play on, and tread but soft upon the stair.
Play on I beg, and gently lull the beast to sleep this night.
..........

Bram.

I hear you. I care. Keep coming here to NT for support. All of us who have pain and unresolved medical conditions understand what you are going through. Bucking up is not what I would have wanted to hear at all.
Your writing is beautiful, and you made me tear up. I will keep you in my thoughts and prayers. ginnie

Hi mandi! A very nice piece you wrote. So sorry that you are suffering from this beast and lack the support you should have. I am very fortunate and thankful that my husband is very supportive. He has seen the changes in me and witnesses the daily pain and struggles I have. Thankfully he sees it and doesn't turn a blind eye. Not everyone in my life is like him. I have lost friends and had to stop working at the end of 2012. My employer did not see the struggling, I tried my best to hide it and what they saw they ignored, they were pretty much jerks about it all. We all have dealt with the stigma "if you can't see it then its not there". Some of the folks in my life understood a little better when I showed them the McGill Pain Index. One of my sisters really didn't get it until I had this crying conversation with her.

I hope you can somehow get your significant other to come around and understand better. You know you will always have love and support here, because we all get it!!!

All the best,
Nanc

Most pain in life can be pushed through, can be used as motivation. There are some conditions where the pushing through doesn't have an end, we can only avoid or push in to it. Those that do not experience an unending expanse of pain will almost always have an extremely difficult time understanding. I say allow them their ignorance, for that which we are speaking is a nightmare.