It is just life y’all.

IMG_0411I have a friend whose husband is in the thoroughs of the unbearable pain that is trigeminal neuralgia.  I have been sitting on the side trying to be as supportive as I can be. But hearing the amount of pain he is in just takes me back.

The images, the sounds, the feelings. They were all so awful and I was not even the one feeling them. One day a week or so ago, we were texting back and forth and I was quickly reminded why this is called the suicide disease. There can sometimes feel like there is no out and like no one believes the incredible amount of pain your spouse is in. It is awful.  An emotional gut punch again that had me pulling over to the side of the road. A lump in my throat and tears.

TN is the bane of my existence and just because I don’t talk about it doesn’t mean it is not there. It has moved into my home in a different way now. My guys TN is now what you could call livable. He functions in his daily life. He works full time (plus actually), he goes about life as best he can. He exercises moderately…not at all like he used to. He just cannot. He celebrates birthdays, he laughs and plays games. But he isn’t the same.

The TN pain is not gone. He lives daily with pain and takes medicine to live as normal as a life as possible. What plagues all of us now are the side effects of his daily meds IMG_6025to make his life manageable. He hasn’t been med-free except for a very short time soon after the MVD. He moves around dosages according to his pain tolerance. He adds in meds for when it is really bad (December – February). But the meds he takes….they are awful.

Look up anti-seizure meds, side effects and long term effects. You will get a distinct picture of the life we live now. It is hard to say, but he isn’t the same. We are not the same. It is not always easy or even pretty all the time. But I love this man. He did not ask for any of this. But none of that makes life easier for my girls, my guy or me.

And sometimes he gets bitter, or I get bitter or my girls get angry and thankfully we are good at reminding each other of the whys in those times. Our normal is a new normal and an okay normal because it is still so much better than where we have been or where we could be at the drop of a literal hat.

My friend. Her husband had an MVD a year after my guy. He was perfectly normal and fine. Then one day he wasn’t. That is just how quickly it can change. Remission is NOT guaranteed or promised. TN SUCKS.

We search frantically still for answers, pills, supplements, oils and look for laws to change, the right organizations to notice. He used to see his neuro in Indy once a year and we are now into twice a year. He winces his pain in his face and it makes us all nauseated or sometimes we just have to ignore it all together because it hurts him we notice his pain.

But more we live in fear of that hat dropping. That takes it toll on him more than me. The anxiety of not knowing if or when it reaches that state again. Or fear of the time his pain shifts from a daily 3-5 to a daily unbearable. To scared to hope for a time when you don’t have to rank his pain.

But I live for and with love. I cannot live in the what if. I am so miserable there and when I am miserable I make everyone around me miserable. But it is easy for me because I don’t live with the chronic pain. So I try and remain positive and try hard to not dwell on the side effects of the meds as best I can. I try and love my guy the best I can.

SAMMY KERSHAW – LOVE OF MY LIFE

As we stand together
I promise forever
‘Til the day that I die
You are the love of my life

You are the love of my life
You are the reason I’m alive

He is the love of my life… – MR

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2 thoughts on “It is just life y’all.

  1. So well written ❤ You have captured the feeling that I, too, have. Different disease but very similar underlying feelings as the helpless bystander. Living with someone who has never ending illness that has a horrible "what if" prognosis that may or may not ever come to be. It is so hard to take it day by day and look for hope in the "good" days but that is my goal. Now, today, is where my power is and where I strive to live. 🙂 I almost grabbed the quote you put at the end of the post I made last night. It is so very true.

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