I want to walk this life with grace, love and peace. I want people to think of me and think wow she is so strong and handled that so well. But there is a huge large gap between what I want and what has actually happened. And hate to sound even more bitter, but I am not sorry.
Instead lately I feel like I spend more time hanging out at the corner of bitter and angry. I am not even the one that suffers from tn and I am peeved. My reasons for being peeved are numerous and so very strong.
I imagine I am somewhere in the land of caregiver burnout where I think things that make me feel bad or I shush and rush out of my head. Or I think of people who have worse. People say…..like my husband. And I go into this world where I recognize none of this is about me.
But my gosh my life. My girls life. People ask me how they are doing. People ask me how he is doing. Rarely do people ask me how I am doing. I don’t need it either, it just gets lonely. I spent 50% of my life hoping and praying life gets less painful for him and I spend the other 50% worrying that my girls know and feel my life and desire for them to lead as normal of a life as possible.
Can you do the math there? I fit in there no where. As well, this is bitter and cynical me but my true people are few and far between. That means when things get bad or I am on mom/wife overload and I could use a hug or a phone call or just a reminder I can do this often the only person there to pick me up is myself. The people I think are my true people. The ones that will always be there. They are no where. They don’t call and they don’t text. I get angry and upset about that because they are supposed to be my true people.
But then I remember I am going on one of year of this life. And honestly five if you really add it up. No one wants to hear about the same whiny story for a year, let alone five. So I don’t blame them. It is what it is. The life of being married to someone with a chronic pain illness. That I suppose makes me needy. Or maybe that is just my own insecurity.
Yes that. Before tn I was not insecure. But now I am. I worry am I dominating too much conversation with tn? A constant inner dialogue plays in my head where I tell myself to shut up. They are sick of hearing it. If they really cared they ask. And maybe that is true, maybe not. Who knows? I know I don’t.
Then you have my relationship with my husband. My go to guy. Who I am fearful of burdening with my stresses and loads. I know well the martial vows we took. He will be there for me I have no doubt. But I can’t. I have to keep life as simple and easy as possible for him. That is hard though and I feel like I screw up daily.
I bought into the surgery will fix it world and yea it didn’t and I am mad. I want my normal life back. I didn’t ask for this. My husband didn’t ask for this. My kids didn’t ask for this. And yet we are in this. Talking so much about tn now that at this point we don’t even need too.
So yea I guess this is caregiver burnout. I am so worried. I am so tired emotionally, mentally and physically. I am so ready to just sit it on a shelf even for a little bit. But I can’t. This is my life. This is his life. This is our life.
He tried a treatment last week. Good news we got a diagnosis of occipital neuralgia and it helped. Bad news it helped for two days and he was diagnosed with occipital neuralgia.
There are no words. There are a few prayers and hopes that it will get better. I believe in love and I believe in faith. Right now I am struggling with the idea of love winning and I believe that is because I am losing the faith.
And if you read this I imagine you are one of three things….
1) sick of hearing about it
2) think I am dwelling on it
3) want to be there, but don’t know how
I will tell you I am not gonna quit talking about it anytime soon. If you are tired if reading it then don’t. Defriend me, unfollow me if you need too. I don’t care. And if you think I am dwelling in it or living in the past or whatever go ahead think that. I am okay because I don’t really care what you think. Watching my husband living with this disease for the last five years is the worst thing I have ever witnessed and continue to witness. I don’t need people who don’t understand that around me anyway. As well, I would not wish it on my worst enemy so I will be grateful it isn’t a struggle you have to understand. Finally, I get that last thought. I do. It is hard to talk about hard things. What do you say? What if you say the wrong thing? I know. I live with that feeling daily. All I know is what is like to witness this disease. I have no clue of its actual feeling.
It is what it is. It sucks. I am gonna talk about it. There are some really amazing days and with those amazing days there are crummy ones too. But I am not sorry for hanging out at this corner of bitter and angry or being so brutally honest.
Tn taught me to wade past the crap and find the real.