I'm okay

There's a popular spoonie who goes by the name of Mrs Welches on social media. She regularly posts pictures and posters that resonate with me. Today I saw one that I am sharing here explaining what it means when we say, "I'm okay."

I would like to elaborate on what that means to me, since its invariably my response to a "how are you" these days.

I'm....
Overwhelmed
Killing myself
Angry

Yearning

I am Overwhelmed  by the effects that TN has had on my life. Overwhelmed by the pain, the constant, excruciating, ever increasing pain. I am overwhelmed by the decisions that I find myself needing to make regarding my life, my future, my identity. I'm often overwhelmed just at the thought of having to do simple tasks, taking a shower, brushing my teeth, opening the front door when I can see that the wind is blowing outside.

I am Killing myself daily. Not literally, but figuratively. I am killing myself just trying to work for more than one day at a time. I'm killing myself trying to push through the pain on days when the kids need me to be there for them, helping with homework, going to a performance, supporting them at an event. I'm killing myself emotionally, trying to be strong until the kids go to bed each night just to give them a sense of normalcy.  It may be hard to believe, but it is killing my soul just knowing that I'm losing my ability to fight through the pain as well as I may have done last week, because this week is just so much harder and I know that next week will be worse.

I am Angry! I am filled with rage at this body that I possess. I am no longer as angry as I was before with doctors or colleagues or people in my life for not understanding and believing me. I'm angry at this disease. I'm angry because of what it has taken from me. I'm angry because I can't sleep, I can't eat, I can't talk....when the pain is at a maximum. I'm angry that it takes from me simple and important pleasures, like physical intimacy with my husband, kisses from my kids or my parents, long conversations with good friends. I'm seriously, dangerously, angry right now. The anger obviously is the only thing that fuels me enough to go on some days, but anger of this intensity can't be good.

I am yearning for so many things. I'm yearning for the me that I was before all this started. I'm yearning for the dreams that I have had to give up on and for clarity in making new ones and having the courage to attempt to achieve. I'm yearning for a few minutes, seconds even, of relief. Most people with classic TN do not have constant pain, unfortunately, I am one of the many who do. I am yearning for a night of uninterrupted sleep. I'm yearning, and aching, for comfort for my husband and kids as every attack and flare breaks their hearts in so many visible ways. I'm yearning for a cure for all of us who suffer this horrible fate.

So if you ask me today, how I am doing. I can honestly say, I'm okay. I like Mrs Whelches description and explanation of what she means when she says it, this however is mine. My explanation can't fit onto a poster, and I believe that hers might not either. BUT, I am grateful for those like her who dare to say the things that resonate so well with all of us suffering with invisible, chronic, illnesses and pain. I'm proud to be a fellow spoonie with her and continue to make it my mission to educate and inform others about it through my own social media presence. Some days though, I'm just okay  and those are truly the days that I find it harder than most to fulfill that mission.

For my fellow TN fighters, warriors we may be, but remember, it's ok not to lie when asked how you are today, it really is ok for you to be  okay. 

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader