It’s a Hard Thing to Hear.
When we are first diagnosed, we can feel like we were given a non-death death sentence. CRPS is this thing that we’d almost wished we were diagnosed with something terminal instead. It has been dubbed “the suicide disease” for a reason. And it sucks!
To make it harder, the people around us are thinking and saying, “It could be worse.” And if you are anything like me, you wanted to smack them upside the head.
Well, after six-years I finally believe them.
Here’s what I did, and of course, just because I did it doesn’t mean you have to. It’s morbid, I admit. And I don’t recommend it for the faint of heart.
Here it is: I started watching TV, documentary films and online videos of death and disease.
At first, I thought something must be wrong with me to want to see this stuff, but it made me feel like “it could be worse.” I started to say it to myself throughout the day. “It could be worse” became my mantra and a reminder to live life for the living (In other words, it’s not about me.).
Much of the death and disease out there is hard to watch or hear. And many people will say that it’s worse to put negative imagery and words into our heads. Trust me, I agree that we need to stay positive but with CRPS there’s only so much positivity we can take when faced with such a horrible and torturous condition. Notice the but, it’s very likely that we can also feel that “it could be worse” when we focus on the positive only. So, don’t try this at home unless you feel you can handle it. Personally, I used to watch some cops-n-robbers stuff before I was diagnosed, so the leap to the macabre was not too far.
CRPS pain wears us down over time. It’s so incredibly hard to deal with let alone function effectively in our lives. It’s so hard that we can become depressed and suicidal. There’s SO much that we lose. I had to grieve the life I thought I was going to have, and it has been hard to reinsert myself into life as healthily as I possibly can. I’ve had to redefine myself and find meaning in life with CRPS. No easy task but I’m living proof that it’s possible.
Keep on keepin’ on,
P.S.: Let’s stick together in this. How do you cope and hope with CRPS in your life?
“My” Illnesses & Disorders
I have a problem. I have too many labels and want to bring them out into the open. Well, I’m saying them in order to conquer them, if that makes sense. I’m not doing this for pity’s sake. I’m processing the place I’m at in my life right now.
Many people think that labels cause more harm than good. I find them helpful to better understand what it is that I’m fighting to cure. Especially, with the “incurable” illnesses or disorders. I’ll be happy to let go of every label when symptoms cease to persist.
So, I was diagnosed with Complex Regional Pain Syndrome (CRPS), Postural Orthostatic Tachycardia Syndrome (POTS), Psychogenic Non-Epileptic Seizures (PNES) and Fibromyalgia all over the past six years. I can no longer work or do much of anything but sit at my computer for a bit, lie down, and occasionally get out of the house.
It’s a seriously stressful drag. To add fuel to the fire (CRPS joke), I find out soon if I have Type 2 Diabetes with complications, and a few days ago I found out I have Hypertension, Liver Disease and Stage 2 Kidney Disease.
And adding to those the recently confirmed Clinical Depression, Post Traumatic Stress Disorder (PTSD) and Dissociative Identity Disorder (DID) and I’m a mess.
That’s 11 labels of illnesses and disorders. Really!?
Labels are difficult for me. I don’t want to “own” any of these things. I also don’t want the stigma in my life. I don’t want to speak these curses into my life. I don’t want to give them any more power, yet I contend with symptoms daily.
This battle is logically resolved by believing what the Bible says about healing as a child of God.
Easier Said Than Done
As I have been traveling down this narrowing road, I seem to have lost some of my faith and belief. I believe that others can be healed whole-heartedly, but when it comes to myself, I’m struggling.
I must move the faith and belief it takes to be healed from my head and into my heart—into the here-and-now. What this really means is that I have an opportunity to go deeper with God. So, I’ll continue to pray, I’ll listen to some worship music, I’ll listen to some solid pastors, and I’ll spend time with God. And one day soon, I’ll be free.
If you are struggling with illnesses and disorders and can relate, let me know. There’s no way I’m alone in this.
All messed up,
P.S.: Transparency takes vulnerability and courage. So, I’ve just jump off a cliff here and we’ll see where I land.
Not Myself Anymore
CRPS has stolen my identity. I never imagined that CRPS, POTS, PNES, DID, et al. could change me so much—and not in a good way. I have become paralyzed in the pain. I hardly leave the house because I’m afraid I’ll have a seizure and/or fall down. I’m afraid of the pain that comes after walking the entire grocery store. I’m afraid to go walking around my neighborhood or going to the ranch to see my horse. I’ve become a shell of the person I used to be, and my children want their Mom back. I want me back.
I used to command the fear in my life. I pushed through and tenaciously succeeded at everything I tried. Today, the fear commands me and I have no drive. I am not myself.
So, what’s next? I’ve been told by two people I trust in the past week that I need to stop worrying about it all and just live.
I’m going to pray:
Father God in Heaven, You are my Rock and my Light. You work with me through life and You carry me when I’m weak. I feel I’ve lost my self, Lord. It’s hard to believe that I’m in this place of fear and paralysis. Forgive me, Lord for allowing myself to get to this place of dying, not living.
Take my hand, Lord God and guide along this narrow, righteous path before me. Sing me songs of love that I may care and love myself through this crazy time. Papa, I want me back. Obviously, I will never be the same, but I know I will be stronger physically, emotionally and mentally. And I know from experience You will finish the job You started with me. I know I’m just in process of something wonderful. A birthing of a new me, a new creation, filled with Your Holy Spirit and love.
Thank You, Jesus for walking me through this process. Thank You, for teaching me to just live. Amen.
I know I can do this,
P.S: I feel like I’m at my rock bottom. It’s been years since I’ve ventured back here, and the only place to go is up. Whew!
CRPS has stolen my identity. I never imagined that CRPS, POTS, PNES, DID, et al. could change me so much—and not in a good way.