CIDP is getting to me
I’m not sure how to keep going on some days. I’m usually an upbeat person but lately I just want to cry. The burning pain and not being able to walk is taking its toll on me.
Looking to share knowledge and supports with each of you!
Hi, my name is GatorHater. I'm here because
I began falling in 9/2020 progressed rapidly and now bed bound 90% of time. Loss muscle mass, fine motor skills, ability to walk, care for self independently. Have constant numbness, dead weight heaviness, neuropathy, constant feeling of being squeezed like I have a body cast on from chest to pelvis. At first dx with CIDP after a year of IVIG no change actually worse as time progressed. Then dx w Conversion Disorder/FND by a different dr but my original neurologist says no. Now I’m recently dx w Hereditary Spastic Paraplegia but I just don’t know anymore. So I’m here to research and advocate in hopes of true dx and treatment. 🤨#MightyTogether #HereditarySpasticParaplegia
Felt so alone! Yesterday was a bad day! I joined CIDP! Wow so so many of us !
Part 1 of 2 This is the first piece I’ve written in years. After becoming paralyzed again, I’ve gone through a period of deep sadness and anger. I couldn’t bring myself to write. I couldn’t inspire anyone with my words. In full honesty, I couldn’t help others, because I couldn’t help myself most times, or was too consumed with the severity of physical illnesses.
Recently, I’ve began writing about my journey, the emotions that come with it, and learning to swim amongst the waves that are sure to come. And they do continue to come, as this is life—a paradox of amazing, cruel, beautiful, sometimes ugly; unpredictable in nature, yet perfect in its timing.
It never ceases to amaze me how grief can be the biggest wave to crash over you, as if it knows the time and space it occurred, forever etched in your life. It becomes innate in that it never forgets, no matter how much one tries to erase it. Learning how to surf the waves is an art and a skill that is never mastered, yet a constant lesson we learn over and over again.
I would’ve been walking 12 years on May 7th.
Each year I thought it would be easier to endure, or I would carry the weight of this with greater ease, but in all honesty, it isn’t the case. It’s a constant reminder of what was and what could’ve been. It’s a flood of memories, good and bad. I can’t help but to think of all the things I could’ve done in the past 5 years. I’d have my career. I’d be able to lead a normal adult life. I’d have a home of my own and be able to take care of my family. Maybe I’d be married and have a family of my own. I don’t remember a day in my life where I felt what being healthy is like, but maybe I’d even be in remission. Then, I carry the loss of these things, and much more. I struggle to put it into words, but to the best of my ability, it’s as if I’ve been robbed on such a deep level, and it’s my own body that did it.
But for some reason, this has been and is my life right now, and I don’t know for how long, because this is life. We don’t know what our fate is. I lost the ability to walk, though able to move my legs still, in January 2018. My CIDP unfortunately progressed, and I’ve been paralyzed since March 2021, on top of being very sick. Though it is preached to “be positive” in the wake of life, chronic illness, disability, and such, I do my best to honestly honor my emotions. I would not be honest if I said this time of year doesn’t bring me immense anger, frustration, and sadness. I want to run away from my own body to escape the absolute physical torture I experience day in and day out from these illnesses and the mental anguish they bring. The heartbreak is beyond any words I can conjure up or even attempt to describe. And it’s OKAY to feel and honor these emotions, in order to navigate through them, learn, and grow.
When I was 16 my health fell apart, and one of the illnesses I became sick with is an autoimmune neuromuscular disease called chronic inflammatory demyelinating Polyneuropathy, or for short, CIDP. My CIDP came on gradually, with my symptoms starting in May 2008. I felt weird sensations and weakness in my legs, but I always blamed it on my dance lessons or from exercising. There were a few times my knees buckled or I collapsed, but shrugged it off. For the greater part of my life, I was sick with other chronic illnesses that went undiagnosed until I was 16–and up until that point, I thought everyone felt that way.
During that summer of 2008, things took a drastic turn for the worse. I couldn’t stand up straight due to severe weakness, and my legs felt so heavy that I could barely support my body weight. As my health deteriorated, soon I was walking with a walker. Then, literally dragging myself with a walker. I would crawl around the house, and would have to crawl up and down stairs in my house. The sensory and motor function in my legs gradually decreased as time went on, and I was finally using a wheelchair. In December, I learned one of the most horrifying things was to wake up to feeling nothing but the agonizing burning pain and tingling in my legs. I went to get out of bed, and my legs wouldn’t move with me, even though my brain was telling my legs to move. I broke down, slapping, punching, pinching my legs to get them to work… and there was nothing. Nothing. I relieved that moment in March 2021. Leading up to that, I was able to crawl around the house, because in my mind, I was keeping some movement and I was too proud to use my wheelchair all the time at home. But the insidious nature of CIDP continued. I began toppling over, and my sensory and motor function declined more and more. It’s a helpless feeling, because I couldn’t do anything about it due to issues with treatment, and I knew what could happen. I knew what I could be in store for—and it happened.
Part 2 of 2 cruel to live through this once, but to relive it a second time? To have made such progress and accomplished so much, just to have it ripped away? I miss everything that was ME. I miss doing everything that brought my soul joy. I miss doing all the things that made me feel like I had a purpose, that made me feel alive, and they are all things that require functioning legs. Everything I worked towards, was diminished and torn away from me. I keep trying to find myself through the rubble of destruction that is CIDP and chronic illness, and I feel as if I fall short when it comes to this time every year.
I’ve endured all the classic stages of grief, from denial, anger, bargaining, depression, acceptance— to repeat it when there is a trigger such as this. It’s no doubt I’ve been battling c-ptsd, due to the long, on-going exposure of illness and disability, medical trauma, and medical abuse and neglect. After becoming paralyzed again, there were many days where I laid on the floor, screaming. Blood-curdling screams of pain, disbelief that I am again facing this hell, and the exhaustion of the journey I have ahead of me. All of the time I will never get back eats away at my soul. I would cry and pray to God throughout the day and during the long nights of insomnia for it to go away and everything be better, only finally fall asleep and wake up to the same reality. I felt betrayed by God, so angry, to the point that I am truly ashamed. That feeling of wanting to run away from myself was ever-present.
But as we all know, there is no way we can run or hide from our problems. We can only face them head on, and fight with everything we have, no matter how little we feel that inner force to fight. We have to believe that there is a better future ahead of us. I am still alive, so that means I still have a purpose. I’m trying my best to hold on and fight for it. God isn’t finished with me yet, and though I’m heartbroken every May 7th since I lost the ability to walk again, I’m so grateful. Grief can be a beautiful conundrum like that, in a strange way. I’m learning things that only this experience could teach, I’m leaning more into my faith, and I’m trusting that whether I’m walking or rolling, God does indeed have a purpose for me. I won’t stop fighting until I reach my God-given purpose, no matter how physically and emotionally painful it is. In darkness, there is always the light of hope. It’s a dull glow at the end of the tunnel that guides us through our personal battles that becomes brighter and brighter. The same goes for anyone experiencing grief, c-ptsd, chronic illnesses, disability, etc—you are here for a reason and you still have a purpose, so don’t stop fighting for it, don’t stop hoping for it or yearning for a better tomorrow.
So today, I reflect. I reflect on the six years that God gave me to walk and live life on my terms. To accomplish things that I held close to my heart. Six years of walking, running, dancing. Six years of hugging my parents and sister standing up. Six years of running around with my dogs, being able to stand to see myself in a new pair of shoes or outfit. Six years where I was able to accomplish my longtime goals of becoming a medic and firefighter. Six years of proving to myself I can do so much, even when I was still sick and disabled. Six years of waking up to my ritual: feeling my legs and immediately moving them, just to make sure they’re still working. I am so eternally grateful for those six years, because God or fate didn’t have to give them back to me. And now, though I’m not walking, I’m still here. I’m alive, though my life is not how I imagined it to be or going according to my own plan. And if I’m still here, I’m still winning this fight.
The key in all of this is to not remain in this space for too long—honor your emotions and feel them, but don’t linger too long. You have so much of life’s beauty that is waiting for you. I hope and pray anyone that’s reading this, that is experiencing grief and adversity, knows that it’s okay. Just please promise me to swim when those waves come. Swim with me—we will swim together. I don’t have to know you personally, the reasons or the depths of your pain, but I am with you in the darkness of the storm.
I’m swimming extra hard today, but Happy 12 Years—regardless.
Hi, my name is Rivi. I'm here because
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