Brain On Fire and The Emotional Changes In MS

Brain On Fire and The Emotional Changes In MS

L's Story

Brain on fire


Have you ever had the feeling of going on an emotional roller coaster? Well, The term it self is explains my life in a nut shell a year ago. I had the most emotionally draining day and to look at me you would never have an idea of the storm brewing in my mind... See if you don't already know I have MS ( Multiple Sclerosis ) and constant physical changes that come along with MS are like being on a roller coaster all by it self but the emotional and mental toll it takes are one of the many things we tend to over look and not discuss as much as the visible changes that can occur. 


MS emotions


But besides the physical changes that can occur which sometimes can seem like suddenly and drastically throwing your life into complete disarray... The brain which is the control center for your entire body including all your senses, emotional feeling that can be experienced and all the other little things people standing on the outside looking in cannot see, goes on its own little trip... from it now processing information slower or inaccurately sometimes, like just walking down the street and all of the sudden the ground feels further away.... you can be totally fine one minute and then at the snap of a finger things change. That feeling alone can make you feel unsteady, unsafe outside, and alone in a world filled with people...why? because no one can see what your going through but you, no one understands whats happening but you, to everyone else you look completely crazy when you can't seem to walk in a straight line, look as if your reaching for the ground that is clearly there. 

I slowly started to loose feeling and have extreme fluctuations in the sensing that pertain to my feelings... like sitting on my bed and feeling that the back of my thigh was on fire, as if i was sitting on a bed of hot coals. How about standing in my kitchen cooking dinner and all of the sudden I feel like someone poured cold water down my legs..the feeling could almost make you think you urinated on your self until your brain realizes, wait... urine isn't cold and well there's nothing there no water nothing cold...then you start to tell your self girl your completely and totally tripping. You will be questioning your own sanity at this point.




Or what about hearing conversations or not hearing them that is.... Can you imagine working in a lab or an environment where you have to deal with people all day, communicate effectively, make judgement calls, and your job itself depends on the accuracy of your work but you start having problems that you can't explain, feeling like the people around you like co-worker and patients are whispering and laughing but in reality none of this is actually happening. But you have no idea that it's not happening because your perception of things has changed... PERCEPTION is everything and if it is distorted or effected in a negative way it can change everything, and I mean everything.


That's what MS ( multiple sclerosis ) does...make you question your sanity, and if left un-diagnosed other people will start to question your sanity also... These were the things I experienced before my diagnosis, and soon quickly developed into seizures. I had a seizure one day that scared the living shit out of me. I felt trapped in my own body, it felt like forever, felt like I could hear everything going on around me, felt as if I was responding to people speaking to me, but they heard nothing, it was all happening in my head. I did not know what to do or what it was but I new I was terrified and had an immense feeling of being alone, held hostage in my own mind. Luckily soon after I was diagnosised with MS and placed on treatment for the condition. I say treatment because MS has no cure, only treatment to slow the progression of the disease. Yes, it's a true but sad fact...with all the progress the medical community has had in other conditions and diseases MS is still one of the many conditions that have no cure. You constantly live in fear of the what if's. 




I have been on treatment now for 20 months to be exact and the fear is as strong as it was the day it all started. My seizures have stopped for now, I have my feeling back and my senses have normalized even though it has taken almost a year to do so and I still have new lesions in my brain and spinal cord every time I go in for a new MRI scan to check on the progression of my disease which is how doctors track MS. I am thankful everyday for my doctors at Johns Hopkins Multiple Sclerosis Center. They truly do every thing they can to get keep you from progressing with this disease even faster and have a wide array of research studies that fight everyday to find a cure for MS which I happily participate in. 



L's MS Update


I recently had another MRI scan to check my status and my progression. Unfortunately I have a new lesion, this time in the left frontal lobe of my brain. Having new lesions in this section of the brain can cause issues with your movement, decision making, reasoning, behavior, memory, mood, planning, inhibition, personality and much more. Personally I feel like I'm losing parts of my self sometimes...when I don't feel my best I tend to just be silent and stay to my self because of the fear of doing or saying something that won't come across right or be totally misunderstood from what I truly want to say. I have been experiencing extreme highs and lows when it comes to my emotions... and when I really feel scared I tend to push people away, the very people that help me, the very people I want to be around, the very people I love. This alone scares me and makes me feel like I'm broken. Makes me question who would ever stick around, love or be there for a person like me. I feel broken. I hope one day to find love, have a successful career and family but broken people break things, at least that's what my mind tells me. And I am constantly explaining, apologizing, or trying to make up for things that happen that could very well be because of my brokenness.  I like to spend my time around the things that fulfill me, help me stay positive, keep me smiling, and help keep my mind off of the future...sometime with a diagnosis like MS the future does not seem bright. But in doing so I hope daily that I am not hurting the people around me who constantly ask whats wrong when there concerned, who constantly wonder why I don't remember things they feel should be simple or important, who actively make an effort to be in my life considering...MS. Today felt like a bad day, today I was happy, sad, just emotional..., depressed, fatigued, and then lonely. If I had the perfect description for it I'd say I felt like My Brain Was On Fire but I will continue taking things one day at a time, treasure the relationships with the people that actually care, nurture, and help me feel and be my best daily, stay positive and most of all keep Sharing to Make Others Aware.. We must find a cure for MS.. Thanks for reading!!



Brain Fuctions

And If you would like to understand better what I mean when I say Brain On Fire... Check Out The Movie: Brain On Fire Now showing on Netflix & Terrarium

Written by Gerard Barrett
Based on Brain on Fire
by Susannah Cahalan


Multiple Sclerosis | What it feels like to explain




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