Post-Concussion Syndrome

I’m new here. I sustained a brain injury in 2017, then ruptured a disc in my back in 2021, and sustained another brain injury in March of 2023. I’m also now facing IIH and a potential POTS diagnosis. Glad to be part of this group.

#MightyTogether
#BrainInjury #IntracranialHypertension #PostconcussionSyndrome #PosturalOrthostaticTachycardiaSyndrome #DegenerativeDiscDisease #Migraine #Depression

My husband and I live in Maine, our parents live 4 hours away in CT. My husband was in an accident long ago which left him with post concussion syndrome. He did 20 years in the Air Force and retired so we live on his retirement and VA benefits. I have been his caregiver although he doesn't always see it that way, struggles with his mental health but doesn't realize he needs help. 3 years ago he had a psychotic episode that lasted months, has mostly recovered but still really needs someone around to keep him on track. After 27 years as a homeschooling stay at home mom, last year I earned my masters in Counseling, found an awesome part time job doing exactly what I had dreamed of doing, and I'm part of an amazing community here. Now my parents...we've noticed over the years that mom was becoming more and more forgetful. This past spring she was diagnosed with alzheimers. She still recognizes people but she cannot be on her own at all, can't do the simplest tasks without direction, although she insists she can and tells everyone she does do everything. My dad takes care of her 24/7. My brother lives there as well but is little help to them and often moreover burden. Mom is becoming very mean, especially to my dad. She calls him a liar, has threatened to hit him, gets angry when he directs her to do something. Dad is getting tired, and I'm learning now that it's always been kind of a challenging relationship. But dad's not going to leave her. They don't have money to go into assisted living, they're still paying on their home as they've had to refinance a couple of times because of stuff my brothers done. I'm afraid this is taking a huge toll on my dad. They had said last week that they were going to have people come in to help and mom could go to a day program. Today dad told me they canceled all that except the meals on wheels. When I asked why, he said "mom's not ready to go to the day program" which I think really means that mom put a kabosh on the whole thing. She may not have a memory but she can definitely still demand her own way and keeps insisting they're perfectly fine. Dad has so many things he'd like to do but can't because of mom. We thought about moving them up here with us, but their support is mostly down there. I don't really want to move down there because I've got my support system here, my husbands doctors are here, I'd have to change my counseling license to CT and wouldn't find this kind of job and i don't want to be sucked into the drama of my husband's family too (they don't believe in mental illness but whew! they should!). We try to visit at least once a month. Am I being selfish not moving down there? Oh and our kids are all here in Maine as is my grandbaby and my oldest son, I'm pretty certain, is on a crash course with his own mental health. I've already pretty much lost the mom I know, I'm so afraid I'm losing my dad too and I've also got so much other stuff going on too. I try to be brave for everybody, be strong, but I just don't know how. And secretly I wish someone would work so hard taking care of me. #Caregiving #AlzheimersDisease #MentalHealth

What are your thoughts on holistic medicine?

Aside from fibro I struggle with migraines, chronic fatigue, hypermobility, etc. I went to a chiropractic/brain wellness/nutritionist/gut health doctor yesterday for a consultation (not covered by insurance of course). She validated my pain and experiences (rare with most doctors). Maybe she can help like she claims but I am hesitant with no guarantee and paying out of pocket. Has anyone tried something like this before? Is there any hope for relief?

#Fibromyalgia #Migraine #ChronicFatigue #PostconcussionSyndrome #PTSD #ChronicPain #HypermobilitySyndrome #Anxiety

On November 8, 2015 when I was 14 years old, I sustained life changing injuries in the last minute of a soccer game. I dislocated 3 right ribs, my left sternoclavicular joint, and my left acromioclavicular joint. However, the worst of my injuries was a concussion. In a state of shock and with disrupted thoughts, I was left disoriented. I could not process or understand my detrimental injuries, so I continued with school and sports. Nine weeks later, I was diagnosed with a concussion, which soon developed into post concussion syndrome.

Post Concussion Syndrome (PCS) is classified as a mild Traumatic Brain Injury (mTBI). It is far from mild. I developed a vast amount of symptoms including, but not limited to: dizziness, insomnia, distorted vision, light sensitivity, noise sensitivity, touch sensitivity, information processing disorder, derealization, depersonalization, fatigue, short and long term memory issues, dysphasia, and celphagia. My symptoms caused my life and mind to unravel. My past, present, and future were in shambles. Unable to remember my past. Unable to live in and handle the present. And without a present, there is no future.

Celphalgia is head pain. I call it brainache. For five and a half years, it is always there. A haunting, debilitating pain that resides within my brain. Living with intense pain makes every breath a struggle to survive. I used to do five things: soccer, basketball, learning, reading, and spending time with my family. I wanted to be a geneticist. Now, I cannot do any of those things. I cannot be any of those things. I could not understand what I had lost. I still cannot. Your brain is everything, and mine is scrambled.

Who are you when your potential is stolen? When you cannot live your life? When you cannot remember your past or present? When you do not have enough words to think quietly and soundly to yourself? I certainly did not know. I did not even know the questions, much less the answers. I never understand the situation with words. However, I feel it with my emotions. Emotions are my only thought process, and they are a stranger to me. Words are crucial. They are how we understand the world and ourselves.

I was never an artistic person. The only art I did was the required courses in school. Despite this, in 2016 I undertook my first attempt to draw. I was unable to decipher my own life and emotions. I was brewing with feelings. Stirring with anguish. It was bubbling out with nowhere to go. No words to leave me. I took my pencil, put it to paper, and the Broken Girl was created. My art book, Broken Emotions, came to be because of this girl. She gave a voice to the agony, hopelessness, and hopefulness that I had no words for. I am still unable to understand what it all means, but through her, the turmoil inside me is now seen. It became known. My battles could be fought with her by my side. The pain I endured, she would understand. She is a reflection of whoever resonates with her emotions. She can be everyone, someone, or no one.

The Broken Girl is never completely whole. She is always missing part of her head and thoughts, although you cannot always tell. She hides it well, but she is broken. With her as my internal translator, I continue to fight to understand my thoughts, to survive the pain, to rebuild my life, and one day recover and heal my brain and body. I plan to steal back my potential and my brain. The Broken Girl is for those in pain — an expression of the shattered fragments of broken emotions.

About two weeks ago, I wanted to do a post a day, to get back into the feel of writing and processing and just dealing with this lovely process of living with a chronic illness.

Then, I had a bad Friday, and I long weekend, fatigue hit hard and then an appt , then another appt….

Then, just CRASH…

All the best intentions, gone.

Now, I’m slowly coming up for air and it’s like …. Wow, it’s been almost 2 weeks.

It’s so easy to lose time, and then when you’re ready to start again … you feel disappointed…

Starting over…
And over
And over

Sooo

Here we go

Starting over

#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression
#TraumaticBrainInjury #TBI
#PostconcussionSyndrome
#AnkylosingSpondylitis #ADHD
#ChronicPain #
#Endometriosis #PMDD
#COVID19 #ChronicFatigue
#DiabetesType2

I'm thrilled! That's all!

I worked hard to navigate college and then graduate school with various disabilities, and somehow.... I did it! I am continuing to write a novel and now looking for a new job as I finish my mental health IOP !

#writer #Disability #ChronicIllness #MentalHealth #ComplexPosttraumaticStressDisorder #ObsessiveCompulsiveDisorder #Autism #ADHD #Dyscalculia #TicDisorders #EatingDisorders #PolycysticOvarySyndrome #GenderDysphoria #Migraine #PostconcussionSyndrome #BipolarDisorder #BorderlinePersonalityDisorder #GeneralizedAnxietyDisorder #NonverbalLearningDisability #Trauma #DependentPersonalityDisorder #Recovery

I think I’m doing pretty good for the one post a day. I have almost made it a week. 😂✍️

This is progress.

I have a bunch of appts today, so I am preparing to be poked and prodded and make “nice conversation” 😂😂

It’s not the best day though, fatigue is high and I would really rather be in bed, because every moment will be a tiny mountain I have to climb.

Dealing with one chronic illness is frustrating enough, but when they start to combine on any given day, that’s when your body becomes your own personal torture chamber.

Today, it’s joint pain plus the PMDD and the spine pain… and with the PMDD there is the endometriosis… and there is always the foundation of it all , the Asthma…

You have to take it all in, balance it and then try to present yourself to the world as

“Normal”

Life , right..🤔😂

I look forward to the adventure of today. 🥰

##Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI
#PostconcussionSyndrome
#AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2

“What do you do all day?”

I’m a little late but I’m holding strong with my post a day …

Fatigue is definitely hitting hard today… I’m still hoping to be a little productive…

An old friend asked me that question, and I answered her once, I told her it depends on the day.

But, then she was like but I’m just wondering how do you spend your days….

That question has been haunting me like the ghost of a life gone past…

Because as a severe asthmatic just coming out of two months of dealing with the side effects of having CoVid….

“Nothing”

is really , surviving… struggling to hold on to the little bit of breath and life that you have…

Laying in bed and distracting yourself from the pain and the struggle of breathing and pain…. Is fighting for your life….

“Be still”

is really being a warrior, holding on to all the Hope you have left and get your “One more day”

“Nothing”

… when so many things are broken inside of you that taking a full shower without struggling to breathe or stand up straight is cause for celebration..

But,

When you’re used to multitasking, and being in charged of a business or people and getting things done… When you’re use to creating things that did not exist before your mind said, “Let there be, and it was…”

“Nothing”

Does not feel like an acceptable answer…

It is a text message still left on “Read”, the tiny bubbles keep showing up and disappearing…

I’m still looking for the right answer to that question… ✍️✍️

#Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI #PostconcussionSyndrome #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2