Hi, my name is Scotchandy51. I'm here because
Can my son (18) reapply into the royal navy having been diagnosed with childhood absent epilepsy ,aged 9although was cleared in 2018 of being seizure free and medication free(7yrs ago ) ?#MightyTogether
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I don’t know about you dear reader, but I’m always looking for answers, trying to delve deeper into my mind, understand myself more and unlock the mystery that I sometimes am to myself and to those that love me. Sometimes it’s a really tiring and painful journey for everyone involved and sometimes it feels like I have spent months down in the depths mining for answers and only come up with gold dust if that.
When I first started this journey, in earnest that is, because let’s be honest we’ve all half assed it before, this stuff is not easy and it’s full of unimaginable pain, my mind was pretty closed. First, I has been conditioned that medication meant you were weak. I fought that battle for a year with extreme health anxiety before completely abandoning ship on that notion and I’m so thankful I did. That said, I am a firm supporter of genetic testing for medication interactions. I unfortunately was prescribed a medication that had a significant interaction with my genetics and it had dire consequences on the trajectory of my life. Found out a little too late that I should have never been prescribed that medication. Genesite testing, ask your provider if you have never heard of it. As far as I am aware it’s only available in the US at the moment. It’s not a silver bullet. it will tell you what medication’s will metabolize correctly with your genetics, but it won’t tell you the dosage. Still, that gets you a long way from the “here let’s try this for a month or two and see how you do” method of psychopharmacology.
I’m constantly looking at research, new apps, new modalities of therapy, books, anything and everything that could provide any help. I have even gone so far as to dialogue with the head of a few psychedelic research studies (usually asking why someone with my diagnosis is excluded when there is plenty of anecdotal evidence to the efficacy of the treatment.) Yeah so my mind is wide open at this point and so I present to you Luminate.
First, let me be clear, I use the app, I don’t get paid to use it. So this isn’t a paid endorsement which I know is against community guidelines. This is my experience with the app and it’s been pretty wild. I wouldn’t write about it if it wasn’t.
A little backstory: In 2021 while researching mental health news I found this article:
I Tried the App That ‘Makes You Trip’ – and It Was Surprisingly Good
The basic premise, which’s is fully researched based is simple. The torch on your phone is used to create a strobe effect that when coupled with their music and guided or unguided mediation creates the same brainwave patterns that get generated when you trip. You simply pick a meditation, set an intention , put on some headphones, go into a completely dark room, turn the torch toward your face, and close your eyes, and start the session.
Now, I have never tripped mind you, yet that is, so I can’t actually speak to the actual experience and compare it, what I can speak to is what I’ve experienced from a healing perspective.
Obviously there is a medical disclaimer which I should mention, this app shouldn’t be used by anyone who has epilepsy or suffers from photostrobic induced seizures.
Honestly, I don’t remember much about my experience in 2021. I was at a different place mentally then and I think that made all difference, that and I hadn’t yet tried cannabis, another stigma I left in the dust.
So here at rock bottom, with really nothing left to lose, I rediscovered the app and decided I’m going all in and I’m getting as high as I can before I do because I’m gonna get some answers. I have to.
What happened next is somewhat indescribable. After each journey that app gives you a chance to process in a journal. The first trip was so powerful and emotional that I couldn’t even write anything down. I think the only thing in that general entry was “wow that was intense.”
That was about three days ago. I have done many journeys in the last three days. I did a journey on loving kindness and realized how many people God put in my life along the way, who actually saved me from myself who I didn’t appreciate, who I discarded because of my mental health issues and who now today I completely appreciate. I realized my ex who went through hell with me is one of the most loving and kind people on this planet, and that she’s never given up on me and I didn’t appreciate her.
I did another journey on contentment and realized that I have believed the lie that my life has been full of discontent. There have actually been many moments of contentment and I see them now and appreciate them.
Last night I did a journey on negative thoughts. This was the most powerful one yet. I had to pick a negative thought to focus on. My negative thought was “I am a failure”, this thought was drilled into me by my perfectionist father, it has shaped my life more than anything else and created so much damage. What I ended with was this:
I have far exceeded both of my parents. My father died the same miserable man he was, full of regret and my mother who is on the threshold of this life at 82 is so unhappy she tried to kill herself twice last year. I am anything but a failure. My father wanted me to be perfect, and because I wasn’t I far surpassed him and all his unreasonable expectations. I am self-aware. I understand my illness fully now and that my friends is success.
I can’t say this this app will do for you what it’s doing for me. All I can say is that I have never stood in THIS place before and this app helped me get here and it feels great.
Incidentally I did go someplace in my mind, in case your wondering. I went back to the first moment I was told in so many words I was a failure. I was in my parents bedroom, watching my mother and myself as she showed me my sisters report cards and asked me why I couldn’t get grades like her. I was 6. In that space I was able to talk to my younger self. I told him, just be you and don’t listen to them, they don’t know what their talking about because they are broken, sad people, who can only feel better by making other people feel sadder than they do. You aren’t a failure. I’m proof of that.
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We are all apart of history each & everyone of us, just your existence alone contributes to our history!
Black Disabled History too
Our strength is Black History
Our resilience is Black History
Our beauty is Black History
Our influence is Black History
Black Disabled history matters because disabled people contributed so much to our history 👌🏽
Thomas Wiggins, Autistic & Blind Musical & Piano Virtuoso
Harriet Tubman, Legendary Poet and Icon for Civil Rights had epilepsy
Malcolm X, Civil Rights Leader & Fearless Voice of Black Nationalism was dyslexic
Fannie Lou Hamer, leader in the Civil Rights Movement and the vice-chair of the Freedom Democratic Party had Polio
Happy Black History Month 🖤✊🏽#Disability #Autism
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My family members don't get me at all. To them I'm a burden and a dog. My epilepsy has changed me and they don't see that
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So I've never been diagnosed but also never talked to anybody about it because nobody takes me seriously. I've been having for years sort of episodes where I spasm and shake violently, I often zone out, clench my teeth and even drool sometime. I know my cousin does epilepsy but I'm scared to see my doctor since he often blame everything to my weight.
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Hi, my name is Diane. I am here to learn about hypothyroidism, epilepsy, major depressive disorder and other medical/mental conditions.
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Something illness related I had to learn this year was to swallow my pride and use mobility aids .
I use to RELISH in the fact my illness was invisible.
I flat out lied about it to friends and family for YEARS and when the news of my illness was ( for lack of a better word ) “leaked . I had immense pride when people thought I was “ faking it “
But as I’ve gotten sicker .
It’s gotten impossible to hide .
For 4 years I’ve had to use supplimental oxygen.
Since Oct when I’m out and about I’ve been reliant on a walker .
And it’s so , emotionally difficult.
It got to the point where I realized I walked looking down . I didn’t check out the cute guy , because “ who the heck would be checking out the girl
Who looks like she is dying “
And then when you add the pity stares , and the completely Inappropriate comments
( like can we make it a rule of thumb to not ask strangers their life expectancy , or tell them how to fix their health )
Sometimes I’ve just wanted to crawl in a hole .
But when I realized the walker was going to be a longer term thing than expected. I made a goal to keep my head high every time I walk it with it ,
When kid give me questioning looks , I wave hi to them and give them the biggest smile I can.
And when I get comments from others talking about themselves with their kid / friend / spouse with oxygen or mobility aids .
And or comments online about how seeing me out and about helped someone feel confident leaving their house with their oxygen or walker .
It means everything. .
I’ll admit it , I’m vain .
I love hair , I love fashion I love makeup . ( I actually really enjoy getting ready )
I love that I’m 6”1 with giant lips and big green cat eyes .
And I a lot of days I deeply struggle with what illness has done to my appearance
But I’m so grateful that illness has taught me that I’m so much more than what’s on the outside ❤️
Through this year of ups and downs , what’s something rare disease / chronic illness has taught you ? #RareDisease #CVID #Epilepsy #MCAS #AutoimmuneDisease #Spoonie .
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Lost all balance at store, hit my whole left body an head. Idk why it made me feel responsible when she said 1 of these days I'ma give her a heart attack. I told her to the one to deal with epilepsy. Idk why I really feel like a burden to my mom because I suffer from it. I get really sad Everytime I have to take my med. Alot of people in my life have left over it because they don't want to be a supportive friend an be there when I needed friends the most. Weekly I think about it be nice to be dead instead of dealing with this any longer. I don't wanna live with this forever!!!
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Hihi! I have active epilepsy and several other undiagnosed mental and physical issues. I write stories and make zines, a lot of which being about my various ailments and maladies. I’m here for some solidarity and to retain the little sanity I have left!
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Simply remember or find/Google/ask Alexa or Siri……a line or part of a line from a song or a song title that was written for Empowering all of us.
You are welcome to add in even just one. This is easy because it is not even your words that you are adding in or articulating. The words have been given to us.
For example: I often think of this part of line from a song: “I am going to dance on broken glass.”
And this part song title, part of a line of the lyrics:
“Better Days are coming, if no one told you.”
And this longer one section of another great song:
“DON'T YOU TELL ME WHAT YOU THINK THAT I COULD BE;
I'M THE ONE AT THE SAIL
I'M THE MASTER OF MY SEA.”
And this small section of a song that I hold close to my heart:
“Just remember who you are; how you were never one for folding; how you never liked the corner; how the dark don’t even know you.”
Let’s Go Big on this one.
Let’s make this a holiday gift you can give for free that could be exactly what Many others need Right Now.
This ties in with the image I chose for this because we are going to be taking inspiration from Christopher Reeve aka Superman in the 1978 film who famously said "A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles".
So, I say YOU are a hero.
One of our Mighty family with a boatload of reasons to question this quote and anything, just a couple days ago, found, and in a way, smartly challenged my about 4 months old post with Christopher Reeve’s other famous quote “Once you choose hope, anything is possible.”
So, if you know anything about me, you know I accepted this challenge to help her and to help even more of us.
So I went to work for all of us— researching and drafting an impactful reply (and I can at times put hours into this work for all of us.)
Because YOU are worth fighting for.
So, I researched how he could say these profoundly optimistic and empowering statements when he, Christopher Reeve, a former role model to the world as Superman, was paralyzed from the neck down after a horse riding accident at age 42. His mother wanted doctors to remove his life support, because she thought that he wouldn’t want to live like this, but he fought back.
So the meaning to his quote about HOPE is: Hope, in this sense, is a decision. It is the most important decision we can make.
This choice of Hope also is not just wishful thinking, it has to be rooted in a Believing, it must be in the form of Optimism, and it must be held together by handing it over to a trust in ourselves, a trust in the universe having our back, to any form of spirituality that does not even need to be religion based faith.
Absolutely Right Now, All of Our Mighty Family Needs help with feeling Empowered to be Hopeful and Optimistic And YOU can be a hero and participate in this mission that is greater than all of us, greater than our own social anxieties, greater than our own fears and doubts, greater than our fatigue…
Whenever you see this post, especially through the rest of the entire holidays —All of them coming up for all denominations and through and past New Years…add in a line or part of a line from a song, or a song title, that was written for Empowering all of us. That was written to speak to all of us. To Connect All of Us.
GAME ON.
GAME FACE.
YOUR friend in this hard thing called life,
Dawn
#Depression #Anxiety #GeneralizedAnxietyDisorder #MajorDepressiveDisorder #PersistentDepressiveDisorder #MoodDisorders #Selfharm #Selfcare #Grief #ChildLoss #BipolarDisorder #Suicide #SuicidalThoughts #SuicidalIdeation #SuicideAttemptSurvivors #BorderlinePersonalityDisorder #ComplexPosttraumaticStressDisorder #ChronicPain #ComplexRegionalPainSyndrome #Fibromyalgia #MyalgicEncephalomyelitis #ChronicFatigue #ChronicFatigueSyndrome #PTSD #Trauma #PostTraumaticStressDisorder #AlopeciaAreata #AutoimmuneThyroidDisease #CrohnsDisease #AdrenalInsufficiency #AutonomicDysfunction #Cancers #LymeDisease #Migraine #ParkinsonsDisease #MultipleSclerosis #RareDisease #ADHD #BipolarDepression #AnorexiaNervosa #EatingDisorders #PosturalOrthostaticTachycardiaSyndrome #POTS #AutismSpectrumDisorder #AspergersSyndrome #Addiction #CerebralPalsy #RheumatoidArthritis #Arthritis #Disability #AddisonsDisease #ChronicIllness #CysticFibrosis #DownSyndrome #Epilepsy #MyCondition #musictherapy #Music #Songs #MightyMusic #IfYouFeelHopeless #WarmWishes #Agoraphobia #SocialAnxiety
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