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Hi everyone :) first post, looking for some direction :) I’ve always known that the way I am , was always a little different from the norm, but aside from meltdowns that first appeared during my early teens I was able to “keep it together” for the most part. After essentially being mostly bed ridden for 10 years (my epilepsy was out of control) in my studio, in a very low stimulus environment, I’ve finally been living again the past 9 months. However, whenever I’m thrust into normal life, I get overwhelmed/overstimulated by certain sounds , smells and crowds, need to rush home (I found that putting on noise cancelling headphones helps a lot before I’m to reach my place) and need to rest for a couple of days as I’m absolutely exhausted/drained and my angst, frustration, sadness, anxiety are turned up to a 100. (Meltdowns are common for me the following days if someone talks to me for too long) I suspect that all of this is due to the stroke I suffered as an infant and due to the brain damage I suffered from my seizures due to my epilepsy, which all hit the emotional centres of my brain). However, I have no idea what specialists to contact to see if they can help me further to help me with a diagnosis and also a specialist that can help me to cope with certain behaviours I have due to what I have (like mitigating those I mentioned above). I’ve been doing CBT over the past 6 years for depression and ocd but the therapist is not specialised in neurodivergence. My neurologist is solely focused on the medical aspect of things, that’s it. What do you recommend I should do first? Who should I contact? It’s really overwhelming. Thanks so much in advance :) #Depression #Neurodiversity #MentalHealth #OCD #Epilepsy #Stroke #BrainInjury

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Crystallization that I’m neurodivergent. What next?

Hi everyone :) first post, looking for some direction :) I’ve always known that the way I am , was always a little different from the norm, but aside from meltdowns that first appeared during my early teens I was able to “keep it together” for the most part. After essentially being mostly bed ridden for 10 years (my epilepsy was out of control) in my studio, in a very low stimulus environment, I’ve finally been living again the past 9 months. However, whenever I’m thrust into normal life, I get overwhelmed/overstimulated by certain sounds , smells and crowds, need to rush home (I found that putting on noise cancelling headphones helps a lot before I’m to reach my place) and need to rest for a couple of days as I’m absolutely exhausted/drained and my angst, frustration, sadness, anxiety are turned up to a 100. (Meltdowns are common for me the following days if someone talks to me for too long) I suspect that all of this is due to the stroke I suffered as an infant and due to the brain damage I suffered from my seizures due to my epilepsy, which all hit the emotional centres of my brain). However, I have no idea what specialists to contact to see if they can help me further to help me with a diagnosis and also a specialist that can help me to cope with certain behaviours I have due to what I have (like mitigating those I mentioned above). I’ve been doing CBT over the past 6 years but the therapist is not specialised in neurodivergence. My neurologist is solely focused on the medical aspect of things, that’s it. What do you recommend I should do first? Who should I contact? It’s really overwhelming. Thanks so much in advance :)

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I’ve been doing well for so long but….

Now I’m 60 after a stroke at 51 and being left with chronic pain, I think I’m just exhausted. I’m tired of being bullied. I’m tired of working on my marriage. I’m now retired on Social security disability and tired of pain and day to day life. I see no joy in it. My family is not loving. I feel used and unloved. Everyone takes and no one gives back. I’m spent. Why won’t God just take me now. I have no friends left. And I don’t care. Sooo tired yet no rest.

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Why I Decided to Share My Story Online After My Stroke

When I had a stroke, my life changed overnight. I lost my independence, my strength, and, unexpectedly, many of my friends. The people I thought would be there for me slowly disappeared. Some didn’t know how to handle my condition, others got busy with their own lives, and a few just faded away without explanation.

At first, the isolation was unbearable. I was dealing with paralysis on my right side, struggling with everyday tasks, and trying to process the reality of my new life. But what hit me the hardest was the loneliness. The silence. The absence of those I once leaned on.

## Turning to the Internet for Connection

In my lowest moments, I found myself scrolling endlessly through my phone, looking for something—anything—that would make me feel less alone. That’s when I realized that the Internet could be more than just a distraction. It could be my bridge to the world.

I started reading about others who had gone through similar experiences. I found people sharing their journeys through stroke recovery, their struggles with aphasia, and their battles to regain mobility. Seeing them push through their challenges gave me hope. If they could do it, so could I.

That’s when I made the decision: I would start sharing my own story.

## Why I Chose to Post About My Life

1. **To Combat Loneliness** – I had lost many of my friends, but I didn’t have to be alone. By sharing my experiences online, I found a new community—people who understood my struggles and supported me even from a distance.

2. **To Raise Awareness** – Before my stroke, I didn’t know much about stroke recovery, aphasia, or the mental toll it takes. By sharing my journey, I hoped to help others understand what survivors go through and maybe even educate those who still had their health.

3. **To Help Others Like Me** – When I was searching for guidance, the personal stories I found online helped me more than medical articles ever could. I wanted to do the same for someone else—be a source of encouragement for others who felt lost after a stroke.

4. **To Keep My Mental Health in Check** – Writing and sharing became my therapy. It gave me a sense of purpose, a way to express my emotions, and something to look forward to. Instead of dwelling on what I had lost, I focused on what I could build.

## Finding a New Kind of Friendship

The Internet became my friend in ways I never expected. Through my posts, I connected with stroke survivors, caregivers, and even complete strangers who just wanted to offer kind words. I built relationships with people across the world—people who checked in on me, shared their own experiences, and reminded me that I wasn’t alone.

It’s not the same as having friends physically around, but it’s something. And sometimes, that “something” is enough to keep you going.

## Moving Forward

I still miss the friends I lost, but I’ve also gained something new—a sense of community that stretches beyond physical boundaries. If you’re feeling isolated, if life has knocked you down and you feel like no one understands, I encourage you to reach out. Share your story. Someone out there needs to hear it.

I know I did. And I’m grateful that I found voices like mine when I needed them most.

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I’m new here!

Hi, my name is wjudd429. I was misdiagnosed with a disease I didn’t have. I was on high dose steroids and chemo. I lost everything; from hair and bone loss to friends and family. I’m trying to put my life back together and it’s been an emotionally exhausting process and some days I fear things won’t improve. I’m afraid of the healthcare system and and wonder if something else was missed. I had a stroke that was missed while on this treatment. Between all the medications and stroke I deal with memory and processing issues now. sometimes I just don’t know where to start.

#MightyTogether #PTSD #ADHD #Grief

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My story (part 1)

❤️ **The Boy on the Shelf: A Story of Survival, Resilience, and Hope** ❤️

I was born in the spring and grew up in a small town. My first 11 years were filled with happiness, stability, and love—a foundation that many children rely on to grow and thrive. I have no bad memories from that time, only warmth and joy. My childhood was a safe haven, a time when life felt simple and full of promise. Family holidays with my parents and grandparents were a highlight, and I remember those trips with fondness, a reminder of a time when everything felt right in the world.

One of my happiest memories from that time was during a winter when my dad told me I was going to have a sister. I remember bouncing on my bed with excitement, over the moon at the thought of becoming an older sibling. When she was born, it felt like our family was complete. I loved watching her grow and being part of her early years. Those moments were precious, a snapshot of a time when life felt full of love and possibility.

One of my earliest and happiest memories of bonding with my dad was during a major football tournament. We’d stay up late together to watch the games, sharing in the excitement and camaraderie that football brought. Those moments were special, a reminder of the connection we had before everything changed. But it wasn’t just football that brought us together. I also remember watching Mike Tyson fights with him, sitting on the edge of the couch, wide-eyed as Tyson dominated the ring. My dad would tell me stories about legendary boxers like Muhammad Ali, weaving tales of their strength, resilience, and heart. He made those fighters come alive for me, and I hung on every word.

My dad was my hero back then. I loved going to work with him in his lorry, feeling like I was part of his world. The rumble of the engine, the open road, and the sense of adventure made me feel like I was on top of the world. He’d let me sit in the passenger seat, and I’d imagine I was his co-pilot, helping him navigate the highways and byways. Those moments were golden, a time when I felt truly connected to him, when I believed he was the strongest, bravest man in the world.

But everything shifted when I was 11. My father had a stroke, and life as I knew it turned upside down. The man I once looked up to—the one who shared late-night football matches with me, who told me stories about Ali and Tyson, who let me ride shotgun in his lorry—became someone entirely different. His illness left him abusive, distant, and eventually absent. The stability of my childhood was shattered, and the family dynamic I had known was forever altered. By the time another major football tournament came around, I was only 13, but I had already experienced more pain and upheaval than many people face in a lifetime. That year, my father moved away, and my fear of abandonment took root. The man I had once relied on was no longer there, and the void he left behind was immense.

It was around this time, at age 12, that the traits of Borderline Personality Disorder began to develop. BPD often stems from prolonged trauma, especially during childhood, and my experiences left me with a deep sense of emptiness and instability. The fear of abandonment became a constant companion, shaping my relationships and leaving me terrified of being left behind. This fear followed me into adulthood, manifesting in relationships where I constantly worried about being abandoned, even when there was no real threat. My relationships became unstable, marked by intense emotions and a desperate need to hold onto people, even if those connections were unhealthy or damaging.

My sense of self felt fragmented, like I was constantly trying to piece together an identity that had been shattered. I struggled to understand who I was, and my self-image shifted depending on the situation or the people around me. This lack of a stable identity left me feeling lost, as if I were drifting without an anchor. To cope with the overwhelming emotions, I turned to impulsive behaviours—drugs, binge drinking, and other risky actions that offered a temporary escape from the pain. These behaviours were a way to numb the emptiness, but they only deepened the void inside.

Self-harm became another way to cope. I would smash my face with objects to make it look like I’d been beaten up, and I cut my arms and legs. These acts were a physical release for the emotional turmoil I carried, a way to make the invisible pain visible. My emotions often felt like a rollercoaster, swinging from intense anger to deep sadness in a matter of moments. These extreme emotional swings were exhausting, leaving me feeling out of control and disconnected from myself.

The chronic feelings of emptiness were perhaps the hardest to bear. No matter what I did, I always felt a void inside, a reminder of the love and stability I had lost. This emptiness was a constant companion, a shadow that followed me wherever I went. At times, my pain and frustration erupted as explosive anger, sometimes directed at others but often turned inward. This anger was a reflection of the helplessness I felt, a way to release the pressure that built up inside.

There were also moments when I felt disconnected from reality, as if the world around me wasn’t real. This sense of disconnection made it hard to trust others or feel grounded, leaving me feeling suspicious and alone. These traits of BPD—fear of abandonment, unstable relationships, shifting self-image, impulsive behaviours, self-harm, extreme emotional swings, chronic emptiness, explosive anger, and feelings of disconnection—shaped my life in ways I couldn’t yet understand.

By the time I was 14, my mother’s new partner had moved in, bringing with him a constant undercurrent of fear. I was terrified of him, so much so that I would hide on a shelf, curled up with a book, trying to escape the tension and danger that filled the house. It was a small, fragile refuge, but it couldn’t last forever. I had hoped he might become a father figure, someone to fill the void left by my dad, but he had no real interest in me. Instead, he was as abusive as the rest, and the safety I longed for was nowhere to be found.

Eventually, I thought, *sod this*, and left the family home. Outside, I sought connection and safety, but instead, I found myself mixing with older teens and men in their early 20s. These were people who should have known better, but they took advantage of my vulnerability. There were two separate incidents of sexual abuse during this time. One, I describe as consensual, though looking back, I can see how blurred the lines were, given my age and the power dynamics at play. The other incident is harder to recall—I’ve blocked out much of what happened, but I remember running away afterward, my body and mind screaming at me to escape. These experiences left deep scars, even if some of the details remain hidden.

My teenage years were marked by chaos and pain. I would smash my face with objects to make it look like I’d been beaten up, perhaps as a cry for attention or a way to make my internal pain visible. I also cut my arms and legs, a physical release for the emotional turmoil I carried. These actions weren’t just about the physical pain; they were a desperate attempt to feel something, anything, other than the weight of what I was enduring.

During this time, I also became my mother’s “right-hand man,” stepping into a role that no child should have to take on. My mother was trying to protect both me and my sister, but she was navigating her own trauma and doing the best she could with what she knew at the time. I don’t think she was a bad person—just very naive, perhaps overwhelmed by the circumstances. It’s clear that I love her deeply, even though I’ve carried the weight of blaming her for not being able to shield me from the pain. My compassion for her shines through, even as I acknowledge the impact her choices had on my life.

TBC

(edited)
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Dearest C

I survived a few days of work. I've had the test results and nothing too bad there although I definitely have the condition. I'm on a new medication to help it. I'll just add that to the cocktail haha.

I only wish I could get your replies, thoughts, advice and prayers.

I'll always love and miss you. I never contemplated anything but a long life for us all.

#Grief #Sadness #Loss #Stroke

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Story of the Week: What hacks do you use to make cooking easier?

Managing daily tasks like cooking, cleaning, organizing, or running errands while dealing with a health condition and limited energy can be challenging and overwhelming. Finding ways to check things off your to-do list more efficiently can save time and help conserve energy, too.

What helps make cooking easier for you?

📚Need some inspiration? Read our Story of the Week here!
8 Cooking Hacks For When Illness Makes Cooking Seem Too Overwhelming

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction
#PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis
#Cancer #Anxiety #PTSD
#CheckInWithMe

8 Cooking Hacks For When Illness Makes Cooking Seem Too Overwhelming

"Some of these tricks and tips can really come in handy."
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Psychosomatic anxiety

Does anyone struggle with Psychosomatic anxiety? Psychosomatic anxiety (by my definition) is when your mental stress makes your anxiety worse and then you catastrophize and have crazy unrealistic thoughts: like that you’re having a heart attack, will have a stroke, etc. even though they never happen.

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