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How do you hold yourself accountable?

Accountability means carrying out the tasks and goals you’ve set for yourself, which can be challenging! How do you hold yourself accountable? Do you have any tips for others who may be struggling with accountability?

(And if you need a reminder: Accountability is not something you learn (or perfect) overnight.)

#CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #ADHD #Autism #Cancer #Parenting #Trauma #MightyMinute

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Challenge of The Day

Can you put a bit of extra attention into remembering one of these today? It could be one that is easy for you, or one that is hard. Which one will you practice and why?

Finally, I'm so grateful for all of you and would love to get to know you all better outside of The Mighty, so if you're on Instagram, feel free to reach out at:

www.instagram.com/thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

#MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether #SchizophreniaSpectrumPsychoticDisorders

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What’s a “red flag” in health care? 🚩

You’ve probably seen “red flags” discussed most often when describing romantic partners or employment prospects, but they can exist in health care, too. A “red flag” is an action, behavior, or conversation that serves as a warning for something more harmful – and it can be incredibly challenging to recognize red flags, which is why we want to talk about them today.

If you’ve experienced a “red flag” in health care and feel comfortable sharing it, share your experiences in the comments below. What do you do when you encounter it?

#CheckInWithMe #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #Disability #RareDisease #Autism #PTSD #Spoonie #Cancer #EatingDisorders

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Painful experiences can be your guide for transcendence

The most painful experiences in my life have easily been the most educational. States of misery have taught me so much about life, things that aren't good for me, and what I am capable of, and for that, I am grateful.

Have you learned any life lessons from your pain that you are grateful for and can share?

Finally, I'm so grateful for all of you and would love to get to know you all better outside of The Mighty, so if you're on Instagram, feel free to reach out at:

www.instagram.com/thomas_of_copenhagen

~ Thanks to all. Thanks for all. ~

Speaking of thanks for all, I was hoping we could acknowledge everyone who comments below. I know it seems like a small gesture, but many people here have never opened up to anyone before and being open and honest with strangers can be quite scary. So, if we could show our gratitude by giving their comment a simple reply or heart, I’m sure they would really appreciate your team support. What do you say?

#MentalHealth #Depression #Anxiety #BipolarDisorder #BorderlinePersonalityDisorder #Addiction #dissociativedisorders #ObsessiveCompulsiveDisorder #ADHD #Fibromyalgia #EhlersDanlosSyndrome #PTSD #Cancer #RareDisease #Disability #Autism #Diabetes #EatingDisorders #ChronicIllness #ChronicPain #RheumatoidArthritis #Suicide #MightyTogether #SchizophreniaSpectrumPsychoticDisorders

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Relationshipo

Been with my now wife nearly 4 years. Been married 12 months. My wife was diagnosed with cancer last year, sort of had the all clear for now. She is in cancer counselling atm. She’s fought through and has been so strong through it.

I’ve been diagnosed with Mh since about 2005, on meds since then. Never been able to control it. I can feel it coining and I can feel myself dropping into the abyss which I cannot control. Nearly sectioned in 2016, many times close to suicide. Psychiatrist put it down to my toxic ex of 25 years, her alcohol, drug use, attacked and beatings with knives, hammers everything. I left early 2020 and am now with my wife.

we’ve known each other for 15 years as family friends and both have had similar toxic relationships.

just lately my Mh has been really bad, my wife is more distant since going to her counsellor.

apparently she finds our relationship suffocating? As discussed with her counsellor and before she can love anyone she needs to love herself?

slightly confusing to me as yes I tell her that I love her each day, I will txt I love her but not over the top.

buy her flowers each week, so things for her as a husband should and I am struggling with this comment which is causing my anxiety to get out of hand.

now I try not to txt at all, do not hold her hand as we used to do, she would always grab my hand, now that doesn’t happen.

still buy flowers though, can’t really talk to her about it as it would make me look insecure.

i alwYs see her as too good for me, she’s attractive, way above my level.

not sure as this is now causing issues more with me because I can’t help thinking it’s changed and only a matter of time before it all falls jn

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Cancer Fighting Songs

Hi I had throat cancer and got discharged after 5 years, I am now in 3 years remission from pancreatic cancer. I fought against the illness through writing two songs about fighting Cancer. Please feel free to share them if you like, find them on YouTube under the heading of Cancer Rebel Live www.youtube.com/watch and Cancer Rebel Live, Cancer Survivor www.youtube.com/watch

Stay safe and well Maurice aka MoMac

Cancer Rebel Live to YMCA tune by the inspirational Momac McCarthy MoMac YouTube 360p

The latest incarnation of my Cancer Rebel Live song with lyricsthank,s to everyone who came to the Hilton Hotel in Brighton November 2019 for making another ...
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Moving From Denial to Acceptance Through the Stories We Tell

Part 1 of 3 It’s been one year.

I have post-concussion syndrome, otherwise known as a traumatic brain injury. According to a specialist I recently saw, 80% of people with concussions recover within the first 3 months. Another 15% within the first year. The remaining 5% may take years to fully recover, or they may never regain everything that was lost. That’s me. The 5%.

I have resisted acknowledging this as my story. The reality of my experience has pulled at me, demanding to be seen and spoken, and yet I kept turning away. This is not me. This is not who I am. This is not my life.

But it is my life. The story is part of me. As I make my way from the false security of denial to allowing my story to take its true shape and form, acceptance builds within me, opening the possibility to live and thrive in this new landscape.

Sept 14, 2022 was an absolutely beautiful day. One of those fall days injected with the taste and feel of summer. Working from home, and with a wonderfully extra long lunch break, I called to my dog that we were going for a walk in the woods. We bounded out of the house, down the deck and off to the trail. At 10 years old, my dear friend was still up for adventures, and his years seemed to melt away as he joyfully pushed through the undergrowth ahead of me. I laughed as I took off after him, running through the woods.

Moments later I rounded a curve I’ve walked hundreds of times. And everything changed. My right toe caught on what I assume was a tree root. It happened so fast, I didn’t even feel myself falling much less have time to slow the descent. My face crashed into a mossy root. My glasses spun off and landed a few feet away. Pain erupted across my brow, nose, and cheekbone. As moments passed, that initial pain ebbed, I found my glasses, assessed I was in one piece, and ok. My sweet friend waited a few feet away, remarkably unperturbed by his human sprawled out on the ground.

It took about 10 minutes for a different type of pain to set in. I suddenly became very aware of my brain. It was as though I could feel its contours within my skull. I could feel it bouncing and scraping against the sides of my skull with every step. I was not ok and I needed to get home. By the time my feet hit the deck attached to the house, my vision was no longer clear, nausea was billowing up, and the roaring in my head that would be my constant companion ever since had begun.

The ER nurse brought a cold compress for my head – oh my god, that felt so good – I just wanted to sit with it forever. A CT scan revealed no visible damage. The doctor explained that with my particular fall, my brain had likely slammed into the front of my skull with the initial impact, and then as my head recoiled backwards, my brain likewise crashed into the back of my skull. Each impact, and the wild motions in between, causing damage to the precious cells that make up my brain. He prescribed anti-nausea medication, recommended ibuprofen and acetaminophen for pain, told me to take it easy and symptoms should resolve in 7-14 days. I’d be fine.

Those 7-14 days were like nothing I’ve ever experienced before. I existed only in my head, so intense were the sensations swirling within my skull. I could sit and be with the pain, roaring, and pressure, or I could drop heavily into sleep as though gravity was pulling me to center of the earth, trapping me with with fatigue.

I counted off the promised 7-14 days. There was some improvement. Slowly I could stay awake longer. It gradually became easier to walk across the room, or look at light coming in the windows for brief moments. I was a long way from ok, but the story I held onto was the one started in the ER. I’d be fine.

Over the next few weeks, I slowly started back at work with a reduced schedule. My brain felt tender which helped me remember to pace myself and be ever-conscious of the need to stop and rest. I shifted the story to allow that I was having a slightly slower than average recovery, but I’d still be fine.

It was when the constant tenderness abated, that my new struggle began. Without the ever-present reminder that I was injured, I became laser-focused on bringing my full and complete recovery into reality by sheer force of will and the seductive power of denial. I. Would. Be. Fine.

The following months revolved around convincing myself and those around me that I was better, despite ample evidence to the contrary. Their questions reflected the puzzlement familiar to anyone hit by sudden illness or disability, particularly those conditions invisible to the eye. Aren’t you better yet? Are you still dealing with that? You must be feeling better. My cousin’s had 3 concussions and he’s fine. Why are

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Moving From Denial to Acceptance Through the Stories We Tell

Part 2 of 3 n’t you fine?

Their questions and stories caused me to shore up my denial. Clearly I am supposed to recover, therefore I am recovering. As reality clashed with my denial, doubt-filled questions snuck in. Was there something wrong with me? Was I too weak to bounce back in the expected timeframe? Did I need to push myself harder?

After the third major crash from ignoring my limits landed me in a dark room for a week, I had to face that their stories, and the one I had gripped so tightly, weren’t the ones I needed at the moment. I needed my real story, one grounded in my actual experience, not crafted from denial. And I needed to pay attention to how I told the story to myself.

I have a brain injury. I have a disability. My brain simply cannot keep pouring out the energy I want to demand of her. That is the setting of the story – how it developed from there was up to me.

I’ve since learned through very painfully accumulated experience that I now have very real limits. Everything I do comes at a cost and it isn’t always clear what the cost will be. But acceptance allows me to be at the center of the story, not as the victim, but as the main character, learning where the limits lie and gaining skill at working within them with gentleness and compassion.

I have good days. Days in which I feel amazing – I feel almost like my pre-concussion self. The roaring in my head is so far in the background that I can pretend it isn’t there. I can jump from one task to the next. I can multi-task with what feels like ease. My eyes are working and the blurriness is gone.

And I fall for the mythical happy ending.

I fall for feeling good. Denial takes hold. I whisper to myself – “I’m better” – and quickly rewrite the story, tossing out any acknowledgment that I might not be ok, as I push more and do more.

Reality crashes in quickly. I’m not better. I had a good day. But I’m not better. Every push beyond my limits drained more and more of the precious energy my brain had to give, leaving no reserves. Roaring returns to dominate every corner of my mind like a weighty, physical presence. My vision blurs as my brain lacks the strength to bring the world into focus. 10 hours of deep sleep doesn’t make a dent in my fatigue. I can’t function and have no choice but to cancel everything – work, errands, time with friends and family – until my brain rebuilds enough energy to resume any type of activity. How long that will take is never certain. But it is clear that I am not better.

Acceptance, as it turns out, is not a destination. We do not achieve it and have it safely secured. It slips away easily, and I have to find my way to it again and again. I have to discard the notion that happiness only equals full recovery or I will continue to force myself beyond my current limits and crash. As I choose to again pick up the story that I do, in fact, have a brain injury, I nurture a vision in which happiness is achievable through acceptance, through finding the joy in the times I feel good, through practicing peace with the moments that feel like they want to tear me down, and through kindness to myself when it all feels too hard.

Over time, I learn how to plan for good days when I hope to have them, and manage them so that I don’t exceed what my brain can reasonably give. Functioning is a constant calculus, one that I still don’t have mastered. Every crash gives me more data, and I refine the formula a bit more. Acceptance has taught me to bring the awareness of my injury fully into my life, to let people in my circle know what the formula says about the likelihood I can be present with them. Whatever it is – work, shopping, hiking, coffee, a phone call – the answer is always qualified with a “depending on my brain.”

I continue to seek ways to heal my brain. Acceptance doesn’t mean complacent. Instead, it opens the door to start where I actually am, to provide myself with the compassion I need to move forward.

My relationship with illness and disability spans 21 years, starting with a cancer diagnosis, through navigating a child’s disability, to volunteering as an advocate for patients and families, to shifting careers, returning to school for a Master’s in social work and devoting my professional path to providing psychotherapy for those touched by illness or disability. With my brain injury, that relationship morphs once more. I now have a disability that impacts the way I inhabit my mind, body, and the world around me. My collective personal and professional experience has served as a valuable guide, arming me with tools I am grateful to have, but without finding my

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Hope for an auto-immune vaccine. #Fibromyalgia #MultipleSclerosis #ChronicFatigueSyndrome

Scientists have developed technology to teach our bodies to stop fighting itself and recognize its own tissues again.

“Inverse vaccine” shows promise to reverse autoimmune diseases without shutting down rest of the immune system

Reviewed by Megan Craig, M.Sc.
Sep 12 2023
A new type of vaccine developed by researchers at the University of Chicago's Pritzker School of Molecular Engineering (PME) has shown in the lab setting that it can completely reverse autoimmune diseases like multiple sclerosis, type 1 diabetes, and Crohn's disease -; all without shutting down the rest of the immune system.
A typical vaccine teaches the human immune system to recognize a virus or bacteria as an enemy that should be attacked. The new "inverse vaccine" does just the opposite: it removes the immune system's memory of one molecule. While such immune memory erasure would be unwanted for infectious diseases, it can stop autoimmune reactions like those seen in multiple sclerosis, type I diabetes, rheumatoid arthritis or Crohn's disease, in which the immune system attacks a person's healthy tissues.
The inverse vaccine, described this week in Nature Biomedical Engineering, takes advantage of how the liver naturally marks molecules from broken-down cells with "do not attack" flags to prevent autoimmune reactions to cells that die by natural processes. PME researchers coupled an antigen -; a molecule being attacked by the immune system-; with a molecule resembling a fragment of an aged cell that the liver would recognize as friend, rather than foe. The team showed how the vaccine could successfully stop the autoimmune reaction associated with a multiple-sclerosis-like disease.
In the past, we showed that we could use this approach to prevent autoimmunity. But what is so exciting about this work is that we have shown that we can treat diseases like multiple sclerosis after there is already ongoing inflammation, which is more useful in a real-world context."
Jeffrey Hubbell, the Eugene Bell Professor in Tissue Engineering and lead author of the new paper
Unwinding an immune response
The job of the immune system's T cells is to recognize unwanted cells and molecules -; from viruses and bacteria to cancers -; as foreign to the body and get rid of them. Once T cells launch an initial attack against an antigen, they retain a memory of the invader to eliminate it more quickly in the future.
T cells can make mistakes, however, and recognize healthy cells as foreign. In people with Crohn's disease, for instance, the immune system attacks cells of the small intestine; in those with multiple sclerosis, T cells mount an attack against myelin, the protective coating around nerves.
Hubbell and his colleagues knew that the body has a mechanism for ensuring that immune reactions don't occur in response to every damaged cell in the body-; a phenomenon known as peripheral immune tolerance and carried out in the liver. They discovered in recent years that tagging molecules with a sugar known as N-acetylgalactosamine (pGal) could mimic this process, sending the molecules to the liver where tolerance to them develops.
"The idea is that we can attach any molecule we want to pGal and it will teach the immune system to tolerate it," explained Hubbell. "Rather than rev up immunity as with a vaccine, we can tamp it down in a very specific way with an inverse vaccine."
In the new study, the researchers focused on a multiple-sclerosis-like disease in which the immune system attacks myelin, leading to weakness and numbness, loss of vision and, eventually mobility problems and paralysis. The team linked myelin proteins to pGal and tested the effect of the new inverse vaccine. The immune system, they found, stopped attacking myelin, allowing nerves to function correctly again and reversing symptoms of disease in animals.
In a series of other experiments, the scientists showed that the same approach worked to minimize other ongoing immune reactions.
Toward clinical trials
Today, autoimmune diseases are generally treated with drugs that broadly shut down the immune system.
"These treatments can be very effective, but you're also blocking the immune responses necessary to fight off infections and so there are a lot of side effects," said Hubbell. "If we could treat patients with an inverse vaccine instead, it could be much more specific and lead to fewer side effects."
More work is needed to study Hubbell's pGal compounds in humans, but initial phase I safety trials have already been carried out in people with celiac disease, an autoimmune disease that is associated with eating wheat, barley and rye, and phase I safety trials are under way in multiple sclerosis. Those trials are conducted by the pharmaceutical company Anokion SA, which helped fund the new work and which Hubbell cofounded and is a consultant, board member and equity holder. The Alper Family Foundation also helped fund the research.
"There are no clinically approved inverse vaccines yet, but we're incredibly excited about moving this technology forward," says Hubble.

Source:
University of Chicago
Journal reference:
Tremain, A. C., et al. (2023). Synthetically glycosylated antigens for the antigen-specific suppression of established immune responses. Nature Biomedical Engineering. doi.org/10.1038/s41551-023-01086-2.
#autoimmune #Vaccine

(edited)
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How can others show up for you on a bad health day?

We’ve probably all heard this (or a similar) well-meaning question at least once along our health journey: “How can I help?” While there may be many times you want someone to just do — instead of asking you what they should do — it can also be incredibly helpful to tell (or show) someone in your life how they can best show up for you.

Not only will it help you on a bad health day, but it has the power to improve your overall relationships with your loved ones. So, if someone asks, how can others show up for you on a bad health day?

#MightyMinute #MentalHealth #Anxiety #Depression #ChronicPain #ChronicIllness #RareDisease #Disability #Trauma #Fibromyalgia #Cancer #Caregiving #CheckInWithMe

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