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Stripes & Stars of Rare Disease by Melanie R. #RareDisease #ChronicFatigue #MitochondrialDisease #IdiopathicIntracranialHypertension #ChronicPain #InsideTheMighty

Stripes & Stars of Rare Disease
By Melanie R.

Our faith as our anchor.
Our hope’s guiding light!

Amidst all the struggle,
we share in our plight.

Bringing awareness;
to comfort and guide.

To face rare disease
locked arms-
side-by-side.

A journey set forth,
uneven terrain.

Traveling on suffering,
forged purpose in pain.

A chorus of voices
uniting in song-
ring out together,
but battles go on…

Our trials and triumphs,
resilience and strength,
brought us all here
on rare disease day!

So join us in chorus,
wear stripes to support-
our healing begins,
it starts in our heart.

For stripes shine like stars,
by stripes we are healed,
Restoral by scars
Our voices they hear.

Remember Rare Disease Day is February 29th, 2024!
We share in the suffering and the glory!
Stay strong and God bless you all in a mighty, mighty way!

#ChronicIllness #ChronicPain #IrritableBowelSyndromeIBS #ComplexRegionalPainSyndrome #AxonalNeuronalNeuropathies #InsideTheMighty #MightyPoets #MightyTogether #christiansonmighty

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Feeling broken? Only seeing your flaws? Sometimes those things we feel are flaws are actually what makes us unique, special and extraordinary!

I can get caught in that awful loop of beating myself up, only seeing my flaws, only recognizing things I haven’t done instead of giving myself credit for things I have done, getting stuck in self judgment, only seeming to hear my inner critic’s voice, I can lose all my self confidence, let my self esteem dip and things can look pretty bleak.

Over time more and more I have been able to catch this in the moment, pause, breathe, re-set, and then be gentle with myself and allow myself to shift my energy. I can then take first steps towards better self care…and reverse that repetitive loop, replace it with self respect and start to believe in myself! One situation at a time, I’m getting better … and every time I succeed it can get a little easier the next time. I can see that I have grown along my path and although it can be very hard for me to accept, there is unique beauty to the journey I have been on. I am not broken - I am strong - I have been accepting my flaws and see that as I have picked myself up over and over I have filled myself with gold!

~~~~~~~~~~~~~~~~~~~~~~~~~~

I find doing a gratitude list can help. A while back it was recommended I process a gratitude list every morning. I like to think of my blessings: roof over my head and food on the table; a car that runs and being able to afford insurance & gas for it; MY HEALTH…here I go through all my 5 senses thankful they all work, touch and feel my legs that didn’t at one point and give thanks that parts of me are healing but by bit ! I give thanks for my whole support network: great doctors & health providers, my friends, and my family!!! I find after doing this I start off the day feeling much better about myself!

What is on your gratitude list?

#MentalHealth #Depression #Anxiety #SocialAnxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #COVID19 #Parkinsonism #Concussion #BrainInjury #Migraine #Headache #BackPain #neckpain #PhysicalTherapy #HIVAIDS #PTSD #Stigma #PeripheralNeuropathy #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe

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SECRET PLACE by Melanie R.

Secret Place by Melanie R.

I close my eyes, but now I see.
Climb up into His apple tree.

Go running through the golden hedge,
blessed orchard on the river’s edge.

A prayer to lift the lowly soul,
a filling from a flowing bowl.

The sea steps forward to the sands,
as music plays from angel’s hands.

Strumming strings amongst the sky,
refreshing breeze calls, “Adonai!”

Hallelujah Lord!
We praise your name!

Safe in your arms,
our secret place.

#ChronicIllness #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #MightyPoets #InsideTheMighty #HypothyroidismUnderactiveThyroidDisease

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I enjoy watching sports, which can be a distraction from my health challenges. Are there sports, shows you binge watch, or movies that help you too?

Being passionate about sports is a trait my Dad passed on and instilled in me from an early age, and watching and talking about them together was a very bonding experience we had that built over the years. When I was young I was very blessed and had the opportunity to attend a lot of games with him live: football & basketball, some baseball & hockey games, and we even went to Indianapolis for the Indy 500 races twice. His father had taken him to the big race a few times too and to many other games when he was a child, which I think had the same impact on him!

I was never a good athlete, but under his tutelage I became very interested in drama and intrigue with sports and began to understand, appreciate and enjoy all the nuances of the games: teams - their players & coaches, stats, and strengths & weaknesses; types of plays; strategies; the history of the sports; … and I adapted Dad’s favorite teams & players and we followed them very passionately, intently and took the games very seriously. To this day I can get depressed after a game my team loses, and as a kid I’d pout and be in a really bad mood, often for days.

We watched games and followed our teams, not just the games, but almost every day, as we even fought for who got the Sports page first! His excitement, curiosity and dedication were contagious.

As I got older and I moved away to other places I made the “pilgrimage” up to two hours every Sunday to watch football with Dad & on Memorial Weekend went to watch the Indy 500 with him almost every year. We didn’t even miss a minute of games, with Mom being part host, part cook & part waitress … bringing us big homemade deli sandwiches, her legendary guacamole, and yummy desserts she baked. Then during commercials sometimes we would both sprint to different bathrooms for a break, rushing so as not to miss a second of the games!

However, I recently realized I have actually tried to avoid watching big games there since he passed away. I just admitted to myself that over 3 years after he died it still can be emotional watching games in the room where we watched events together. It can be a sad & empty feeling🥲 The first games I watched without him there soon after he died were some of the few things that triggered me to cry when I wasn't processing things well yet. When I sat there in my familiar chair and our team scored I would turn to high five him and saw the empty chair he always sat on next to me and suddenly deeply felt his absence… It was one of the first ways I truly realized he wouldn’t be there to share experiences with me (physically) anymore. It hit me hard. The first time I watched a game without him I completely broke down in tears which was the strongest emotion I had experienced since he died to that point.

I realized that sharing sports with him was so much more than the games, it was something we shared together in almost a ritual format for decades, and looking back I remember how much I always looked forward to being with him for each coming game. So I still am deeply invested and tuned into sporting events and that focus can help me to take a break from pain, depression, anxiety, fear & worry. It’s all I think about for that 2 ½-3 hours, sometimes longer.

🏀🏈⚾️⚽️🏒⚽️⚾️🏈🏀

Do any of you take comfort, find refuge, a healthy escape and/or a distraction in watching sports? Or are there other things you enjoy watching like binging episodes of your favorite show? Or watching a movie trilogy over and over? Or watching thrillers that keep you on the edge of your seat, or action or drama movies that take your complete focus like tunnel vision? Or do you enjoy watching nature, animal or history channels? Was sharing them with family a part of your childhood?

What engrosses & entertains you the most? How do these affect your energy and emotions when you watch them? Do you find it a much needed window away from thinking about your health challenges like I do?

#MentalHealth #Depression #Anxiety #SocialAnxiety #LossOfAParent #Grief #Disability #ChronicPain #ChronicIllness #Selfcare #BipolarDisorder #COVID19 #Migraine #Headache #HIVAIDS #PTSD #Stigma #BrainInjury #Concussion #BackPain #neckpain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe


@texassonrisa
@sparklywartanks

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Nocturnal Light by Melanie R. #ChronicIllness #ChronicPain #MitochondrialDisease #IrritableBowelSyndromeIBS #CheerMeOn #MoreDiseases #IfYouFeelHopeless

Nocturnal Light

I was the school spelling bee champion in my 8th grade class. I can remember the ambivalence of walking up to the microphone; looking out into the crowd. Only squinting above the sea of silhouettes, as the stage lights were blinding.
It was down to myself, and one student.
The assembly room was silent except for my quivering nerves, and best classmates whispering cheers in the front row.
Nocturnal was my winning word!
Nocturnal?…meaning darkness?
Confusion…? How was this my word?
It would all become crystal clear, and quite a life theme through the pitch black reality of chronic pain/rare chronic illness.
A weighted stone tossed off the cliff in the nocturnal abyss which is actuality of chronic pain/illness. Splash! It will never reach the bottom.

My prize for winning the spelling bee?
A dictionary. A book of words and meaning.

“Nocturnal…N-o-c-t-u-r-n-a-l”…
A holy transformation from nocturnal darkness into His everlasting light.

It was Heavenly Father foreshadowing my predestination, and ultimate full spiritual restoration. I would persevere nocturnal darkness enduring chronic pain; but I would indeed find true meaning in His Holy Book.
Many eyes, on earth, and in the heavens; witnessing my true living testament for which I have become very thankful for!
My true reward and fulfillment of light!
Receive The Light Jesus came to bring for all of us! All praises to The Most High illuminating our way!

The sharpest pain
will overcome;
The darkest night,
The Rising Son.

Strewn bright across
nocturnal nights,
A torching dawn
of glowing Might!

He brought me forth across the stage,
and spelled it out,
a glorious praise!

Job 12:22
He uncovers the deep out of the darkness, and brings deep darkness to light.

John 8:12
Again, Jesus spoke to them, saying, “I am the light of the world., Whoever follows me, will not walk in darkness, but will have the light of life.
Psalm 112:4
Light dawns in the darkness for the upright; He is glorious, merciful and right.

#ChronicPain #ChronicIllness #InsideTheMighty #RheumatoidArthritis #InsideTheMighty #MightyPoets #MightyTogether #Christians

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Chronic Pain by Melanie R. #ChronicIllness #ChronicPain #RheumatoidArthritis #MitochondrialDisease #BackPain #MightyPoets #MightyMoment #TrigeminalNeuralgia

Chronic Pain

Through battles of despondency,
Rare chronic illness muckings.
Hear echoes of their laughing,
rub hands of their stalkings.

Stinging pain;
disasters.
A spiritual world war.
Meant to divide and conquer,
those standing by the sword.

My burden of my symptoms,-
it’s tortuous attacks.
They’re one behind the other;
My light seen,
Followed.
Tracked.

A ship in fog kept idled.
My engine just won’t start.
Reaching for my Bible-
as my body falls apart.

Can spirit separate from body?
to escape the suffering?
Crude hell of inflammation,
raging fire from within.

A rumbling embodiment;
endless lava burning–
proclastic hyperglow
emitted from my yearning.

Feel branded.
Tormented.
Hot pokers of this thorn,
attacking my body…
I lay here and I mourn.

Felt unclothed out in winter,
I shivered on my own.
I needed Him beside me,
to clothe me, bring me home!

A martyr full of valor,
burned alive for faith,
a yesteryear believer,
the blood runs through my veins.

Coursing and crying for justice in pain, Lamenting in writhing…
My tongue calls his name!

He heard me,
procured me,
Bottled my tears.
Filled me of healing,
replaced all my fears.

Cut open,
I’m slaying.
Filleting of flesh,
I share in His suffering,
soul-fired and blessed!

In cells of his captors
Paul sang of His songs,
The Word was his strength-
I sing all day long!

Have rhythm,
Give glory!
Mountains have moved!
My symphony of suffering,
sweet melody of truth!

#AutoimmuneImmunodeficiency #CheckInWithMe #InsideTheMighty #Bursitis #ComplexRegionalPainSyndrome #MightyTogether #BackPain #RheumatoidArthritis #MightyPoets #ChronicPain #MitochondrialDisease #Disability #Christians on the mighty

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It’s never too late to start anew, shift our attitude, perspective & outlook. Who we’ve been in the past can change to who we want to be today!

I find that learning from my experiences and changing the way I process, respond and act in challenging times can empower me with hope and belief that I can live and grow and become a better man...one choice at a time! In my men’s group we talk about becoming a man of integrity and being authentic. Living like this requires focus, intention, determination, commitment and a desire to keep fighting to get better! The changing of my attitude and actions can greatly affect my day to day mental health and empowers me to rise above depression, anxiety, fear and worry by being integrated in my own growth and development! This is an ongoing process...one day at a time, even one moment at a time...and when I fail (which I often do) the key is to not beat myself up or get too down, but just pick myself up and start again anew! This is easier said than done but actually seeing the positive results in my life and my evolution can be enough to make me want to always continue to move forward. My mantra is just “Do the next right thing”!

#MentalHealth #Depression #Anxiety #BipolarDisorder #Disability #Selfcare #InsideTheMighty #MightyTogether #DistractMe

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Scars and Healing #ChronicIllness #ChronicPain #RheumatoidArthritis #MitochondrialDisease #SjogrensSyndrome #IrritableBowelSyndromeIBS #CheckInWithMe

Scars and Healing

Scars by definition are a healed wound. Think about the scars you’ve collected on your body throughout your life.
The painful bumps and bruises, falls and surgeries that formed raised cuts that were once bleeding, and needed tending to in the process toward ultimate healing.
You cleaned, bandaged, checked to ensure there were no infection, and overtime witnessed, and experienced the miracle of healing. A lasting symbol of pain, time, and healing forming a perfect imperfect scar now in its place.
Resurrected Jesus chose to keep the scars in His hands, and feet, even after ascension, as a reminder to us of all he endured for us as a living sacrifice.
A sign of victory over death!
Jesus knew the doubting Thomas’s of the world would not believe unless they saw with their own eyes the scars of His suffering.
A correlation to some of the struggles of invisible illness and chronic pain itself, as some symptoms cannot be seen.
I scan my body over the countless scars,…seen and unseen. Some on my body, and some on my heart, but through life’s suffering, I have been transformed to a scar of healing.
My scars are victory over pain! An overcoming with unabounding strength (chadzek) to persevere in chronic illness, and life’s true purpose!
My countless surgery scars are a reminder of my calling to use my voice, and all I’ve healed along the way.
Each scar was painfully earned through a process of long-suffering and healing; and my voice will give praise, honor, and glory!
In my story, as I sing this song of hope of full restoration, I too, have chosen to keep my healed scars as my testimony of sealed faith to our Glorious Father!
My question to you is, will you keep your scars?

#christiansonmighty #IfYouFeelHopeless #InsideTheMighty #CheckInWithMe #Caregiving #Gastroparesis #BackPain #CentralPainSyndrome #ComplexRegionalPainSyndrome #MightyTogether #christiansonthemighty

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How do you decide when to push through challenges like pain, discomfort & fatigue? OR when to listen to your body, slow down, rest, or call it a day?

Being uncomfortable and uncertain have been challenges I have faced very regularly in my life, and I have dealt with so many times that were “hard”, full of pain, made me anxious or angry, wore me down, and tested my fortitude & resilience. I used to always fight and push through these obstacles and challenges every day facing things head on. I was stubborn, determined to keep going no matter what…and I got a lot done, stayed busy and proved to myself I wasn’t a quitter and could accomplish anything I put my mind to. I certainly did grow in many ways and find out a lot about myself and what I was capable of doing, and gained confidence and learned to feel comfortable with adversity…

…Yet I did so without realizing I was pushing my body to its limit and maxing myself out! I wouldn’t pay attention when my back was screaming to be rested, my neuropathy in my legs and feet burned so much and they begged to be kicked up & treated, and/or when I had a blistering migraine that made me so sensitive to light, sound & movement, and completely drained my energy. I still pushed through.

Then something happened … I don’t remember who it was or what they said, but I had a light bulb go off, an epiphany of sorts. It changed my thinking and how I have chosen to function since then. I realized I don’t have to always be strong, determined and push myself so hard just to prove (to myself) that I am willing and able to get things done.

I can just pause for a moment, breath, and do a little personal inventory to see how parts of my body are really feeling, then if they are telling me to stop I have learned to be gentle with myself and take a break, not feel like I have to do everything on my ToDo list that day. Then I almost always find that I can just call it a day…. I can table everything left on my list til the next day or two, and my world won’t come crashing down. I have learned that I am almost always the one putting all the pressure on myself, I am the one who sets unrealistic goals, I am the one that doesn’t want to admit to myself that I have numerous challenges that require regular care and that I have limitations of what my body can do.

I am disabled and that’s ok. It’s ok to not be 100%, It’s ok to need to use a cane, It’s ok that I get brain fog & stutter, it’s ok that I have to wear obnoxiously big migraine glasses in public, it’s ok to need to use handicap parking spaces…and it’s ok if some days I don’t complete everything on my list, and instead choose to be mindful that I’m tired and pushing through would make it worse.

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Yet, some days I’m tired but I still want to go on the daily walk my Physical Therapist has finally cleared me to go on, I still want to finish a project in my kitchen, join my family for a big dinner, or go to the men’s group meetings I have missed for a long while. Then sometimes I still push it and do them, but only if first I can honestly tell myself it’s not too much and that I will also choose to stay mindful along the way and just stop when it’s time to stop!

For me it’s about balance, acceptance and practicing good self care! A lifelong journey…one challenge at a time!

What have you learned about your body? Can you step back, scan yourself and let yourself rest if necessary? Please be gentle with yourselves … dealing with multiple health challenges can be tough enough, I’ve learned that my stubbornness and pride have often made things worse!

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #DistractMe #MightyTogether #conqueryourmind

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When you are depressed or in pain what would be the most supportive thing a friend or loved one could say to you? What would be the most comforting?

I can get pretty bad social anxiety these days, and I always fear people will say “What have you been up to…?” I know they would mean well, but the honest answer would be that I've been busy going to doctors, PT & therapy appointments..and practicing self care… treating pain in four parts of my body, off & on for hours each day. But I really don't want our conversation to focus on discussing this…as I often feel a need to explain further, answer the inevitable questions and hear their concern, and often sympathy I’m definitely not looking for!

Even if people say positive things like “You look great!” I think… if they only knew how I feel INSIDE…(I have been dealing with numerous Invisible Illnesses)

Can you relate to these?

What would you like people to stop asking? What have people said that you felt was callous, unsympathetic or uncaring? What words have been the most hurtful?

When you are struggling, what can people say that would help the most? How can they let you know they’ve got your back? What if you could have someone say (or not say) anything you want to make you feel better…What would you want to hear?

Please share your responses to the question(s) that speak to you the most ….your experiences, and what you would (and wouldn't!) like to hear. I find that in hearing other members' responses to them they often could basically be telling my story and we are on similar journeys. I have found this opportunity to empathize with each other here helps me feel less alone!

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👍We just went soaring past 2,500 members!👍 It seems that I just posted about 2,222 so recently. I am humbled and grateful that you all have joined me here and are sharing this journey connecting with each other! It’s become more than I even imagined when I started this group a few years ago…let’s keep asking for support, offering it, and empathizing & being there for each other! 🤗🫶🩷🤝👏🤝🙌🤝🩷🫶🤗

#MentalHealth #Depression #Anxiety #Disability #ChronicPain #ChronicIllness #Selflove #Selfcare #BipolarDisorder #BipolarDepression #ADHD #ObsessiveCompulsiveDisorder #COVID19 #Migraine #Headache #HIVAIDS #PeripheralNeuropathy #BackPain #Addiction #AddictionRecovery #IfYouFeelHopeless #Hope #CheckInWithMe #InsideTheMighty #MightyTogether #DistractMe #mighty #conqueryourmind

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