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All the best this Christmas, Fellow Mighties. 🌲🌲🎅

To anyone struggling right now for whatever reason, we are all here together to celebrate Christmas together, and to love and support each other.

Also, a quote from a little story that many know. #conqueryourmind #MentalHealth #Anxiety #Depression #Loneliness #Grief #Christmas #AutismSpectrumDisorder

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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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Keeping up w/ meds, pharmacy & insurance can be grueling. Yet over time I’ve embraced them. What is your relationship w/ your meds? Love? Hate? Both?

Recently I've had a change of perspective about all my meds, doctors, specialists, hospitals, psychiatrist, therapist, physical therapists, pain clinics, caseworkers, and the many types of treatments I get. I have come to be thankful that I have them all and no longer resent them, no longer resent how physically and emotionally draining they can be, no longer resent the days I have lost when I could be working…or playing! I stopped venting and complaining about them in the bulk of my conversations, and making them the focus of the (often limited) emotional energy I do have left many days.

It took awhile and some really tough and scary times…surviving two pandemics: being HIV+ in the 80’s, and many serious complications from it; and then decades later I got Covid that had me taken by ambulance to the ER with over a dozen symptoms, and having to learn how to walk again in rehab; heart surgery; multiple concussions; being in a coma for 4 hours after and accident; mental health hospitalizations…including the arrests I had during two manic episodes; and struggling with addiction. It took really stepping back away from it all and then suddenly I came to find a new perspective, came to the realization of how blessed, loved…and yes, lucky I am. I now choose to see all I deal with currently as tools, resources, and opportunities that keep me alive, help me heal, stay balanced, and I can now see how they are leading me to good health and having the opportunity to thrive.

Yes, I do have well over three dozen doctors, departments, and health care providers in my phone, and probably have seen or worked with over 20 this year, averaging 4-6 health appointments a week for most of the last year. And yes, I take 16 medications, and right now I have a few challenges that have created limitations every day, needing the assistance of mobility devices, needing rides most places and when I drive now using handicapped parking spaces. I stopped feeling sorry for myself and playing the victim and instead choose to smile and laugh during health appointments, joking about the crazy, big, obnoxious migraine glasses I wear everywhere and sharing how I can't wait to run a marathon with others who I meet that are also struggling with physical health limitations. But am I joking? Do I really see myself running, rock climbing, kayaking, going camping and getting back on my favorite hikes again? I choose to hold on to that hope and believe I can overcome the obstacles in my path.

I am realistic though. I also accept that this might be unlikely, and that I will have many of my current health challenges the rest of my life. Yet I give thanks every night for another day, the blessings I do have in my life, the relatively good health I do have in spite of it all. I choose to make sure to observe those around me at the hospital, when I go for (only) outpatient appointments, see how some are in worse shape than I’m in, hear the helicopters land at the hospital, and see the ambulances come to the ER, knowing how scary that can be! I observe other people at Physical Therapy with their head in a cage, or without a limb, I walk past the mental health ward that was my home (twice), am humbled when I read many posts of what others go through here in MHC and remind myself it COULD ALWAYS BE WORSE. With this new perspective, comes gratitude and appreciation…and I choose to smile.

Now to be honest this is a work in progress, I still can wake in the morning and feel sorry for myself after I get out of bed with four body parts hurting before my first step. I can get depressed due to having so many med changes recently. I have even called Mom in total fear before I went for a biopsy, while waiting for news from an ultrasound of something else, and having just found out a procedure I had recently might need to be repeated… and all of a sudden I realized how overwhelmed and scared I was, broke down and cried. Mom “caught me” as she has so often and uplifted & encouraged me. Then a funny thing happened later...I broke out laughing at the magnitude of it all, then walked out of the doctors with my cane and funky glasses and remembered it HAD been worse…but I’m still here!

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How do you feel when you see your pill bottles? Take your meds every day? Go to regular doctors appointments? I invite you to shift your perspective too… if you haven't already…because even if nothing changes with your health challenges, how you feel about them can make all the difference!

#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 #MightyMinute #MightyQuestions #conqueryourmind #RareDisease #BrainInjury

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How do you talk to someone about mental illness when you have a language barrier?

I've come to a point where it feels important for me to talk to my mother about my mental illness. Unfortunately mental illness is a huge taboo for her plus English is not her first language. Have you ever been in this situation before? How did you get over the language barrier? Did you give up and managed the relationship some other way? I would love to hear your stories or tips.

#conqueryourmind #Anxiety #Depression #ComplexPosttraumaticStressDisorder

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Are You Suffering?

Suffering. I read something a while ago about not using that word, and I've been thinking about it since. I completely agree that it isn't wise to use it indiscriminately to say something like, "They are suffering with _____." Maybe some people are, but others aren't. That's 100% true.

Of course, not everyone's experience of suffering is the same. It goes without saying that not suffering is perceived by others. And one person's might suffer when someone else in the same situation feels joy.

On the other hand, to avoid using the word risks minimizing someone's experience. For instance, I suffer from/with erythromelalgia. I just do. It causes pain, anguish, and fatigue. When I get a migraine, I'm suffering. If I were to suggest that I did not suffer, I would be lying.

That's not to say suffering is my only experience of EM. I don't always suffer, and sometimes I have mixed emotions even during my worst flares. Pain and suffering are not synonymous.

There are similar phrases that people use without thinking, like "confined to a wheelchair." When I use a wheelchair, I'm not confined to it. A wheelchair gives me mobility and access that I wouldn't otherwise have.

The word and idea of "suffering" is similar. I'll be much more aware of how to use and not use the word.

Major religious traditions recognize the role of suffering in our lives. It's even the First Noble Truth of the Buddha. "The reality of dukkha." During the next few days, Christians commemorate the suffering of Jesus on Good Friday.

What about you? Do you suffer? And what are your thoughts about using the word "suffering?" At minimum, suffering is complex. Thanks!

#ChronicPain #ChronicIllness #Erythromelalgia #Fibromyalgia #RareDisease #Fibromyalgia #MentalHealth #Anxiety #Depression #ChronicFatigueSyndrome #PTSD #InvisibleIllness #CheerMeOn #MightyTogether #conqueryourmind #DistractMe #Buddhism #christiansonthemighty

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Chronic Pain at Night

Me: I'm tired. I'm going to bed now.

Erythromelalgia: I think we should stay up for another 3 hours.

Me: Why do you do this every night?

EM: I'm just a night owl, I guess.

Me: But I'm not.

EM: You can't expect me to stay awake all by myself.

#Erythromelalgia #ChronicPain #ChronicIllness #RareDisease #MightyTogether #ComplexRegionalPainSyndrome #Anxiety #Depression #InvisibleIllness #CheerMeOn #MentalHealth #conqueryourmind

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Thank You for Being You

I found The Mighty several years ago on the recommendation of my nurse practitioner. Since then, I have been blessed to learn from others about strength and resiliency. The deep honesty from people sharing about their pains, fears, and successes has helped me deal with my own chronic illness. I've also been able to participate in the conversation about erythromelalgia, which is my own rare disease. Everyone who shares from the storehouse of their own lives enriches everyone else. So, I'd just like to say Thank You. There's nothing quite like The Mighty, where people can be honest about what may seem like weakness, but in reality that is an expression of our strength. Human authenticity in community with others is what brings out the best in all of us.

#MightyTogether #ChronicIllness #ChronicPain #invisibleillnes #RareDisease #Erythromelalgia #MentalHealth #Anxiety #Depression #CheerMeOn #DistractMe #Fibromyalgia #conqueryourmind #CPTSD #ComplexRegionalPainSyndrome

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What time is it?

My midnight flare finally came down somewhere after 2:00 AM, but when I woke up I wondered why it was so late. I thought I had lost an hour somewhere. Then I realized the clocks moved forward. #ChronicPain makes for long nights. Regardless, I hope you're having a good day. I appreciate #TheMighty community. Everyone here shares so much strength and understanding. Thank you and God bless! #MightyTogether #ChronicIllness #Disability #DistractMe #MightyMinute #ChronicPain #Depression #Anxiety #Relationships #MentalHealth #Hope #Erythromelalgia #Fibromyalgia #Insomnia #Upallnight #conqueryourmind #MightyMinute #Love

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When the Darkness Falls

As the night fall comes illuminating the views with shades of the sunset aglow, dancing just above the rolling mountain tops...it is now my mind begins to flow...to wonder...to dream a new day...

Hoping for a tomorrow, visions of happiness, joy, life beyond...Beyond this place I'm stuck in...

The evening seems a little quieter still, if that's even possible...only creaks of the house will I hear...

Followed by the evening sights & sounds of nature...Lightening bugs dance...Crickets chirping, rustling of the brush, with squirrels, deer, rabbits..

Nature without a hint of human existence.

The days seem to simultaneously flash by in slow motion...Into the night...

Day in day out, the phone never rings, the only time it gets its use is when I reach out to others..Or spam...

I wonder if they'll want to call when they no longer can...I wonder if they'll think of me like I think of them...I often wonder how the knot that tied us together shredded so easily after I became ill...

Was I only worthy when I was able to do everything for them? Was I only valued for what I gave and not for who I am? To them?

I often dream to be someone worthy of them, but that someone is not me...

No matter what the future holds, I know Ill always be remembered as the "woman" that loved & gave with her whole heart...and never asked for anything in return...I didn't ask, I didn't expect...

Here Im left piecing myself back together...

Without regret, learning to love myself

Love with your whole heart, not bits & pieces..

#ChronicIllness #ChronicPain #Depression #Anxiety #conqueryourmind #Ileostomy #Trauma #liveloved #Kindness #Loveothers #givegrace

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