Autonomic Dysfunction

Create a new post for topic
Join the Conversation on
Autonomic Dysfunction
6.6K people
0 stories
446 posts
About Autonomic Dysfunction Show topic details
Explore Our Newsletters
What's New in Autonomic Dysfunction
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

Leaning on knowing my Resilience -Personal Example

Yesterday to this morning for me is another example of why I am so thankful every day that I took the University of Pennsylvania’s online course on learning and applying resilience skills, so grateful that I typed up every single word that was taught, and that I recently started this group to share this critical knowledge from the actual people that researched this.

U. of Penn’s definition of Resilience is not only the ability to bounce back from adversity, but also the ability to grow from challenges.

In this course, Dr. Karen Reivich focuses on the psychosocial aspects of resilience. The aspects of resilience that are determined by your psychology, and by your social relationships and interactions.

So, yesterday was one of the rare days within recent years that 1) my fatigue completely took hold of me, and 2) my brain’s sleepiness was to the point that most of my brain would not wake up - all day- and I could see myself not able to function practically at all.

It’s not like this was the first time this ever occurred, and it’s always a possibility, but it is still very hard to watch myself go through this and it is also very hard to wake up from the next morning—the kind of “slap in the face” reminder that oh yeah, I live with a chronic illness that can at times, and I will never know when, will have me almost completely disabled.

So, this morning I woke up with this “setback.” And I look at it like I was brought to a “fork in the road.” And now while yesterday’s adversity was not in my control, this morning, which I always work to look at as a fresh, new day full of good possibilities, it was actually now in my control as to which way I let myself go in my mind at this “fork in the road.”

Of course upon waking up, my mind started on autopilot and took me the wrong direction. Then, the moments that I made myself ready for, the clarity, the practice of never staying in autopilot and moving forward on purpose, with intention, with as much control as I can have and before it gets too hard to get the control back.

I turned my brain’s thinking around, I put my focus on the truths that were on my side- including but not limited to the fact that I Have Bounced Back From Much Worse Than This…;and I turned my mind away from dangerous cognitive distortions and right then and there pretty fast I would not let the negativity bring me downward.

Yesterday, I still had the mindful awareness to apply radical acceptance, non-judging, patience, trust, and just letting be with what is — for this one day -these are part of the 9 Attitudes of Mindfulness that I have begun to write posts about here for you. These all link together with the skills of resilience.

What you will learn too here, amongst other important things is that -it is when we start paying attention to our inner experience, that we rapidly discover that there are certain thoughts and feelings and situations that our mind seems to want to hold on to.

And amongst other what are called “resilience interventions” that I applied were these skills that I committed to in living with intention- what are called “protective factors” that I nurture every single day so they will be there for me when I need them most, when I have to dig deeper from a wider range of resources —

I learned the Critical Skill of Optimism —which gives us the attitude to continue to persist —and I learned how Optimism is the most important factor in resilience and in all of life - well-being and strong relationships;
I commit myself to living for clarified purposes that are bigger than myself, this is not limited to relationships, it is even better for our wellbeing to have an attachment to something larger than yourself which might also be to a mission, to a purpose, to an idea, something that you believe is critically important and worth fighting for (by the way, my personal mission is that all of you are worth fighting for);
I learned what my Personality/Character Strengths are and I learned how to leverage them;
I Developed Mental Agility;
I learned how to create a “buffer of positivity”, and what is called the “Broaden And Build” theory of positive emotions;
I learned how to take control of “thinking traps” by applying “cognitive strategies”…

All of these are what is so effective about the newest branch of psychology that I approach my life by to overcome all that I do overcome— where in addition to everything else, we build strengths supports.

Positivity Psychology, a somewhat newer term, describes a dual approach to mental health- where we build strengths supports, and healthy lifestyles, as well as treating illness and distress.

AlI of this is all what I will keep breaking down into chunks in most of my posts here to this group.
This takes some work first on my part - to keep breaking down the many variables- so bear with me.

#MentalHealth #MajorDepressiveDisorder #ChronicFatigue #ChronicIllness #Disability #ChronicFatigueSyndrome #Depression #Anxiety #MoodDisorders #MotorDisorders #BipolarDepression #BorderlinePersonalityDisorder #AutismSpectrumDisorder #AnorexiaNervosa #EatingDisorders #BipolarDisorder #Selfcare #ADHD #Relationships #FamilyAndFriends #Fibromyalgia #ChronicPain #Cancers #Addiction #Selfharm #SuicidalIdeation #SuicidalThoughts #SuicideAttemptSurvivors #Suicide #ComplexPosttraumaticStressDisorder #PTSD #MyalgicEncephalomyelitis #PostTraumaticStressDisorder #Trauma #RheumatoidArthritis #SocialAnxiety #LearningDisabilities #CrohnsDisease #GeneralizedAnxietyDisorder #PersistentDepressiveDisorder #RecurringMDD #TreatmentresistantDepression #Mindfulness #MDD #TRDSupport #EhlersDanlosSyndrome #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #MultipleSclerosis #LymeDisease #MajorDepression #ClinicalDepression #MotivationMonday #resilience #Grief

Most common user reactionsMost common user reactions 12 reactions 2 comments
Post

Feeling alone

Where I'm from autonomic dysfunction is very unheard of, and a list of symptoms down played as either anxiety or over dramaticness made me feel distant. I knew something was wrong, and no one listened or even cared. It took my heart rate averaging dangerous levels to finally get help. I feel so distant, especially when explaining this condition to those who don't understand it. I'm kind of mad I had to spend so much time alone because of it. I'm not really sure what to do or say at this point.

#AutonomicDysfunction #Anxiety #lonely

Most common user reactions 7 reactions 3 comments
Post

Scared for the future #Anxiety #AutonomicDysfunction #EhlersDanlosSyndrome #IdiopathicIntracranialHypertension #Depression

I’m scared of the future. I recently had bad palpitations that landed me in the ER. Everything came back normal except my EKG. They suspect POTS or SVT, but with having Idiopathic Intracranial Hypertension POTS is a common diagnosis alongside it. Plus, it’s worse when my pressure is high.

I also meet the criteria for EDS hypermobile, which would explain the IIH and POTS.

This is good news and bad news. I struggle with health anxiety so much, especially since I went so long going to doctor and not being heard. I was told I’m making it up, and it’s just anxiety.

I feared for so long that something catastrophic would happen because doctors didn’t listen to me.

Now I have to wait till 12/6 to see my PCP and go over the POTS and EDS diagnosis. Then what next?

I’m bombarded with constant intrusive thoughts of fear of what’s next for me. Feeling like a failure because I can’t work, or cook or clean properly. Having such high hopes for my education and career. Now, I don’t know what my future looks like. That’s terrifying.

I just want to be okay. Not great and not bad. Not perfect but not suffering. Just okay.

Most common user reactionsMost common user reactionsMost common user reactions 4 reactions 3 comments
Post

Looking for advice (bradycardia)

Recently, (since mid-October) I have been getting some really low heart rate readings. This week it has gotten really bad, and I’m struggling to stay conscious. I swear I’m only a fully awake human for about 4 hours out of the day, usually around this time. I have no idea what’s going on. My two thoughts are 1) maybe I’m aging out of some of my medication??? or 2) my body is DONE with my crappy sleep schedule, and it is knocking me out the only way it knows how!

Have you ever experienced anything like this? What helped? Also, should I be considering going to the hospital??? I never know when things are serious enough to warrant that. Let me know! Any and all advice is welcome!

#POTS #AutonomicDysfunction #Dysautonomia #PosturalOrthostaticTachycardiaSyndrome

(edited)
Most common user reactions 2 reactions 1 comment
Post

I'm new here!

Hi, my name is Dani, and this is my first time trying to create an attractive username. I hope staring at the stars is good. After four years of looking for answers, I was diagnosed recently with fibromyalgia, POTS, and tachycardia. It has been the most challenging journey I have gone through, but somehow, the lessons that I have learned have made my life richer than ever. Before my diagnosis, I was always running through life and trying to accomplish other people's expectations. Now, I have learned to enjoy the little things, reward, even the little accomplishments, and surround myself with healthy relationships, and I’m still learning that it requires courage to ask for help.

Asking for help has been a kind of superpower for me. Doing so allowed me to continue my college studies and work part-time at a job I enjoy. For many months, I didn’t tell my diagnosis to anyone, and I tried to continue with my life as it was, but soon I realized that I needed help. I needed to slow down and take care of myself. Sometimes, this road can feel lonely, but I know deep inside that we are not alone. At some point, I thought I would not be able to continue with my college or job. I needed to take fewer credits for my semester and ask for permission from my job to go to medical appointments.

For many months, I hesitated to be part of a community. I asked myself if I was actually eligible to be part of one because this illness cannot be seen externally most of the time. Still, a friend recently told me that not every disability is visible .So, again, I’m deciding to let go of my fear and ask for support… being part of this amazing community is part of that!

#MightyTogether #AutonomicDysfunction #Fibromyalgia #POTS #InappropriateSinusTachycardia

Most common user reactionsMost common user reactions 30 reactions 9 comments
Post

Mobility Aid Albeism

Just got back from trick-or-treating with my nieces and nephew. I was having a difficult time because it was crowded and I don't do well around a lot of people. I was walking with my mobility aid on one side of the sidewalk. (At this point the sidewalk was much less crowded than the street and I was trying to stay out of people's way and not bump into anyone.) This family walks by and takes up most of the sidewalk so I was struggling to walk on the edge. I said "sorry excuse me," and was trying to politely pass them without bumping into them. One of them said as they passed me "You should just get out of here." It shocked me so bad, I didn't think I heard them right, but I did. I don't know why it surprises me that people can be so mean. #Mobilityaid #Disability #PosturalOrthostaticTachycardiaSyndrome #POTS #AutonomicDysfunction #Spoonie #ChronicIllness #MightyTogether #CheckInWithMe

(edited)
Most common user reactionsMost common user reactionsMost common user reactions 23 reactions 8 comments