Autonomic Dysfunction

Join the Conversation on
Autonomic Dysfunction
5.8K people
0 stories
477 posts
  • About Autonomic Dysfunction
  • Explore Our Newsletters
  • What's New in Autonomic Dysfunction

    Looking for friends to chat with I need more community I lost mine.

    My story is long so I will make it short looking for friends to chat with I don’t care if your 15 to 100 I just love talking to others and encouraging them because it helps take my mind off of me. I love junk journaling, singing , recording music , painting , reading, laying on the couch binging tv (ok this one not by choice but I learned to love it) and talking to others. Hope we can be friends!
    ❤️Your sickness doesn’t define you it’s just the fire that molds you into something even stronger.❤️

    Message and follow me!
    #hobbies #POTS #GeneralizedAnxietyDisorder #AutonomicDysfunction #MentalHealth #Makeup #Music #Junkjournal #crafts #Letsbefriends #Hope #professionalovercomer

    11 reactions

    Becoming a grandmother

    I thought becoming a grandmother would be the most exciting thing in the world. Instead it’s made me extremely depressed because I don’t get to see him. I don’t even get a FaceTime with him. My heart is broken by the way I was treated after he was born. It was during the pandemic. I found out later her Mother was able to hold him. I was not able to hold him until he was 8 weeks old and I had to wear a hazmat suit. Her mother did not. She was able to hold him from day one. My husband and I are a lot older than her parents and we are not as well off financially. My son aloud this to happen and did nothing to stop it. I do not feel anything anymore. I have a brain injury that has gotten worse due to the depression and hurt I suffer with everyday. I don’t feel like a grandmother nor am I treated as one. On my birthday this past October I got a call from both my sons thats it. I waited for a FaceTime from my grandson that never came. I was devastated. They live close by it’s not like it’s out of state. We are not aloud to babysit him. We have offered and they make an excuse. Christmas with Santa Claus not us. Easter bunny not us. Valentine’s Day came and I finally had to say I had a gift and it would not reach him in time. She told me they would plan sometime to come out. They stopped in for 90 minutes sat and looked at their phones. He got his gift and they left. Everytime they leave I am crying and depressed. I hurt my back lifting him to get the mail. I’m still trying to heal my back. That was the last time we have seen or heard from them. We don’t seem to matter to them. I wanted to do something with Santa last year. My son says make it happen!!! I don’t know what he means by that. Then I see they took the train ride with Santa and we were not asked to come along. So if they already did it then why tell us to make it happen. I really have nothing to live for anymore. It’s getting worse and my son is now a stranger to me. The only way to protect my heart from more damage is to pull away. I really don’t know what else to do. I’m not rich Lyme disease took all my money. These last 3 years have been a living hell. Lost my mother , my brother and 6 others to suicide. Plus 22 more. I can’t even work anymore on line.

    5 reactions
    See full photo

    What’s something you have to consistently rely on others for?

    When you live with a disability or have a chronic health condition, sometimes it’s necessary to ask for help. Whether it’s to assist with chores or other everyday activities or errands, relying on others is how the task gets done and thats totally OK, we definitely can relate 🙋.

    What do you have to rely on others for? How does that make you feel?

    P.S. There’s no shame at all in asking for the help you need.

    ❤️ If you’re looking for something Mighty to read on the topic, check out Larissa Martin’s experiences here:

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

    57 reactions 35 comments
    See full photo

    Forgetfulness as a Gift | Tiny Zebra Notes

    Let’s hear it for us awesome #neurodivergents who gift ourselves with surprises because we easily forget! That’s one of many upsides of being someone with frontal lobe and executive function deficit disorder and multi factorial
    #ADHD (inattentive type), I don’t always remember the productive things I’ve done until I stumble across it later on. It makes the stumbling feel less like a distraction and more of a purposeful discovery. What will you accidentally gift yourself today?
    #neurodivergence #Neurodiversity #MentalHealth #executivefunctiondeficitdisorder #PTSD #ObsessiveCompulsiveDisorder #FrontalLobeDeficit #EhlersDanlosSyndrome #InappropriateSinusTachycardia #AutonomicDysfunction #ChronicPain #TinyZebraNotes

    12 reactions 1 comment
    See full photo

    How often do you feel like you know more than your doctor?

    Living with chronic or complex health conditions can sometimes mean needing to explain and express your thoughts, concerns, and knowledge of your diagnosis to anyone and everyone… yes, even to your doctor.

    What’s been your experience? What emotions pop up in those moments when it feels like you’re the expert in the room?

    📚 Want a relevant Mighty read? Check out Tierra Drollinger’s experience in her recent Mighty article here:

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

    30 reactions 13 comments

    Chest Ports

    Do any of you have ports for infusions? I may need to get one soon and I have a few questions: Can you dress normally and still keep it hidden? Does it show through lightweight summer materials? Please no comments telling me I shouldn’t worry about how it looks. I do and that’s my choice. #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #POTS

    2 reactions 2 comments
    See full photo

    How does where you live affect the type of health care you receive?

    Receiving health care and having access to the resources and services you may need can look different depending on where you live. From the number of hospitals to the types of specialist that are available in your area, you may need to travel or seek support elsewhere in order to get the treatment necessary for your care.

    What has been your experience with health care where you live? Have there been any challenges?

    📑 Need a Mighty read on the subject? Here is an insightful article written by Alex Tomlinson:

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

    49 reactions 30 comments
    See full photo

    Prayer for today

    “God, I thought I would feel different by now,
    but new pressures just keep mounting.
    I have been struggling for too long
    to meet each new challenge,
    to scrape up resources,
    to find small comforts,
    to change strategies,
    to dig deep into our reserves,
    to stay positive,
    but I need relief
    and fresh hope
    and a minute to just say,
    I really wish things were easier.

    “We do not know what to do,
    but our eyes are on you.”
    —2 Chronicles 20:12, New International Version

    Just when we thought we could almost be done with this,
    another shoe drops. There are no finish lines.
    We long for the simple joys of times past,
    those everyday pleasures we can barely remember, but still hunger for.
    A great night’s sleep.
    Less financial stress.
    The ease of making future plans.
    The wish that our faith would give us an exemption
    from all that is too painful.

    Blessed are we who look to you, God,
    in the midst of troubles that are too great for us,
    that have gone on far too long.
    Who dare to say,
    now would be a good time for help to come,
    for this to be over, once and for all.
    God, send us help.
    Bring solutions for the desperate,
    protection for the vulnerable,
    comfort for the suffering,
    strength to the caregivers,
    wisdom to those in charge.
    Infuse us with the courage to suffer with hope.
    That our suffering doesn’t go unnoticed by you.
    Sustain us and orient us to the reality in which we now live.
    Help us pace ourselves. Keep us awake
    to what might be done, right now.

    “I will strengthen you and help you;
    I will uphold you with my righteous right hand.”
    —Isaiah 41:10, New International Version

    Kate Bowler and Jessica Richie, The Lives We Actually Have: 100 Blessings for Imperfect Days

    #CRPS #AutonomicDysfunction #Keeponkeepingon

    2 reactions

    Ambulatory wheelchair users and sports. How do you navigate if you need your wheelchair and people asking questions or looking at you?

    I have recently been thinking about getting back to a sport/activity I used to do before my health took a dive for the worse. The thing that I believe keeps me from doing it is the fact that I know I will need my wheelchair. This sport/activity can be done standing(which is the norm),sitting or from a wheelchair. I’m still not confident and maybe still not comfortable going out in my wheelchair when it comes to the day-to-day stuff. So I’m very anxious and nervous about possibly going back to the sport/activity. They know that I had health issues before, but as the years have gone by, I have seen that more young people have joined the club, which only intensifies my nervous about going back.

    I know that I don’t owe them any explanation for why I would use my wheelchair, but I also feel maybe that I should…but I don’t know how to go about explaining that I have POTS and all that.

    I guess my question is, how do you go about being an ambulatory wheelchair user and sports/activities were you probably will be looked at or that people will ask questions?

    #PosturalOrthostaticTachycardiaSyndrome #AutonomicDysfunction #ChronicIlless #Sport

    See full photo

    POTS Memes Y'all!

    I'm so jazzed! I've had so much fun making memes during this adventure, and I'm so glad I get to share them!

    Here's the link!

    #PosturalOrthostaticTachycardiaSyndrome #Dysautonomia #AutonomicDysfunction #LivingWithPOTS #POTS #OrthostaticHypotension #ChronicIllness #Syncope #laughsoyoudontcry

    6 reactions