Autonomic Dysfunction

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Lost

When a saying speaks the truth.

No longer feeling like myself. The once “educated , ambitious, hardworking, tireless” person I was has become so small.

Keeps trying to swim faster and harder to keep up. Drowning and feeling wiped out trying to keep my head above water. How long can I keep treading at this pace to keep up with my day to day.

Don’t want to give in, don’t want to let it win. I won’t and can’t let this consume me. I need to find me again.

The one who had a smile on her face that was genuine and not forced. The carefree soul that was living at one point has become nothing more than text on a page of memories .

Has anyone seen me ?! The real me ?! Not this empty auto pilot husk I have become floating .

#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #Anxiety #ChronicFatigue #Depression

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Perspective

Discussion of the day I had today. Why do you always say “I’m fine” when your not.

My answer was “it doesn’t go away, this is for life. So “I’m fine” sometimes is all I can muster.

It’s easier than the long winded conversation of explaining what’s wrong and have you done this or tried this.

When I have hit my limits, that’s when I am un fine . I will tell you then because I am doing everything in my power not to just keel over.

I don’t want to be skirted around and treated like egg shells. I just want to be treated like a human being. I don’t want the tippy toes or the looks you see displayed across peoples face, even when they try to hide it. Then it just gets awkward .They think they are helping and making it better but in reality it just exhausts me and frustrates me.

Why can’t the conversation just end with “I’m fine” and move onto another conversation.

#MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #Anxiety #Depression #ChronicPain

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Shadow

I read a article today about a celebrity that has MS and advocates for it. There was a quote in the article that said “I don’t enjoy living anymore” that really spoke to me. Not in the sense of stopping life but in the sense I feel stuck deflated.

I don’t feel the passion or the drive to live. I’m not feeling love for myself what I do where I am.

I just exist and go through the motions. I feel hollow like a shadow filled with so much empty energy. Energy that just keeps me taking one step after the other . I don’t enjoy it . I don’t enjoy my day to day anymore. I don’t enjoy me. I don’t enjoy activities. I don’t ….

#MixedConnectiveTissueDiseaseMCTD #MentalHealth #ChronicFatigue #Depression #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis

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Yes ! Yes ! Yes !

So this is the second or third time I have managed doing this sense initially bruising and tearing my rib muscles . Might I add they still haven’t full healed and that initially happened in January 2024 . I swear my left side of my body is shutting down but that’s a different convo . I sneezed and coughed at the same time aka my body violently jerked and guess what strained or ripped it again. Needless to say I wept on my way to work and caught myself silently weeping in my cubical and I said screw it im taking a half day. I have taken the least amount of days out of the office people and constantly cover them . So I text my boss sense he’s being closed doors letting him know what’s going on. Being to the point but vague because I don’t want to disclose every little thing wrong with me I would be stuck there all day. I have a doctors note etc covering me and requesting I be aloud to work from home when having bad flare up days. Which to top it off it was. He waved me to his office and gave me that raised eye brow judging look. “You doing okay ? You a look alright” so I use paid personal time off to excuse myself and still follow along with emails while I’m out trying to recoup and heal the best I can. I hate feeling judged and well you look fine to me comments etc . I’m also 32 and people are like your too young to have problems . That is not a compliment ! Can I just speak my truth on it . It does not make me feel better if anything just triggers annoyance . #MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #MentalHealth #ChronicFatigue #Depression #RaynaudsPhenomenon #RheumatoidArthritis

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Poke Prod Poke

I am so over being constantly monitored and feeling like a mystery science project.

Constant labs and test. Scheduling . Worry. Stress.

No answers no results okay we are just monitoring progression.

I question why I even go. Wishing I never went to the doctor in the first place. Feel like I never get news let alone good news. Always well your just gonna have to monitor it and we will keep guessing to see if anything helps your symptoms but we really don’t know squat about it.

Don’t forget your labs. Got test this week. Make it work with work. Sitting in doctors office freezing making symptoms worse because I was told I have to be here.

What if I just stopped. Stopped labs. Stopped medication. Just enjoy the time I have and live the best I can vs adding all this worry. If it’s meant to be it’s meant to be.
Conflict. Knowing I won’t do it. Knowing I’ll keep going . Just feeling defeated. #MixedConnectiveTissueDiseaseMCTD #AutonomicDysfunction #RaynaudsPhenomenon #RheumatoidArthritis #MentalHealth #Anxiety #ChronicFatigue #Depression

3 reactions 4 comments
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Black & Blue when I battle you

Constantly at a inner struggle with myself. I always have been the go to person, the one that holds everyone else up, strong independent.

I know asking for help is okay. For me it is easier said than done . It definitely is not on my strong suite let alone add in my patience and it’s a whole mess.

Feel like I come out of a batting ring daily from the time I wake up to the time I go to sleep. Trying to figure out we’re I can make those baby steps on letting people help me. End up just doing it myself. Paying for it later . Don’t want to be a burden.

This especially goes for my significant other he is the hardest one I have issues asking for help from. He has seen me at my “regular” performing state and now I just feel like I’m in the way more than anything.

He never outwardly expresses it or really does anything to make me feel that way. It’s just my brain. The one thing I can appreciate is that he is the one person and even I catch him doing it sometimes. He treats me like me. He doesn’t walk on egg shells he doesn’t coddle me (even though I sometimes wish he did more) but he makes me feel strong even when I feel week. He knows when to push me and when it’s a “hey why don’t you go to your zen garden and relax” type of day.

Just emotionally feeling broken and bruised physically my body is screaming silently yet it’s so loud. I find myself screaming alot in my head. Not sure if that’s a good thing.

I think why me ?! Then again I think why not me?! The universe wouldn’t give me something I couldn’t handle. This is just another mountain to overcome. Yet there is no overcoming it . There is no getting better or a magic pill to cure me.

I just had a birthday over the weekend. By far just made me internally panic more. How will I be in 2 5 10 years from now. Will the people I have in my life still be there or will they have floated down the river of life. Will he still love me . Why if I become to much. I don’t want to take away others peoples way of living . Just alot of “ahhhhhhhhhh”

#AutonomicDysfunction #MixedConnectiveTissueDiseaseMCTD #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #Anxiety #Depression

10 reactions 6 comments
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Scrambled

Mentally and physically feeling scrambled. Can’t seem to settle my mind from running rampet let alone trying to focus on a thought and not feeling completely drained when doing so.

Body has been kicking my behind to say the least. Doing everything in my power to stay up right and semi functioning.

Disconnecting. Spends to much energy. Falling in on myself in the abyss quite safe no chaos.

Struggling to even formulate my thoughts lately.

#MixedConnectiveTissueDiseaseMCTD #Depression #MentalHealth #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction

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Little things

Little things that make your life a little bit easier . Weather it’s discovering a new method to do something. I’m a strong fan of work smarter not harder and implementing that on a regular. Physically , work, life the list could go on.

I’m not promoting nor have I been asked to post this. I cropped the best I could . The arthritis cap though , come on pharmaceuticals jump on this trend the majority of your clients are in need of some sort of medication . I know I take 16+ a day and sometime contemplate putting off filling my weekly medication holders. Just because my hands are hurting and not working with me to handle different size pills and or open 16 !!! Caps !!! That are not necessarily arthritis friendly. Just saying this would save so much time and energy .

What are some “the little things” that work for you or discovered read about heard from a friend of a friend expierenced etc

#MentalHealth #RheumatoidArthritis #AutonomicDysfunction #RaynaudsPhenomenon #Depression #MixedConnectiveTissueDiseaseMCTD #ChronicFatigue

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#MentalHealth #MixedConnectiveTissueDiseaseMCTD #RaynaudsPhenomenon #RheumatoidArthritis #AutonomicDysfunction #Anxiety

Needing to give myself a little extra grace today.

Pain day is at a blackout point trying to manage. Holding out on pain medication as long as I can. As the tears roll down my face trying to see if I can make it through a work day in office.

Frustrated. As I feel pain my body tightens trying to hold everything together causing the pain to flare more. Why can’t my body do what it’s supposed to

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