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    Living in a home with so many invisible illnesses.

    In my home we have a shopping list of invisible illnesses, and they are nearly impossible to manage all at once.
    The Ringleader (me) suffers from some sort of metabolic disorder that is going undiagnosed, an ongoing epileptic disorder that is going undiagnosed, C-PTSD, PMDD, Social Anxiety, Bi-Polar, Borderline Personality Disorder, Asthma, Migraines, joint pain, bulging disc's in the back, Auditory Processing Disorder, and Executive Function Disorder
    The Circus Bear (my husband) has C-PTSD, DID, Anxiety, undiagnosed arthritic joint pain in knees, right elbow, and back, Seasonal Affective Disorder, and withdraws from society as a response to Suicidal ideation, Post-Traumatic Arthritis.
    The Unicorn (daughter) has C-PTSD, fear of abandonment, Generalized Anxiety, Clinical Depression with self harm, Anorexia, and a profound sense of justice/injustice, if you betray her, are a hypocrit, or break a promise, you are dead to her.
    The Fire Drake and Ice Dragon (son) is Autistic, has severe suicidal depression, especially when bullied at school, Social Anxiety, Executive Function Disorder, C-PTSD, all negative emotions start as anger
    Finally, The Weeping Willow Dryad (mom) C-PTSD, Has endured 2 back surgeries that failed, chronic pain, Agoraphobia, Skleroderma, Raynauds, Rheumatoid Arthritis in her hands, Osteoarthritis in back and knees, Social Anxiety, Clinical Depression, and an emotional reactive disorder that has gone undiagnosed.
    As Ringleader I am in charge of making sure everyone takes their medications, at least tries to get to some sort of therapy, drive everyone to appointments, physical and mental. Know everyone's favorite foods, cycles of physical and emotional needs, understand who is feeling ill when. Get all meds for everyone from the pharmacy. Attend 90% of appointments. Get food for everyone, that they like. Listen to the complaints of every single one of them.
    When I finally speak about the negative behavior that is effecting people in the household, I get attitude.
    From screaming, to blowing the comment out of proportion.
    If I say "please stop answering people for me"
    I get "I will never talk again, you never have to hear my voice ever again"
    If I schedule a much needed test on the wrong day, I get guilty about it.
    If I say "I would have done _____"
    I am accused of telling people how they did it wrong.
    I am trying to manage my home and the people in it.
    All I really want to do is run away.
    I dream of tropical places, and travel, and being responsible only for myself.
    I feel like I am holding the whole place together, and without me no one will be able to function. This has been proven many times.
    I am so tired, so empty, burned out.
    The light I have always had is getting dimmer and dimmer, and I lost so many people because I had to protect myself from them in order to manage my home.
    I know this is all a ramble...rant, maybe none of it makes sense.
    I just needed to let it out somewhere.
    #ComplexPosttraumaticStressDisorder #BipolarDepression #ChronicDepression #Anorexia #BorderlinePersonalityDisorder #FearOfAbandonment #Autism #Agoraphobia #SocialAnxiety #ExecutiveFunctionDisorder #DissociativeIdentityDisorder #PMDD #TemporalLobeEpilepsy #Epilepsy #SeasonalAffectiveDisorder #EatingDisorders #GeneralizedAnxietyDisorder #Arthritis #Skleroderma #RaynaudsDisease #ChronicHeadaches #ChronicMigraines #InvisibleIllness

    15 reactions 2 comments
    Post

    Time gets away from you

    About two weeks ago, I wanted to do a post a day, to get back into the feel of writing and processing and just dealing with this lovely process of living with a chronic illness.

    Then, I had a bad Friday, and I long weekend, fatigue hit hard and then an appt , then another appt….

    Then, just CRASH…

    All the best intentions, gone.

    Now, I’m slowly coming up for air and it’s like …. Wow, it’s been almost 2 weeks.

    It’s so easy to lose time, and then when you’re ready to start again … you feel disappointed…

    Starting over…
    And over
    And over

    Sooo

    Here we go

    Starting over

    #Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression
    #TraumaticBrainInjury #TBI
    #PostconcussionSyndrome
    #AnkylosingSpondylitis #ADHD
    #ChronicPain #
    #Endometriosis #PMDD
    #COVID19 #ChronicFatigue
    #DiabetesType2

    4 reactions 1 comment
    Post

    Thinking on Thursday… 🤔😄

    I think I’m doing pretty good for the one post a day. I have almost made it a week. 😂✍️

    This is progress.

    I have a bunch of appts today, so I am preparing to be poked and prodded and make “nice conversation” 😂😂

    It’s not the best day though, fatigue is high and I would really rather be in bed, because every moment will be a tiny mountain I have to climb.

    Dealing with one chronic illness is frustrating enough, but when they start to combine on any given day, that’s when your body becomes your own personal torture chamber.

    Today, it’s joint pain plus the PMDD and the spine pain… and with the PMDD there is the endometriosis… and there is always the foundation of it all , the Asthma…

    You have to take it all in, balance it and then try to present yourself to the world as

    “Normal”

    Life , right..🤔😂

    I look forward to the adventure of today. 🥰

    ##Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI
    #PostconcussionSyndrome
    #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2

    2 reactions 3 comments
    Post

    Well, Wednesday ✍️🤔

    “What do you do all day?”

    I’m a little late but I’m holding strong with my post a day …

    Fatigue is definitely hitting hard today… I’m still hoping to be a little productive…

    An old friend asked me that question, and I answered her once, I told her it depends on the day.

    But, then she was like but I’m just wondering how do you spend your days….

    That question has been haunting me like the ghost of a life gone past…

    Because as a severe asthmatic just coming out of two months of dealing with the side effects of having CoVid….

    “Nothing”

    is really , surviving… struggling to hold on to the little bit of breath and life that you have…

    Laying in bed and distracting yourself from the pain and the struggle of breathing and pain…. Is fighting for your life….

    “Be still”

    is really being a warrior, holding on to all the Hope you have left and get your “One more day”

    “Nothing”

    … when so many things are broken inside of you that taking a full shower without struggling to breathe or stand up straight is cause for celebration..

    But,

    When you’re used to multitasking, and being in charged of a business or people and getting things done… When you’re use to creating things that did not exist before your mind said, “Let there be, and it was…”

    “Nothing”

    Does not feel like an acceptable answer…

    It is a text message still left on “Read”, the tiny bubbles keep showing up and disappearing…

    I’m still looking for the right answer to that question… ✍️✍️

    #Asthma #Arthritis #ChronicIlless #Jointpain #ChronicDepression #TraumaticBrainInjury #TBI #PostconcussionSyndrome #AnkylosingSpondylitis #ADHD #ChronicPain #Endometriosis #PMDD #COVID19 #ChronicFatigue #DiabetesType2

    22 reactions 4 comments
    Post

    Baby steps are still steps 🥰

    I made some progress.

    More than last week.

    I have to give myself that✍️

    Sometimes, it’s hard to celebrate the small steps because you have such a big victory in mind.

    I’m trying to be kinder to myself.

    I cleaned a bit yesterday. I’m still tackling the laundry, I have to fold and put them away.

    Today, I made a small list of tiny goals.

    Take meds
    Take breathing treatment
    Brush teeth
    Make coffee
    Eat breakfast
    Wash face
    Fold clothes
    Push clothes away
    Empty trash
    Take out trash
    Sweep floor

    Etc…

    This is how make my goal list so that I give myself credit for all of my efforts.

    This is also progress, I wanted to challenge myself to write once a day. Practicing something that was taken from me because of a head injury….

    I started on Sat 🥰… So far I have made it to Tuesday..

    #asthma #arthritis #ChronicIlless #jointpain #ChronicDepression #traumaticbraininjury #postconcussionsyndrome #ankylosingspondylitis #ADHD #ChronicPain #Endometriosis #DiabetesType2 #PMDD #Migraine #ChronicFatigue

    11 reactions 5 comments
    Post

    #PMDD

    I have functioning PMDD. Might also be due to masking a lot cuz I’m also autistic and am used to hiding all my less fun “socially” appropriate quirks… but when I get home, I’m a totally different person. I lash out, sleep all the time, and cry for no reason. Sometimes I can actually feel the rage starting to come up from like my stomach and it’s kinda scary. I also have SAD so this time of year things are pretty bad. :( Oh, and I am bloated af and don’t know if it’s PMS or IBS or both. Sigh.

    2 reactions
    Post

    Learning about myself, again.

    I have been looking back at all of my diagnoses. And they explain why I am the way that I am because of thought patterns and mood disorders. I am fascinated at how many problems I have and they explain why I have a more difficult time functioning. Every day is difficult because A) I have to have everything in its proper place, B) I am dependent on others for reassurance, safety, and to help care for myself, C) I am avoidant of meeting new people and new experiences, D) I have a constant depression that is being controlled by sertraline, E) I have mood swings which are controlled by Abilify and F) I have PMDD which is controlled by Depoprovera injections. It’s a difficult road having all these problems. I managed to change a negative thought loop which has made me feel better and more positive so that is a win. Cognitive behavioral therapy and my counselor are a big help with changing my mind and coping with my problems.

    #obsessivecompulsivetraits #severesocialanxiety #PersistentDepressiveDisorder
    #clusterCpersonalitydisorder
    #Schizophrenia
    #SchizoaffectiveDisorder #PMDD
    #CognitiveBehavioralTherapy

    13 reactions 3 comments
    Post

    #MentalHealth #BorderlinePersonalityDisorder
    #physicalhealth
    #Diabetes
    #PMDD
    It's been a very rough month and the last few days have been horrible.
    I am tired of being on the roller coaster

    8 reactions 3 comments
    Post

    One of those days #PMDD #ObsessiveCompulsiveDisorder

    This is one of those days where the intense fear and anxiety just feel like too much to live through. There’s such a lack of knowledge and assistance from drs about pmdd that I feel like there’s no help for me. I continue to try and help myself the best I can but it gets so overwhelming doing constant research and trying things while feeling like there’s very little support out there.

    8 reactions 4 comments