Seizures

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    How Are You Feeling Today?

    I’ve had a decent day energy wise, which is great and I’m hopeful that I’ll be able to replicate the combination of meds and supps tomorrow to produce the same results. In this sense—living with chronic illness is like an ongoing experiment on the self, but sadly there is no Nobel Prize for hacking survival.

    The little guy on the other hand had a seizure for the first time in months, and he always feels sorry for himself for a good half hour before he’s back to his usual perky self. Seizures also mean that all belly rubs administered that day get reset to zero so that’s my day and evening plans sorted ✔️

    Tell me how your day is going / has been… good day, bad day, or something in between?

    #MightyPets #Epilepsy #Seizures #MyalgicEncephalomyelitis #ChronicFatigue #CheckInWithMe

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    I'm new here!

    Hi, my name is JohnChatzis. I'm here because I can listen to anything that happened to you. I have helped people in the past because I had a dark past with dark thoughts that almost made me end my life. I still have thoughts to share though. I am not a specialist. I have still things inside me that bother me and I feel lonely. I can help you help me and you can help me help you. Love

    #MightyTogether #DerealizationDisorder #DepersonalizationDisorder #Depression #ComplexPosttraumaticStressDisorder #PanicDisorder #Suicide #Seizures #PTSD #Depersonalization #Derealization #Meaning #meaningoflife #exist #existentialism

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    My recent new experience following a row of functional seizures. How's everyone else doing!?

    Tuesday I fell and had three seizures in a row. Luckily I didn’t do any damage that I’ve noticed, apart from a slight tender spot on my head.
    With the help of my sister I crawled into my room and got into bed. Later that day I had another seizure. Came out of it as usual, talking and coherent.

    Maybe an hour later, I was watching TV and then realised I couldn’t move. My legs and arms felt disconnected from me.
    I’ve experienced leg paralysis before but not being able to move my arms was new. The more I looked at them and tried to get them to move, the heavier they felt.

    My sister came up to see if I needed anything and then I realised I couldn’t speak either and all I could move was my eyes. Carrie got Mum and they came up with a way I could communicate with them. They’d ask yes and no questions and put one thumb up and the other down, then I’d look at the one stating my answer.

    We decided not to ring 111 as I wasn’t in a high level of pain, I gathered this was a repercussion of the seizures and it would likely be a waste of everyone’s time as we doubted there was much they could do, unless it persisted.

    It’s hard not to feel like a burden at times and this was one of those times when that feeling hit hard. My sister, Carrie, gave me my dinner and a drink. Mum and Dad were lifting me to get me into a comfortable position, lifting me on and off the commode next to my bed, Mum helped me change and Dad put tablets in my mouth followed by a straw for water.

    It was a horrible feeling. It was painful and embarrassing.

    Wednesday was a bit of a blur. Mum fed me my breakfast. She handled an important telephone appointment from London for me and again, somehow on her own, helped me on and off the commode. That afternoon I got the use of my hands back. They were cramped up most the time but I could pick up my own food and bottle of drink by the evening.

    Today (Thursday) I’ve got much more movement in my arms, though it’s taken me a ridiculous amount of time and brain power to write this. My legs are taking my weight for a few seconds and I’m getting a couple of words together. You really do appreciate things when you haven’t had them for awhile. I’m so lucky the main symptoms only lasted 12 hours. Not being able to use my hands was very worrying and I’m so grateful that didn’t last long.

    I’m not sure why it happened. What was different about the seizures or that day, or even the days leading up to it. I find with FND searching for answers often isn’t worth the thought, because I’ll come up with loads of possible reasons but never one obvious reason.

    I’m still frustrated by the pain in my spine and the effort of talking but I feel lucky to be recovering from whatever just happened to me and re-charging my batteries.

    I am grateful that today I managed to do some crafts and I’m grateful for being able to write this.

    #FunctionalNeurologicalDisorder #Seizures #functionalseizure #Dystonia #ChronicPain

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    I just wish people wouldn’t blow me off. Or act like my feelings are too big. Or get so uncomfortable when I try express what I am going through that they get off the phone or rush the conversation. I get it’s uncomfortable, unpleasant, scary, taboo. Whatever word you want. But it is happening and it is happening to me. I need my people. They act like they can’t handle it but what about me? They may say sound selfish. But sorry your feelings are uncomfortable but I am planning my funeral so my parents know my wishes should that happen. Like get a backbone and be there!

    Friend: some people can’t handle death… they can’t comprehend it.

    I can’t either so it is frustrating when trying to process and people are like I don’t this well. Well **** you! I need my people. That is my biggest fear about dying. Not having my people, being without my twin, who will comfort mom who is having a nervous break down, who will take care of dad while he is aging, who will be there to hug me in the darkness? And the darkness isn’t here yet and I am already alone…

    #gastroparsis #COVID #longcovid #longhauler #Stroke #Seizures #Dystonia #scared #darkness #TooBig #valid #IamVaild #Twin #DoNoLeaveMe #help

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    Long covid is killing me….

    I just wish people wouldn’t blow me off. Or act like my feelings are too big. Or get so uncomfortable when I try express what I am going through that they get off the phone or rush the conversation. I get it’s uncomfortable, unpleasant, scary, taboo. Whatever word you want. But it is happening and it is happening to me. I need my people. They act like they can’t handle it but what about me? They may say sound selfish. But sorry your feelings are uncomfortable but I am planning my funeral so my parents know my wishes should that happen. Like get a backbone and be there!

    Friend: some people can’t handle death… they can’t comprehend it.

    I can’t either so it is frustrating when trying to process and people are like I don’t this well. Well fuck you! I need my people. That is my biggest fear about dying. Not having my people, being without my twin, who will comfort mom who is having a nervous break down, who will take care of dad while he is aging, who will be there to hug me in the darkness? And the darkness isn’t here yet and I am already alone…

    #Gastroperasis #COVID #longcovid #longhauler #Stroke #Dystonia #Seizures #tubie #PegTube #StarvingToDeath #IronDisorder #ImmuneDeficient #Death #FinalWishes #darkness #BigFeelings #TooBig #iamvalid #valid #LeftBehind #DoNoLeave #Twin

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    Let's get talking!

    How much of your day do you spend thinking about the disorder you live with?

    Somedays it's hard not to spend your whole day focused on the disorder. That's what I find anyway.

    Today I had 5 #Seizures and the #fatique hit me really hard. So hard, I had to have my underwear cut off to use the toilet! And then almost fell of the toilet!

    So today, I've spent alot of time thinking about #FunctionalNeurologicalDisorder
    It's been hard not to.

    But on good days, I try to focus my energy on something else. Like my family, friends, creative writing, drawing, raising awareness. Anything.

    The disorder you live with doesn't own you. No matter how hard that is to believe at times. Your personality is who you are, spend your time being you.

    I would love to hear your thoughts on this if you're comfortable enough to share.

    #ChronicIllness
    #ChronicPain