Dystonia

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    So tired

    So tired of not being heard, of the effects of my illness not being understood, of being in the tiny percentage of the rarest form of a rare illness, of accumulating comorbidities.
    I've just turned 55 and feel so much older. Am struggling to express my distress to even my wife and how totally exhausted I am just trying to cope with the day to day - especially with the added pain of a torn rotator cuff that I'm waiting on surgery for. I am often called strong and resilient because I have been through a lot but it would be so nice not to have to be strong for a while
    #Dystonia #IrritableBowelSyndromeIBS #Fibromyalgia

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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

    1 comment
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    I’m new here!

    Hi, my name is lucie. I'm here because I live with RSD, Dystonia and gastric issues (tbc diagnosis). looking to connect with other people who are living with long term health problems

    #MightyTogether #Dystonia

    3 comments
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    I’m new here!

    Hi, my name is keelan89. I'm here because my son has Quadreplegic Cerebral Palsy & Dystonia & I just want to connect with parents in a similar situation

    #MightyTogether

    4 comments
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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

    14 comments
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    How do you bring yourself to dill out an end of life packet?

    I got mine in the mail yesterday just in case I turn critical before I can get to an out of state hospital with a specialist…. I got COVID in May and developed QT Long Syndrome so all psych meds stopped, except Elavil. June I had a stroke that left me weak on one side, not able to write or speak properly, or even more around well. Few weeks later I had a Dystonia episode that almost killed me. Elavil was stopped. My Gastroparesis was continually getting worse since COVID and because my heart meds are not option at this point. I now I have a PEG tube but still pleasure eat some. In two weeks I will be getting a PEG-J to completely by pass my stomach. I am in the hospital more than I am home so it feels like it. All I do is sleep. Life is hard and a long life just isn’t the cards anymore. My end of life packet came in the mail yesterday. Five Wishes. This is my PARENTS know my final wishes and planning a memorial service. It seems so backwards. I am only 33…. How did I reach this point? What did I do or not do? How in the world can I fix this when my state won’t even help me?! No idea how long I have to wait for Houston but my body is giving up and I am afraid I won’t make it to that appt. But I cannot bring myself to fill out this packet. Feels like giving up but my parents need to know these things….. #Gastroparesis #FeedingTube #CriticalCare #scared #how #why #doesitgetbetter #endoflife #longcovid #Stroke #LongQTsyndrome #HeartHealth #MajorDepression #Schizophrenia #Schizophrenic #Anxiety #PTSD #MedicalPtsd

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    Holy **** I'm sick

    Does it ever just hit you out of left field that feeling "oh **** I am actually way worse then I realized!" Like I know I have been sick and my abilities are limited. It just hits me at random times how bad it actually is.

    So like today I had to do an assessment for my Physical therapist and for an upcoming appointment with a new Dr and say how well I was doing balance wise and ability wise. The answers were not great. Along with getting some positive test results back that my Dr got back and scheduled an appointment that night so somethings up...

    Then I started thinking about if I could get a job cus my parents where joking about my dad working at the new hobby lobby that just opened and realized I physically couldn't handle working at all maybe 2 hours a week max. No job would hire me at that and I would require acomidations so no way am I qualified for anything. As a young adult you want to work and do things on your own and realizing you can't because your body limits you so much is frustrating.

    None of this information is new to me on the contrary I have been dealing with the decline of my independence since I was 17 (3 years now). It just hits me at different times and I go "oh ****" when you go from working full time and graduating high-school to being in a wheelchair struggling to speak or do basic tasks and no one knows why. The grief of the life you lost just hits at random moments. Most days I am ok and try to stick to my homework of pt, ot, cognitive, and speech therapy and if I have the energy I work on my comics or art if I don't, I don't and I go rest. I forget how much I have lost and how bad my body is.

    Even with the diagnosises I have done explain all my symptoms and what is going on. The continuation of decline is frustrating. The constant questioning of if today will actually be better then the last but telling myself that tomorrow might be.

    But man are those "oh ****" moments hard.

    #oh **** #tics #nurologicaldisorders #FunctionalNeurologicalDisorder #Tourettes #dyskinesia #Dystonia

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    What to do for my hand that's clamped shut?

    My left hand has locked up and I can't really use it much and my muscles in my arm and neck keep jerking uncomfortably. I'm thinking of getting some kind of hand splint to keep my hand open so if won't clamp painfully shut. Anyone else have that issue? #Dystonia #FunctionalNeurologicalDisorder

    2 comments