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    #1

    So I’m drunk

    I had my second covid vaccine last night (yay for MND, I had it early). As I was walking past the queue a woman said ‘clearly queue jumping’. A bloke then shut her up by remarking ‘there must be an underlying health reasons. I was gobsmacked. What a bitch (and that’s being polite).
    So now I’ve had time to overthink responses and let it go. I’m just angry and recognise that I’m different than I was pre-diagnosis. I’m VERY lucky as my MND is slow but I still feel so (I don’t have the words). Low, lost, robbed? I have to be strong for my family and friends, but I also want to scream from a hilltop from a very feral place.
    I’m venting but know nowhere else to do so (a few whiskeys have helped me open up). I am struggling with the change in my independence and want to rail against it. Sorry if this isn’t the place.
    Anyone awake this late; I’d appreciate the input 😊
    Tags: None
    • 👍 3
    #2
    Vent away and feel good about it!

    I know a song about it! ...

    the fall 2x4 wonderful and frightening world
    https://www.youtube.com/watch?v=3h4AOgNJPXE
    Track 2 from the a side of the album In my view a classic,recorded from my personnel vinyl collection


    Hit her on the head...
    With a 2 by 4...

    Hit her on the head...
    With a 2 by 4...
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      #3
      I read your post early this morning and I have to say I fully support you. If you can't have a good shout here then where would you do it?

      some ignorant people just don't know when to keep their mouths shut so I wouldn't even give them the chance to intrude on my day. Saying that it would have been nice to have told her but she probably wouldn't even know what mnd is.

      enjoy the alcohol and have a rant it can only be good for you to get it all out.

      cheers 😊
      love and hugs Denise xxx
      when i can think of something profound i will update this.
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        #4
        Aw no, that's horrible. Sending you a virtual hug if that's ok. There are a lot of, sadly, ignorant folks out there.

        A neighbour I used to know with a terminal diagnosis of cancer, had a similar, annoying experience. Only, in his case, he had parked in a disabled spot, and was going into a supermarket. Someone made a snidey comment along the lines of people using the spot out of laziness, when it was meant for someone who was 'really disabled'.

        In his case, however, he marched straight up to them, looked them right in the eye, and told them in no uncertain terms that he had terminal cancer, in various parts of his body, so he was just as entitled to a blue badge as anyone less mobile, whilst he was still living. And anything that saved him the precious time he had left, he was going to use. Needless to say, leaving the person speechless, apologetic and embarrassed, whilst a crowd were watching. Good for him!

        He may have thrown in a bit of 'old Saxon' language at the time. Ahem. Sending you a virtual wet cloth in case of hangover....
        Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

        Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png
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          #5
          I think we all can understand the desire for the oblivion that may come with drink - if we're still able
          • 👍 1

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            #6
            I might well have been awake at this time, but didn't see your message, sorry. I find mnd can undermine my sense of self, especially out amongst strangers and I am feeling particularly vulnerable . I guess people with hidden disabilities have always suffered from people not recognising their difficulties, if you're not in a wheelchair you are not disabled. As if we didn't have enough to cope with. Good place here to ramp, we know where you're coming from! Hope you feel okay this morning. Love, Heather x
            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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              #7
              A little bit of what you fancy does you good. Out of interest are you a ice, water or straight whiskey drinking gal 🤔
              • 👍 1

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                #8
                I'm guessing straight from the bottle 😄🙄😃
                when i can think of something profound i will update this.
                • 👍 1

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                  #9
                  For some reason I am singing a John Lee Hooker song to myself: 'One whiskey, one bourbon, and one beer....' !
                  Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

                  Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png
                  • 👍 1

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                    #10
                    And it's not even 11am 😄
                    when i can think of something profound i will update this.
                    • 👍 1

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                      #11
                      Morning all. Thanks so much for your kind and funny comments. Feeling a little delicate this morning but more positive 😆
                      • 👍 2

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                        #12
                        This is what friends can do. 😘

                        Denise xxx
                        when i can think of something profound i will update this.
                        • 👍 1

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                          #13
                          You should have offered to do HER vaccination for her and shoved it where the sun dunt shine
                          Husband Albert diagnosed PMA Feb 21
                          • 👍 2

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                            #14
                            CW100 Good morning, or rather good afternoon - I shall whisper as you're a tad delicate 🤭

                            You are definitely in the right place to rant about the actions of walking, talking, eating, dextrous folk - if anyone truly understands the hand you've been dealt, it is your comrades in arms.

                            Rant away - you don't even need to have whiskey on board 😉 PS. I'm happy to see you drink whiskey, not whisky 🙂

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user                            .
                            ​
                            • 👍 2

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                              #15
                              I don't drink and, fortunately, am permanently on anti-depressants, so my mood is good, and has been good all the way through. If the disease gets to being much more noticeable, i have no idea how i will feel. I am just hugely greatful that my progress is slow. I use a Tens machine on my hands, had acupunture for 18 sessions, and do exercises given to me by the occupational therapist - the most useful person i have spoken to yet!

                              I know the diagnosis can be terrifying, especially as, the first time i looked up the MND association page, it said we normally die within 3 to 5 years of diagnosis! That was the day i got very emotional! But now i know we can survive much longer. Lunch time now - see you all later. I will upload a profile photo too,

                              Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.
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