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    Anti-social

    Hello to you all. I just feel like sharing with my trusted fellow sufferers, how I am feeling right now. I haven’t posted for a while but do keep up with the forum regularly.
    The thing is I fear I’m becoming unsociable. I have always got on well with my friends and family, and as a teacher, and then social worker in my latter years, everything I’ve done has revolved around “people”. However, as my MND progresses I find myself dreading the company of anyone other than my husband, children and grandchildren. They know me well so are supportive.
    However, now that I can no longer speak, eat or drink, Things have drastically changed. Apart from the inability to speak, the use of engagement and humour are no longer possible. My responses to people using Predictable are slow and before I know it I’m really struggling to keep up with the conversation, so I give up. I know that’s not the best thing to do but it’s so much effort. My personality has got lost along the way. I feel like an empty vessel.
    My husband Chris has tried to persuade me to go out in the wheelchair with him and the dog this morning......the weather is very springlike, but I dread meeting people we know, as it makes me feel so awkward and incompetent.
    Thankyou for reading this. I just wonder if this is a common feeling among we “special people” .
    😞😟😉. Love, Lizzie

    #2
    Oh lizzie
    I could give you such a big hug. You really should go out and walk your dog. Dont worry if you don't want to respond to anyone. Find most people are rude anyway and ignore each other. Just get out there. Do what you want to do.

    My husband has mnd and ftd. We sat along the seafront and he insisted on saying hello to everyone. No one got away. It was embarrassing, funny he got everyone laughing. Certainly cheered me up.

    Just do your best. I'm sure your family and friends will understand but don't push everyone away.

    Lots of love and hugs
    Denise xxx
    when i can think of something profound i will update this.

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      #3
      Hi Lizzie. I’m not in your situation yet but I can absolutely relate to how you feel. I liken to being in a crowded room but drifting towards the edge as the conversations go on and you feel more and more excluded. It’s important I think to focus on what you are comfortable with rather than what others might think is good for you. It’s tough enough as it is without that added pressure. Certainly don’t label yourself as unsociable. I was quite worried about using my chair and meeting people I knew but I’ like going out so I thought I’ll do what I like. Rather a convoluted way of saying you not alone feeling like this and you can always keep in touch through social media and I’m sure you’ve got lots of friends here.

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        #4
        Oh Lizzie I can completely relate to your post. In the early stages after Ann’s diagnosis I said to her that it would be easy for us to withdraw into our own world but I couldn’t allow that to happen. Well that was easy for me to say but the reality was over time that’s exactly what happened. She was fine if we were out where she was not known but wouldn’t want to be around anyone at home other than the kids and grandchildren. We were fortunate to be able to spend a good deal of time in the early to mid stages away in Spain where she would happily buzz up and down the prom in her power chair.

        in the end as Tony says we decided to do what Ann was comfortable with which was use social media for her to have a laugh with the kids.

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          #5
          I completely agree. I am a mole and I live in a hole z🕳️😂🤗😍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Hi Lizzie, I could have written your post. I have had the same thoughts this week. My speech is now so poor that I cannot make myself understood. I am using my speech app but it is slow and conversations move on before I can finish typing. I am still fully mobile and able to get out and about but am finding I am doing so less and less. I really don’t know what to do for the best. xx
            Bulbar onset diagnosed Nov 21. No speech but limbs ok so far.

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              #7
              Lizzie I really identify with that. I have an electric wheelchair to get out now, but know if I meet people I know but not very well, my voice is so strange and it’s such an effort to speak, and a lot of people don’t understand it anyway. Difficult for me to feel like me when I am so aware how strange I sound. And am so slow with typing. It seems it’s mostly close friends and family I feel take time and speak to the real me. So it’s tempting to just withdraw. But I guess people’s suggestions just to be brave and get out there and do what you want, and not worry about what others think, is a good one to remember for me at least. Then you could be surprised with it not being as bad as you thought? Xx
              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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                #8
                Lizzie, thank you sooooo much for posting such a 'bare all' post - I am sure it was difficult to do 😘😘🤗🤗

                Originally posted by Lizzie View Post
                ... I just wonder if this is a common feeling among we “special people” .
                Speaking personally, a big fat YES - I dreaded meeting anyone I knew because I didn't want to be confronted with pity, awkwardness and embarrassment, so I became very antisocial.

                Then... one day I woke up and thought, F this, my world is too small, and I made a conscious decision to meet more people, more often.

                The more people I met, the braver I became and, in general, people, from old acquaintances to new, have responded really well. It took a while for my confidence to grow - baby steps really - and, although I rarely go out now, everybody is welcome into my house: my kids' new friends, new neighbours, friends of friends whom I've never met, long lost cousins, husband's work colleagues, etc etc.

                It has benefited my family too but I know I had to be in the right frame of mind to make that 'F this' decision - seeing only a handful of people outside of my family and carers wasn't who I was/am.

                Everyone is different and I truly hope that you manage to find your own happy medium.

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

                Comment


                  #9
                  Ellie yes you are brave, and it has paid off for you. On finishing my post, I was thinking it’s so much depending on how b
                  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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                    #10
                    Brave we are feeling xx (wobbly hands again!) Hope I can find some of that bravery, but if I don’t, that’s just me xx
                    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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                      #11
                      Hi Lizzie

                      You are certainly not alone in feeling like this. I too have lost my speech and agree that is impossible to keep up with conversations with Predictable. The number of times I have typed something and then deleted it. It gets very frustrating.

                      I have withdrawn socially and only see close friends and family. I find it easier with just one person at a time,

                      I am getting braver though as certain situations demand it. I go to the Well Being Centre at the local hospice, where I am the only one with no speech. I can now chat with others.

                      I am still walking and driving but am very conscious of my inability to talk.

                      I do think Ellie is right though and it is better not to care what others think. x

                      Diagnosed 3rd November 2021 Bulbar Onset

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                        #12
                        Lizzie, like others here, absolutely agree with what you say. It's very hard losing so many of the things that make communication, freedom to get out and about, socialising, and just our overall autonomy. There are ways to adapt, but it is always a different life, not the same. I feel more comfortable with a smaller group of familiar people, at ease with them knowing what I can and can't do, and that I gradually can do less and they don't make a big deal about it. I have found new interests/causes that give me a bit of a new direction/take back some control xx

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                          #13
                          Thanks to all of you who have replied. It’s comforting to know that others experience similar feelings.
                          I know I have to just not worry about it. It is what it is, but it can feel pretty lonely in this MND place can’t it? It takes away personality, communication and the numerous things that make us who we are. 😘

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                            #14
                            Yes totally agree. I was a very sociable person. I also worry about meeting up with people. I also don't like upsetting them as those who haven't seen my for a while notice how poor my speech is.

                            However I am now challenging this. A friend is coming tonight for a visit and I'm going to a few parties. I'm nervous but I know that it will be worth it.

                            I have purchased a lanyard that I had printed. It says I cannot speak in large letters on the lanyard then on the name badge bit it says but I can understand.
                            But you have to do what you feel comfortable with but who knows by you giving it a test run that it could be great xx
                            Diagnosed May 2021 bulbar onset als.

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                              #15
                              Lizzie I appreciate you're sharing how things are for you. The more we share the better IMO.

                              For me it's varied....some days happy to have company other days prefer solitude. So I pick & choose.

                              The essence of me is still here....whatever MND throws at me....💙😘
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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