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    Bad week

    Hi folks, sorry I’ve not been on for a while, the work started on the wet room 👍 so been stuck in the bedroom sat in a garden which is more comfortable than my wheelchair 🙄 that I could cope with but the I broke my tooth/bridge 🥺 which was so sharp and making my tongue so sore, but couldn’t get appointment as I needed a home visit.It took Phil days and many hours on the phone trying to get me sorted, I couldn’t concentrate on anything I had that much saliva I couldn’t swallow unless I chomped on my teeth loads until I could swallow.
    Finally on Friday someone came and ground the tooth down that’s all they could, it’s not perfect but brought me some relief 🙏🏻 so now stopped salivating so much and chomping 😬 Missed you lot ❤️ X
    Janette x

    #2
    Oh Janette, someone found that damn Voodoo doll again 😪 How awful and exhausting for you...

    We missed you too - I thought you may have gone elsewhere to escape the work and were having too good a time; how wrong I was 😟

    Good to hear you've been patched up somewhat.

    Welcome home 🤗🤗🤗😘😘
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #3
      Thanks Ellie ❤️ Oh I wish I’d gone somewhere else 😬 but I survived last week this week can’t be any worse, I just have to think of the end result 👍 love Janette x
      Janette x

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        #4
        No pain, no gain, eh?

        When we bought this new house, my bathroom needed to be ripped out and turned into a wetroom and, unbelievably, the vendors said we could do it before we signed final contracts!! Later we found out the lady's brother had MND.

        This act of kindness and compassion saved me so much stress and grief 👍👍
        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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          #5
          When you've spent time in hell you will enjoy Paradise after. Stay Strong my girl. 😁🤗😘😍xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            That was lucky 🍀 less stress x
            it took them a day an half to find the manhole 🤦🏼‍♀️ But when they did find it they also found a collapsed drain which was pumping water under the house so that was lucky 🍀 x
            Janette x

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              #7
              Originally posted by matthew55 View Post
              When you've spent time in hell you will enjoy Paradise after. Stay Strong my girl. 😁🤗😘😍xx
              Thanks Matthew I will enjoy the paradise when I get in that shower 🚿 and get my bum washed & dried instead of Phil doing it 🤦🏼‍♀️😂 x
              Janette x

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                #8
                Oh Janette.. I'm so sorry you are having such an awful time. Life is hard enough without the pain of a broken tooth.

                It must be awful to be stuck in the bedroom and itseems to have gone on such a long time.

                When we had our wet room done I really wanted to go away but the builders weren't keen as they wanted to be able to contact us about rails, tiles electrics etc. It took two weeks and was very noisy when they drilled the floor but at least I was able to get out.

                Just keep dreaming of that 🚿 shower... it doesn't sound like it will be too long. Its funny although probably not funny haha 😆 the things we dream of when living with MND.

                Love and hugs to you. We missed you. 😘🤗xx

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                  #9
                  Originally posted by Nettie View Post
                  ... they also found a collapsed drain which was pumping water under the house so that was lucky 🍀 x
                  Lucky indeed!! You'd have been in bed one night and suddenly there'd be a real earth moving experience as the foundations collapsed... 😲😱

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

                  Comment


                    #10
                    Originally posted by Deb View Post
                    Oh Janette.. I'm so sorry you are having such an awful time. Life is hard enough without the pain of a broken tooth.

                    It must be awful to be stuck in the bedroom and itseems to have gone on such a long time.

                    When we had our wet room done I really wanted to go away but the builders weren't keen as they wanted to be able to contact us about rails, tiles electrics etc. It took two weeks and was very noisy when they drilled the floor but at least I was able to get out.

                    Just keep dreaming of that 🚿 shower... it doesn't sound like it will be too long. Its funny although probably not funny haha 😆 the things we dream of when living with MND.

                    Love and hugs to you. We missed you. 😘🤗xx
                    Yes it’s hard being stuck in but we’ve found our routine again now so it’s getting easier 🙏🏻
                    And it’s been very noisy 🙉 it should be finished by Friday the tiling has started today 🤗 love Janette x
                    Janette x

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                      #11
                      Originally posted by Ellie View Post
                      Lucky indeed!! You'd have been in bed one night and suddenly there'd be a real earth moving experience as the foundations collapsed... 😲😱
                      Imagine that 😬😱 it doesn’t bear thinking about x
                      Janette x

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                        #12
                        Nettie sounds very tough and noisy being trapped there, hopefully you are on the last leg and will really appreciate the result. I am away out of my house for 4weeks whilst my adaptations are done, and have been wondering how I would survive as life seemed difficult enough as it is. People have been very kind though. I have had thoughts about what if I get ill, or even COVID-19! If I died during the 4weeks, would the builders immediately put down tools and leave it in a terrible mess for my children? !! Ridiculous I know. Let’s hope we’ll soon be so pleased and relieved! Love, Heather x
                        Diagnosed July 2020, ALS bulbar onset.

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                          #13
                          Heather R yes it’s been very stressful and I wished I could of gone somewhere else while work was being done but we’re on the home stretch now 🤗
                          I know exactly what you mean about thoughts I was the same when having a meltdown last week I was shouting at Phil that we’ve waited that long I’ll probably die before it’s finished!!! 🤦🏼‍♀️🥺
                          Hope everything goes smoothly love Janette x
                          Janette x

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                            #14
                            We certainly have odd thoughts at times, don't we 🥴 🙃 xx
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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                              #15
                              Nettie snap. Our wet room going in and on Saturday I had a huge meltdown and shouted and scream the exact words to my other half.

                              Then the contents of the top of my dressing table got thrown across the room.

                              Its pants isn't it. X
                              Diagnosed May 2021 bulbar onset als.

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