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    #16
    good for you mary. i cant imagine that it could be easy. i think a natural response to anything on our faces is to try and rub it away. so 4 hours is really good. stephen gets fed up with his and might take it off and leave it if he cant be bothered to put it back on. after all its for your good and if you feel you get some better sleep without it then you have to do what makes you feel good. no good hanging on to it then feeling exhausted during the day. you could always use it during the day. might be easier awake and reading, tv or listening to something.

    well done
    love denise xx

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      #17
      Mary C good on you Mary. Do what’s right for you tho

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        #18
        Good to hear how you are doing Mary, hope it gets easier over time. Big brother keeping an eye on you as well! x
        Diagnosed July 2020, ALS bulbar onset.

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          #19
          Hi Denise,
          It was me! (Hospital bound). I was given a NIV yesterday but I haven’t taken it out of the bag yet! Trains and toilets (Changing places toilet excellent at St Thomas’s- but couldn’t reach soap dispenser!) left me wiped out! I have to start today as, like you, they monitor how much you use it. It’s a very weird sensation but i will persevere. Good luck Matthew!

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            #20
            Hi Sarah

            chicken not taking it out of the bag. Can't blame you but you have to be brave and eventually go for it! Think Mary has the right idea little bit at a time and do what suits you.

            good luck let us know how you're doing.

            Denise xxx

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              #21
              Well done Mary, I don't use NIV but four hours sounds like a really good job for a first night. You should feel very proud of yourself.

              You deserve a treat today! X

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                #22
                Originally posted by Sarahw View Post
                Hi Denise,
                It was me! (Hospital bound). I was given a NIV yesterday but I haven’t taken it out of the bag yet! Trains and toilets (Changing places toilet excellent at St Thomas’s- but couldn’t reach soap dispenser!) left me wiped out! I have to start today as, like you, they monitor how much you use it. It’s a very weird sensation but i will persevere. Good luck Matthew!
                A huge well done to you Sarah for going to the hospital and negotiating the train ! You must have been exhausted. Good Luck with trying it today 🤞x

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                  #23
                  You did really well, Mary, not many manage 4 hours straight on night 1 - go you!!

                  There are special pillows for side-sleeping NIV users, with cutaways on the sides, so the mask does not get squashed/moved - maybe one would help you? It's worth asking your resp team, who may have one, if not, they are available to buy.

                  Maybe the humidifier was set too low?

                  Anyway, well done. I knew you'd do it! (The PEG procedure only takes ~30mins)

                  Love Ellie.
                  ​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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