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    Fatigue

    I was warned about fatigue but as have never had fatigue did not think it would apply to me .Seems I was mistaken and fatigue has hit today - am still in bed a first for me .
    Going. to go on NIV in the hope it will help.
    Any tips in dealing with this ?


    #2
    Good luck using the NIV..have you been assessed as needing it now?
    I get tired but quite often just lie on bed for an hour or two in the afternoon ..reading, or watching TV etc.
    Occasionally I sleep for a hour in afternoon.
    I didnโ€™get on with using the NIV but might try it again after I discuss it with respiratory nurse soon.
    Best wishes
    Mary

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      #3
      Originally posted by bromleycross View Post
      ... fatigue has hit today - am still in bed a first for me .
      Sorry to hear that. If it came on out of the blue, it's always best to make sure there's no underlying infection causing your fatigue.


      Originally posted by bromleycross View Post
      Going. to go on NIV in the hope it will help.
      I thought you already use NIV or maybe you meant you are going to use it for a while now to see if it peps you up somewhat? If you are lying down in bed for several hours longer than usual, you might not be doing yourself any favours if you're not using NIV. A conflicting situation for sure...

      Sending you a special hug ๐Ÿค—๐Ÿค—๐Ÿ˜˜

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

      โ€‹

      Comment


        #4
        I also find fatigue a tough one....no matter what I do my energy is zero....I'm hoping NIV (once I have it) will help.
        How do you find in general getting on with NIV? bromleycross
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

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          #5
          I use coffee: seven spoons of coffee and six of brown sugar in a mug, allow to cool down. Then two or three 60ml through my PEG. ๐Ÿ™๐Ÿ˜๐Ÿ‘๐Ÿ˜€xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

          Comment


            #6
            Originally posted by matthew55 View Post
            ... seven spoons of coffee and six of brown sugar in a mug,
            ๐Ÿคข๐Ÿคข What's your stomach lined with - tungsten?? ๐Ÿ˜˜

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

            โ€‹

            Comment


              #7
              Lol. I take something to protect against ibuprofen but it's more to do with years of abuse. ๐Ÿ˜๐Ÿ˜๐Ÿ˜š๐Ÿ˜˜xx
              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

              Comment


                #8
                Strong black coffee is my daily wake up but minus the sugar - needed 2 today.
                Sorry meant an extra hour of NIV may perk me up but didnโ€™t today but I am having a NIV and blood gases check on Friday so may need to up levels on ventilator.
                Linda I was very resistant to NIV and being claustrophobic did not help but now I use it nightly and quite enjoy using it as it helps me sleep.If you are trying it and it will be assessed by your blood gases try using it whilst sat up in bed then every 5 mins lie down a bit this does help if you have a hospital bed. I found by slowly lying down until in my sleeping position helped immensely . I now even cope with the chin strap to help keep my mouth closed - stops me snoring too. Once on the whole contraption looks like a scoldโ€™s bridle - Iโ€™ll let you google that one Jane xx

                Comment


                  #9
                  bromleycross thanks for that insight. ๐Ÿ‘

                  Scold's bridle....๐Ÿ˜‚
                  Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.โ€‹โ€‹โ€‹โ€‹โ€‹โ€‹

                  Comment


                    #10
                    Originally posted by bromleycross View Post
                    Once on the whole contraption looks like a scoldโ€™s bridle
                    You've not seen the 50 Shades films then Jane? ๐Ÿ˜‰๐Ÿคฃ๐Ÿคฃ๐Ÿ˜

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

                    โ€‹

                    Comment


                      #11
                      Originally posted by bromleycross View Post
                      ... I am having a NIV and blood gases check on Friday so may need to up levels on ventilator.
                      That's timely. Good luck at the appointment. xx

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

                      โ€‹

                      Comment

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