Announcement

Collapse
No announcement yet.

Another day........

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Another day........

    Yesterday was worse for me the than the entire week before my over dose of sleeping pills. My NIV that I was finally getting to grips with started, the night before, to alarm a, few times claiming dislocation. So in the morning an email plea brings an engineer, who treated me as a simpleton, who left declaring it fixed. This was all on a Friday. So when I went to bed to eagerly hook up it alarmed, not once, twice or even three times but 8 times in about 15 minutes. Now I still take 2 sleeping pills but even they wouldn't compete. So resigned I went looking for my chin strap, which I couldn't find anywhere. Into bed then and damn the consequences. 7 hours later I woke up with a clear nose, no coughing and most importantly no severe neck pain. It was, 5 am so I had two hours before my meds. Although I did have a shot of Sodium water maker. I then did the jobs I had wanted to do the day before but really couldn't. I only ordered stuff that I am going to use in these plans and have developed 'Matt's Zen inner peace` This involves putting my head in a position that neck pain is not occurring anf focusing on any crappie film I can can find that's free to watch. Within 10 to 25 minutes I have achieved my inner calm. I know this as my nose becomes completely clear without use of tissues. Then a couple of tissues an hour to save dribbling. Why bother when I live alone because spittle stains like coffee. When I have said before about take one day I mean 24Hours quite literally. πŸ˜πŸ‘x 55 5
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

    #2
    Stephens niv, which is a bipap machine, doesn't have an alarm, only one that goes off if electricity is cut off and it needs to switch to battery. Might there be a problem with the plug.

    I've just noticed I'm sprayed with coffee. All up my arm. I'm losing the plot. 😦

    Comment


      #3
      Originally posted by denise View Post
      Stephens niv, which is a bipap machine, doesn't have an alarm,
      The machine has various alarms, they must be turned off - probably to preserve what's left of your sanity. 😍

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

      ​

      Comment


        #4
        yes ellie there's probably an alarm for rising damp

        Comment


          #5
          Hi Matthew, what a carry on.I have only just had my NIV but when I tried using it for a short period the alarm went off .I ended up ringing the respiratory team and after turning it off and on it seemed to work.
          Nobody wants to wear these masks but you can do without the hassle of alarms when you need to sleep.Hope tonight goes better.
          Best wishes
          Mary

          Comment


            #6
            I tried all of the above, so did engineer its still broken so why do you lot assume I have become simple minded????
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

            Comment


              #7
              Originally posted by matthew55 View Post
              I tried all of the above, so did engineer its still broken so why do you lot assume I have become simple minded????
              Mary is one of the nicest, most genuine lady on this forum, who was only trying to help you...


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

              ​

              Comment


                #8
                I spoke in anger and my sincere apologies to Mary. I switched off and on and it worked fine. I forgot that assume makes me.......😒
                Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                Comment


                  #9
                  Got it in one. πŸ™„

                  Comment


                    #10
                    Hi Matthew,
                    I start NIV wearing tonight and hope I can manage it.
                    I have been reading up on tips that’s might help me..on website called hope2sleep.co.uk.It seems to have handy hints for beginners like me on how to get used the NIV.
                    Glad your machine is working well again.
                    Best wishes
                    Mary

                    Comment


                      #11
                      All the best, Mary and Matthew. They certainly sound tricky, I look forward with trepidation to having to use one myself x
                      Diagnosed July 2020, ALS bulbar onset.

                      Comment


                        #12
                        Thanks Heather, I take heart by reading encouraging messages on here by people who have learnt to get used to the NIV.
                        Nobody wants one ..but let’s hope I can feel some benefit.
                        Lined up relaxing music etc for my bed time tonight when my NIV and I become acquainted.
                        Best wishes
                        Mary x

                        Comment


                          #13
                          Good luck Mary I will be thinking of you.

                          wasn't someone going to hospital today?

                          Comment


                            #14
                            All the best for tonight Mary. I really hope you have a comfortable sleep. X

                            Comment


                              #15
                              Hi Deb,Denise and Heather,
                              Well the first night of the NIV done.So I lined up relaxation you tube stuff, donned the mask with help from hubby Steve.Settled down but took a while to nod off .I am a side sleeper and felt when I moved air was leaking from mask.The indicator on NIV machine. Showed the mask seal was fine though.
                              Managed 4 hours before loo call and need for drink as dry mouth bothering me( despite a humidifier fitted to the NIV).
                              I took it off as was exhausted and needed some good quality sleep.

                              Tonights plan is to try and keep it on longer..I was advised by respiratory team it might take a couple of weeks to get used to wearing it all night.
                              The respiratory team at the hospital are going to monitor the usage by me remotely..so no chance of not getting on with it.πŸ˜‚
                              Oh well at least I am trying .
                              Best wishes
                              Mary




                              Comment

                              Working...
                              X