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MNDA and Sleep - Deffo not about early rising!

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    MNDA and Sleep - Deffo not about early rising!

    Most of my life I have slept really well. When I needed to get up for work, I never enjoyed it, but once out of bed for a few minutes, I would feel fine.

    These days, since I gave up my part-time work, I sleep for up to 10 hours a night. I have always slept a long time, when here was no reason to get up, and sort of assumed it was because I am a lazy person. I never imagined I needed such a long sleep.

    However, last Friday, I had to get up at 08:30 to open our garden gate for the lawn people. Had slept under 8 hours, but expected to feel fine after getting up, going outside and opening the gate. To my surprise, as I walked back indoors, I felt very strange; neither awake of good. Made the unexpected realisation that now, I NEED even more sleep!

    Next Tuesday I will need to get up at 07:00 for a particular job โ€“ if my sleep need is correct, I will need to go to bed by 21:00!!!! That has only ever happened when I get a migraine, and I am certainly not wishing one of those to arrive!

    Wish me luck!!!
    Mum died with MND in 1979 โ€“ I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

    #2
    Lovely to hear from you Evelyn!

    Originally posted by EvelynMW View Post
    ... I felt very strange; neither awake of good.
    Just wondering if you've had any pulmonary tests recently?

    Hope everything goes well for you on Tuesday ๐Ÿคž๐Ÿคž 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€‹

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      #3
      I get good days and tired or rather lethargic days. I understand though this is common. Todayโ€™s a tired day as I was out for seven hours on Friday with three hours driving and yesterday for five hours with two hours of driving.

      So today is a stay at home and do nothing day ๐Ÿ˜€

      Richard
      Richard

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        #4
        I often forget that tiredness can be a symptom and I resent the fact that I have less energy. Fortunately I love my bed!

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          #5
          Ellie No, no pulmonary tests, as far as i know! richard My husband won't let me drive very far at all - he is a worrier by nature and believes i will run out of energy or fall asleep at the wheel. Odd, since he is the one who naps during the day - not me!

          Sarahw I certainly have less energy. Gave our study a careful vacuum clean, using the thin sucker for the edges etc - i was worn out afterwwards!!

          Must get back to doing exercise - usedd to do Pilates once a week and several days folllowing you tube exercise people. Maybe today!
          Mum died with MND in 1979 โ€“ I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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            #6
            Originally posted by EvelynMW View Post
            Must get back to doing exercise ... Maybe today!
            ๐Ÿ˜‚๐Ÿ˜‚ ... or maybe tomorrow ๐Ÿคญ ๐Ÿ˜˜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€‹

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              #7
              I've turned back time to being a toddler....I need three naps a day ๐Ÿ‘ถ

              Fatigue is probably my biggest issue at this point๐Ÿ˜ด
              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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