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    Hi All

    I know that tiredness is a symptom of MND though I am not sure how to deal with it. I am a mother of a 5 and 6 year old and work a full time job. Between 9:00 and 9:30 at night I am exhausted and then I go to sleep. The problem is a then wake up at about 4 in the morning. Should I get up that early I am not that sure what to do?


    Tiredness is something my husband is always complaining of. He says he's ok until he gets out of bed. He has a breathing machine which helps during the night and now he's being fed through his peg he seems to be making it to at least 5.30. The arguments we would have when he would be up and outside (having a smoke) at 4am. Then of course tired during the day.

    perhaps if you stay in bed your body is at least resting. Knowing young children they will be getting up with you and that might cause a few arguments.

    you do work a very long day. Are you sure that's good for you?

    love and hugs Denise xxx
    when i can think of something profound i will update this.


      Hello Aalistoun, I have similar to you and I'm fortunate enough to be able to sleep in the day. Mine is to do with my breathing and I am going to get help with this in a couple of weeks so I will let you know how I get on. Stay Strong 👍x
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        I had a phase of being wide awake at 4am pre MND and occasionally since. The sleep specialists ((my research ) suggest that you don’t lie in bed wide awake but get up and do something not stimulate. The idea is that at some time in our past we all had two sleeps and this creeps back to some of us. Listen to calmly music or read something not exciting. After a short time , say half an hour do your bedtime routines again ie loo and teeth. Go back to bed and do some calm breathing ie count of four for breaths in and six for out breaths. It sometimes works. Good luck. Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.


          Thanks I think I wake up at 4am as I have already had my nights sleep though.


            Aalistoun In a way you have had a full night's sleep at 4am Ashleigh!

            Could you have a short nap when the kids are at school and go to bed later? My kids were 3 & 5 when I was diagnosed, so I know how full on the days are at that age!

            MND is a hungry illness and we only have so much energy, so use the energy wisely, not for tasks which others can do - be selfish, in the nicest way.

            You may need to up your calorie intake, something to discuss at your Clinic appointment.

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


              Hi Ashleigh,

              Tiredness is part of MND and broken nights don't help. I am often awake in the night but I have the luxury of snoozing in the mornings. You obviously can't do this with young children and a full time job.

              If you think you wake up because you are anxious or uncomfortable then you could speak to the nurse when you go to clinic. If it's because you've had enough sleep I would get up or read a book.

              I find my symptoms and my mood are worse after a bad night's sleep and if I have a busy day I plan a lazy day afterwards or before.

              Take care,
              Love Debbie x


                Aalistoun Sorry Ash, I forgot you still work full-time - I guess a midday nap is out of the question so 😏

                It's all about conserving energy, or using it wisely, at least. xx
                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                  Oh my goodness Aalistoun, you have got your hands full.
                  MND takes it out of you, I know, and I have not got little uns to look after.
                  I usually go to bed at about 0100hrs, because I am able to have naps during the day, I find I need them though.
                  I am afraid I dont have an answer for your problem Aalistoun, but you have my sympathy.
                  Diagnosed 2nd Jan 2020
                  Both arms/shoulders affected, left worse than right.
                  Progressive Muscular Atrophy suspected


                    Hello Ashleigh
                    haven’t got an immediate answer but going forward and regarding work life balance, are you able to work from home.
                    When you are ready to tell your employer, they should be able to offer ways to help, disability discrimination act comes into help, your consultant will help in anyway they can. I told mine what I wanted and that’s what he wrote in his medical report
                    When this pandemic is eased, I have already arranged to only go into the office 2 days a week
                    As long as there’s golf and beer I’m happy