So so tired

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  • Ellie
    Forum Member
    • Oct 2012
    • 12575

    #31
    Sorry to hear your energy is low Terry - pain can be draining on even the fittest person, so it could be that you're just exhausted by enduring pain?

    I am sorry to bring this up, and you'll know better than me, but if you slept longer than usual, perhaps your Sats suffered and you're playing catch up?

    Big hairy hug to you.

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

    Comment

    • Ellie
      Forum Member
      • Oct 2012
      • 12575

      #32
      Hi Hayls,

      Yes indeed there are days when we can't summons the energy to do much.... It's best to conserve our energy for good things. Do you ever take a nap in the afternoon to recharge?

      To answer your question; yes, dehydration can definitely cause lethargy. Are you able to eat enough calories? Even a small decrease in calorie intake can zap your energy reserves.

      You mentioned your breathing isn't affected, which is great to hear. Often with no obvious breathing difficulties or bouts of breathlessness, our lung function may still be compromised - this may not be in your case but did you have breathing tests recently? Sats can be at 97% even with weakening breathing muscles.

      Hopefully you'll soon get a feeding tube which will take a huge amount of stress off you regarding eating and drinking.

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

      Comment

      • Hayls
        Forum Member
        • Jul 2019
        • 145

        #33
        Thank you Kayleigh and Ellie for your support, it’s just been a sudden change and got me worried, I’ve found I can’t fall asleep during day but my body feels tired, I’m keeping my fingers crossed for my PEG procedure, I’m just finding it hard to adjust but just to know that I’m not the only one that has encountered this, I know you amazing people can guide me to keep going, thank you

        Comment

        • Ellie
          Forum Member
          • Oct 2012
          • 12575

          #34
          Hayls, if it's a sudden change, it's always wise to have yourself checked out in case an infection is responsible.

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

          Comment

          • Hayls
            Forum Member
            • Jul 2019
            • 145

            #35
            Oh, never thought of that, I’ll see how I am tomorrow, thank you

            Comment

            • Sheila
              Forum Member
              • Feb 2019
              • 299

              #36
              Hi Ellie, well I finally done it, I had the peg fitted yesterday. It wasn't a pleasant experience. But I got through it. I stayed in hospital one night and came home this afternoon. I think they wanted me to stay longer, but after a sleep less night, they let me go home. Still pain full but I understand this could last a couple of weeks. So pain killers for a while. I am glad I got it out of the way.
              Thanks everyone for your help. ( especially Ellie )
              Love Sheila x

              Comment

              • Kayleigh
                Forum Member
                • Nov 2018
                • 1227

                #37
                Well done for being so brave Sheila! Hopefully you will be more relaxed, now that you are back home, and I hope you get a good night's sleep tonight.

                Love,
                Kayleigh x

                Comment

                • Gillette
                  Forum Member
                  • Mar 2019
                  • 710

                  #38
                  Hi Sheila, I’m so sorry having the PEG fitted was unpleasant for you. Be careful with the site of the tube as, if it gets caught on clothing or when being washed or dried, it can hurt. I hope you’ll feel brighter very soon.
                  Dina

                  Trying to keep positive, but not always managing.

                  Comment

                  • Deb
                    Forum Member
                    • May 2018
                    • 2179

                    #39
                    Hi Sheila, hats off to you for being so brave !

                    I am sorry you are uncomfortable but hope you are enjoying some home comforts and as you say, it's done.

                    Hope you're feeling better soon
                    Love Debbie x

                    Comment

                    • Sheila
                      Forum Member
                      • Feb 2019
                      • 299

                      #40
                      Thank you, Kayleigh, Dina and deb. I had a good night's sleep last night. All a Bit strange getting use to these new things.
                      Love Sheila x

                      Comment

                      • Ellie
                        Forum Member
                        • Oct 2012
                        • 12575

                        #41
                        Oh I am so glad it's done now Sheila - hope you're proud of yourself, I know I'm proud of you

                        Yes, it certainly is strange having these things but they really do help us and, let's face it, we need all the help we can get!!!

                        Keep on top of pain by taking the painkillers regularly, if you've pain you'll tense up your tummy muscles and that will make it worse - if they contain codeine, or similar, watch for constipation.

                        Take it easy now and give yourself plenty of time to recover.

                        Big hug to you.

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

                        Comment

                        • Ellie
                          Forum Member
                          • Oct 2012
                          • 12575

                          #42
                          Hello dear Terry.

                          I hope your back pain is less today and you've a bit of energy too?

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

                          Comment

                          • Sheila
                            Forum Member
                            • Feb 2019
                            • 299

                            #43
                            Thank you Ellie! I am pleased I had it done now. I think I will put on some much needed weight. Your advice and encouragement helped me no end!! You really are a star and your knowledge is unbelievable.
                            Big hugs
                            Sheila x

                            Comment

                            • Kayleigh
                              Forum Member
                              • Nov 2018
                              • 1227

                              #44
                              Hello Sheila,

                              I hope you are feeling ok after your operation and you are managing to get enough sleep.

                              Love Kayleigh x

                              Comment

                              • Kayleigh
                                Forum Member
                                • Nov 2018
                                • 1227

                                #45
                                Hello Terry,

                                I hope your back is becoming much less painful and you are also getting enough sleep.

                                Love,
                                Kayleigh x

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