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Thread: So so tired

  1. #21
    Forum Member Ellie's Avatar
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    You should have an assessment by a Dietitian if possible Pink. The clinics generally have them and usually there are community ones too (I guess it varies depending on where you live) 3 months is probably a bit of a wait to see the clinic Dietitian, especially as your appetite isn't 100% right now, but maybe your MND Nurse, Community Nurse or GP can get a Dietitian to visit you.

    The lack of appetite often goes hand in hand with fatigue - which can turn into a Catch 22 situation - as well as the 'dreaded' constipation!!

    Dietitians aren't just for those with swallowing issues & feeding tubes. They will give advice on how many calories we should eat and from which sources, and how much fluid intake is required. Often we don't eat enough to keep up with the extra energy demands our bodies have.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #22
    Forum Member Pinkelle's Avatar
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    Thanks for that info Terry and Ellie. I didn't think about that. I will ask.

  3. #23
    Forum Member Terry's Avatar
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    It is quite an important member of the team and is handy for many of us.

    The speech therapist checks out the swallowing here, I am not sure why as you would have thought that a dietitian would be better.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #24
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Terry View Post

    The speech therapist checks out the swallowing here, I am not sure why as you would have thought that a dietitian would be better.


    Just in case I confused people!!

    I didn't mean that a Dietitian assesses anyone's swallow, but is there to give advice on calorie requirements and how to get them to those who can't physically eat enough if their swallow is compromised, and to prescribe supplementary feeds if necessary.

    Hope that clarifies what I wrote.

    Love Ellie.
    Last edited by Ellie; 16th April 2018 at 18:25.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #25
    Forum Member nunhead_man's Avatar
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    And can add about drink, given that my lot suggested 2 L of water a day as they noticed I wasn't drinking very much and said it was important that I did.

    It means I need to get to the toilet a lot , but I guess is that is a sign that I have not been drinking enough water for quite a long time
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

    "Things turn out the best for people who make the best of the way things turn out"

  6. #26
    Forum Member Pinkelle's Avatar
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    I know I don't drink enough. But with my bathroom being upstairs I don't like drinking too much as im forever going up and Down the stair lift! Not too long to wait for my downstairs wetroom now then I will make a point of drinking more

  7. #27
    Forum Member Terry's Avatar
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    Do try to have atleast one and a half liters or more if you are active. I know that has repercussions but probably better than the things you can get if you don't drink enough.

    OT could give you a temporary solution but i hope your new shower room will be open this week.

    Love Terry

  8. #28
    Forum Member Terry's Avatar
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    Hi all,

    I'm so so tired today. I had my best nights sleep that I can remember, nearly seven hours in one go and a couple of hours after that. I am taking a few more meds because of my bad back but nothing powerful.

    I normally sleep poorly and have loads of energy.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  9. #29
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    Thank you for commenting on this thread, Iíve read over time that tiredness can affect us all differently but Iíve been very lucky in that I find as the day goes on the tiredness increases however I seem to now have a whole day just feeling I have no energy and the following day can be good, my oximetry tests are 97% and my breathing is unaffected so far fingers crossed is this normal to have days just feeling tired or is there likely a cause? Iím still waiting for my PEG can reduced fluids affect me this way?

  10. #30
    Forum Member Kayleigh's Avatar
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    Hi Hayls

    There are various reasons why we might become tired more easily, as explained in section two of the factsheet below. Also, you might be feeling tired if you are not keeping hydrated or if you are not consuming enough calories, including the necessary vitamins and minerals. If you have a dietitian then that person should be able to give you deatailed advice about your diet and how it can be adjusted, if necessary.

    Mnda factsheet about managing fatigue
    http://https://static.mndassociation.org/app/uploads/2017/05/19135408/11D-managing-fatigue.pdf

    Love
    Kayleigh

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