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Thread: So tired

  1. #11
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Terry View Post
    I think that I will try to get to the breathing clinic and have a over night sats monitor before hand.
    That way you will know what you're dealing with at least and, if necessary, you can start NIV to give you some extra power in your battery pack

    Even though I know you've other things on your plate, try to organise the monitor asap.

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

  2. #12
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Hayls View Post
    Iím sleeping a lot more than usual and feel easily exhausted with the smallest of activities,
    Hi Hayls,

    It sounds as if you maybe should have an overnight pulse oximetry test too.

    If you don't know what it is, it's a fingertip monitor which measures your oxygen sats (SpO2) during the night and a wristband.

    The monitor records your data, which is then sent back to the MND or Respiratory Clinic, who download and review your data. If your Sats (oxygen levels) drop during the night, you'd likely benefif from using NIV, also known as BiPAP or Nippy, *if* you want to use one.

    NIV benefits include better quality sleep; more energy; better appetite and increased mood, to name just a few.

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

  3. #13
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    Hello Ellie, Southampton hospital are already on the case, done my oximetry meter 2 nights ago and sent in the post to return and I have an appointment 5th February, fingers crossed

  4. #14
    Forum Member Ellie's Avatar
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    On the ball Hayls !!
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #15
    Forum Member Ellie's Avatar
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    How is the back pain Terry, easing somewhat or as bad as ever?

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

  6. #16
    Forum Member Terry's Avatar
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    I was nearly in a nursing home today, Ellie;

    I was in so much pain last night getting into bed, slept OKish so live another day. Seen Doctor and he has given me codeen and referring me to a skeletoe physio specialist.

    Grandad should be taking me out for a while tomorrow, just hope it drys up.

    Love Terry

  7. #17
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    Hi Ellie

    I am really fed up with it but I am more concerned about being on so much imodium every few hours every day but my GP (who is brilliant and comes to the house regularly ) and my dietitian who has been involved from the beginning both say that I have to stay on the high dose for two weeks and then gradually reduce the imodium and see what happens.
    If I am honest I think that I will be back to the beginning but at least at the moment I have no diarrhoea and oramorph is letting me sleep and I am getting stronger.
    I did watch the programme with Steph McGoververn and I am taking probiotics so maybe that may help.
    I have tried 5 different peg feeds and I don't think that it is food related.
    All rather frustrating but I am sure that we will get there !
    I hope that you are keeping well xx

    Love Sarah xx

  8. #18
    Forum Member Ellie's Avatar
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    Oh Terry, it breaks my heart that your back is so painful

    I hope you don't have to wait long for the physio and that, when you do get there, he/she knows what they're doing !!!

    Don't forget that Codeine will probably slow your bowels, so get in an extra box of Movicol

    Sending you a big hug and hope you get out with Grandad very soon.

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

  9. #19
    Forum Member Ellie's Avatar
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    Thanks for the update Sarah.

    Good to hear you're finally sleeping better and getting stronger and also people are keeping an eye on you!

    I am good, thanks for asking. There are signs of spring in the garden and it's not dark at 4.30pm any more - woohoo

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

  10. #20
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    Isn't it wonderful to see signs of spring and when the days start to drag out you know that you have nearly got winter behind you. Although I see that there may be snow on the moors tonight

    I hope that the early snowdrops survive

    Love Sarah x

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