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  • Pinkelle
    replied
    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

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  • nunhead_man
    replied
    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

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  • Ellie
    replied
    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; 16 April 2018, 17:25.

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  • Terry
    replied
    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

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  • Pinkelle
    replied
    Thanks for that info Terry and Ellie. I didn't think about that. I will ask.

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  • Ellie
    replied
    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.

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  • Pinkelle
    replied
    Dietitian? Don't have one of those. I'm eating OK, but have lost my appetite slightly.

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  • Terry
    replied
    Or get your dietitian to prescribe Chocolate Fortisp 250ml drinks, they are quite nice and helps fill you up giving you a balanced diet.

    I take them out with me just incase I can't get suitable food or we get stuck in a traffic jam.

    Love Terry

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  • Pinkelle
    replied
    Hmm... Chocolate, now you're talking! And you can get it without prescription!

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  • Ellie
    replied
    Hi Pink.

    It's a pity they took away the Nippy as you'd been using it during the day.

    Our oxygen and carbon dioxide levels during the day can be quite different than overnight levels, but if you weren't using it you'll be no worse off.

    Hope you can find something to reduce your fatigue - there's always chocolate !

    Love Ellie.

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  • Ellie
    replied
    Hi Andy,

    I understand the hesitancy and reluctance not to take meds, but don't be a martyr for too long, especially if your sleep is suffering...

    It's all such a balancing act isn't it?? (I'd make a great tightrope walker now if it weren't for this damn ALS )

    Love Ellie.

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  • AndyB
    replied
    Hi Ellie,
    Sorry for the delayed response.
    I've been told that my MND is the ALS variety. I have seen a physio a couple of times and she has given me exercises to do to stretch the muscles. I'm not taking any meds for the discomfort yet as I'm trying to avoid them as long as possible. I'll give the pillow under the knees a try.

    Love Andy

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  • Pinkelle
    replied
    Had my appointment with respiratory centre this week and came home without the nippy. I wore a device on my finger which checked my oxygen levels and they checked my blood. Turns out my oxygen levels aren't too bad so as the machine wakes me up they said they'd review me in 3 months. I'll have to put the fatigue down as part and parcel of the disease.

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  • Pinkelle
    replied
    Had my appointment with respiratory centre this week and came home without the nippy! I wore some sort of oxygen test device on my finger the night before and they checked my blood for oxygen levels. They said they weren't bad. So they said they'd review me in 3months as its obvious I'm not getting any benefit from the nippy especially as it wakes me up. I just think I've got to put up with fatigue being part and parcel of the disease!

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  • Ellie
    replied
    Do you know your exact diagnosis Andy? If you're towards the UMN (Upper Motor Neuron) Dominant or PLS end of the spectrum, you're more likely to experience worse spasticity - the leg locking symptom - and it could explain the slow progression and annual breathing tests. Whatever the reason, it's great that, 2 years on, you're still on your feet!!

    Do you take any antispasmodic meds eg Baclofen? Gentle exercise (if safe to do so) such as swimming or cycling a stationary bike, can lessen spasticity.

    Do you have access to a physiotherapist?

    For bed - try putting a pillow under your knees to ease the muscle tone - or you might have to take meds at bedtime. If the pain is from cramps, try magnesium (careful, it has a laxative effect!!) or your GP can prescribe quinine sulphate.

    Love Ellie.

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