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Thread: So so tired

  1. #41
    Forum Member Ellie's Avatar
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    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 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  2. #42
    Forum Member Ellie's Avatar
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    Hello dear Terry.

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

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

  3. #43
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    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

  4. #44
    Forum Member Kayleigh's Avatar
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    Hello Sheila,

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

    Love Kayleigh x

  5. #45
    Forum Member Kayleigh's Avatar
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    Hello Terry,

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

    Love,
    Kayleigh x

  6. #46
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    Hello Kayleigh
    Yes, I am catching up on some needed sleep. All seems strange this feeding lark. But I will get used to it.
    Love Sheila x

  7. #47
    Forum Member Terry's Avatar
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    On the 5th I was so tired even though I slept the best night for years. For a couple of days my tiredness got worse and I felt hot all of the time, requiring a fan and a cool room to be ok. This continued for 2 or 3 days. My temperature was quite normal during this time. I could not watch TV or use the computer etc, and I couldn't stop my legs especially the top front muscles tensing up and causing pain long term.

    I also lost any appetite and could not eat a found it hard to drink. I had some headaches during that time but put them down to the virus. Had one nap in a chair when I woke up with a probable CO2 headache.

    We went to the doctors Wednesday, he checked me out saying that my lungs are clear and my pulse throat etc where normal. He also sent a swab of my feeding tube area and sent it away with a water sample just on a off chance because I was concerned about them. We spoke about the difficulty in getting a flu jab and he done that as well.

    Over the whole time I not had or other flu or cold symptoms and I have been slightly improving the last couple of days.

    Last night I woke up to four bad headaches that improved and pretty much went away within thirty minutes. This means that I have CO2 building up.

    My breathing has been pretty much the same for two years and every month or so I have a headache due to CO2.

    I normally spend some of the time on my side where it is probably easier to breathe but because I hurt my back two weeks ago I have not been able to do so.

    I am very concerned that the virus is still around and for some reason affecting my breathing now. I have sleep apnoea so might be making that worse.

    Over the last two days I've been eating and drinking well and not feeling hot very often.

    Love Terry
    Last edited by Terry; 14th December 2019 at 13:42.

  8. #48
    Forum Member Barry52's Avatar
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    Hi Terry,

    I’m sorry to hear that you have not improved and still appear to be shaking off the virus. This time of year is so difficult for us trying to avoid viruses when we have a weakened immune system. I assume you have a way of measuring your CO2 levels. Have you considered NIV?

    I hope you are soon back to the normal TC we love.

    Barry
    Iím going to do this even if it kills me!

  9. #49
    Forum Member Gillette's Avatar
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    Hi Terry

    Iím sorry youíre having a tough time. Have you thought about ringing your MND nurse and/or respiratory nurse about your breathing? It would be a good idea to have it checked out sooner rather than later.

    I hope you feel brighter soon.

    Hugs
    Dina

    Trying to keep positive, but not always managing.

  10. #50
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    Hello Terry,

    So sorry you have been having such a rough time. Here's hoping you are on the mend soon and back to your usual wonderful self.

    There are lots of horrible viruses at the moment so it becomes hard to know the cause but
    do get checked out again if you are unsure.

    Hugs to you,
    Love Debbie x

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