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Thread: Meltdown

  1. #31
    Forum Member Lynne K's Avatar
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    Thanks Dina and good luck for you and he to have some nice times soon. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  2. #32
    Forum Member Gillette's Avatar
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    This post follows on from Terry's post about not getting upset as it doesn't do us any good.

    When I began this thread I talked about one of the carers (who I called "X"). I have discovered that, following the visit that day, X contacted the care company's office, claiming that I would not allow her to move my bed, which is completely untrue. During the visit, she asked me if my usual carers move the bed, to which I replied that they don't but if she wanted to move it that was fine. When I heard about the lie she had told about me, I was livid and told the agency that I would not allow her into my home again.

    Last week, I had an appointment with my consultant at the MND clinic at Salford Royal. During the appointment I became upset and was struggling to hold back the tears. The doctor was mildly shocked as he had never seen me upset before - even though I have seen him quite a few times and spent quite a bit of time with him, since then. In fact, he has commented on my positive attitude throughout the period since my diagnosis in November 2018.

    After each of the three times when I have been so upset, my MND has deteriorated markedly, so I wholeheartedly agree with Terry's comment about how getting upset doesn't do us any good. I am trying to keep on an even keel because of the way the MND bites back, but it can be very difficult.

    This d*mned MND doesn't play fair, does it?
    Dina


    Trying to keep positive, but not always managing.

  3. #33
    Forum Member Terry's Avatar
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    Hi Dina;

    Showing your emotions to a professional caring specialist doesn't do so much harm as they might help you release some frustrations.

    Life an't fair, is it?

    Do the best you can.

    Love Terry

  4. #34
    Forum Member Ellie's Avatar
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    You're better off without carer X, Dina - it's so important to have complete trust in each and everyone of your carers. (I've done the same with 2 carers over the years for lying)

    That undercurrent of stress does cause us physical issues and eventually it can't be contained, so it eventually comes out as tears of frustration, anger, life-loathing or self-loathing and often when least expected

    When I saw you posted at 04.24 I thought Crikey, I know it's bright outside, but why is Dina awake enough to post??

    You're clearly an intelligent person and I don't want to appear patronising, but good quality sleep is a great medicine in helping us cope both mentally and physically with our MND, so I hope you're managing to get a decent stretch of sleep most nights.

    Take care.

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

  5. #35
    Forum Member Kayleigh's Avatar
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    Hi Dina

    Getting upset might not be good for us in some ways, but I think that it's totally understandable with everything we have to cope with. I think we have to be kind to ourselves and allow ourselves to get upset sometimes, if we need to - as I don't think that bottling things up is good for us either.

    Good for you, for sticking up for yourself concerning carer X! Personally, I have zero tolerance for liars!
    ..... and if that carer wants to move other people's furniture around, I think she should change career and get a job at Pickfords! Lol

    It's good that carerX is banned from your home - I hope your other carers are always kind and caring and that they treat you with the utmost respect. No-one should have to put up with carers who are uncaring and can't be trusted.

    I think you are a very kind and caring lady - and a hero for being involved in medical research!

    Sending you lots of love and hugs.

    Kayleigh xx

  6. #36
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Ellie View Post
    When I saw you posted at 04.24 I thought Crikey, I know it's bright outside, but why is Dina awake enough to post??

    You're clearly an intelligent person and I don't want to appear patronising, but good quality sleep is a great medicine in helping us cope both mentally and physically with our MND, so I hope you're managing to get a decent stretch of sleep most nights.

    Take care.

    Love Ellie.
    Hi Ellie,

    I forgot about the time when I posted! I had woken with awful foot pain and it took a while for my partner to be able to get downstairs. Consequently, I was wide awake so I had a drink and something to eat whilst on my tablet. Don't worry, I do get plenty of sleep at night. I often have a treat in the morning: my partner helps me turn onto my side and I fall asleep. Bliss!
    Dina


    Trying to keep positive, but not always managing.

  7. #37
    Forum Member Gillette's Avatar
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    Thank you, Kayleigh, that's a kind thing to say about me.

    Most of my carers are lovely: attentive and kind - not at all like the Poisoned Dwarf!

    I don't mind getting upset, but I do mind that it seems to trigger quite a worsening of my MND, which is doing that well enough without any help!
    Dina


    Trying to keep positive, but not always managing.

  8. #38
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    Hi Dina,

    So sorry you've had such an awful experience with your carer... It must have been difficult to stay calm as someone not telling the truth is so infuriating.

    I know getting upset and stressed is bad for us but we are only human and we are bound to have a meltdown sometimes. No one can be expected to stay cheerful and positive all the time and maybe bottling our feelings up is not good for us either.

    For me, it is sometimes a small realisation or thought that sets me off but I think its probably really due go an accumulation of things andI usually feel a little more upbeat next day.

    Take Care and sending you big hugs , Hope tomorrow is a better day.
    Love Debbie x

  9. #39
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    Hi Dina
    I hope you are ok I have been having lots of meltdowns lately. I can't hold back the tears sometimes. My husband keeps saying take one day at a time. But it is difficult.
    Sheila x

  10. #40
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    sorry you had a bad time with carer

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