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Thread: So tired

  1. #31
    Forum Member Kayleigh's Avatar
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    Dear Terry,

    You are a brave WARRIER - not a wimp! Every day you summon up enough courage and bravery to deal with all the tough challenges that life throws at you, as well as being supportive towards others affected by MND.

    I'm sorry that you feel down and I'm sad that you feel like you are a wimp.

    When we lose our ability to do things it doesn't make us a wimp if we find it difficult come to terms with how these losses can change and impact everyday lives.

    You have been coping with MND for many years and you always put up a very brave fight. You are entitled to have a rant and a meltdown about things, just like we all are, especially when things are particularly tough and the decline in our health can seem so relentless.

    You are being as brave and as strong as any man or woman could be - so please don't think of yourself as a wlmp or needing to man up.

    I am glad you were able to get out and about yesterday. I hope you feel much better today.

    Love
    Kayleigh x
    Last edited by Kayleigh; 30th January 2020 at 11:11.

  2. #32
    ccinjersey
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    To Terry and all members here that wake up each day to face the constant changes, and challenges this illness brings to you and those that love you the most

    No one is a wimp that lives each day with MND. You have the choice how to cope and manage this illness that's best for you, and you choose to come here each day and give support, compassion, encouragement and understanding to one another, and new members who are just as scared, all while enduring this illness yourself. That takes strength, and bravery to do so.

    Much Love
    CCxox

  3. #33
    Forum Member Lynne K's Avatar
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    Thanks CC, well said, 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.

  4. #34
    Forum Member Ellie's Avatar
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    Yeah Sweetie, what a wimp you are though it's completely understandable that you're feeling as you do, given the last 8-ish weeks you've had - you must be utterly exhausted physically & mentally. It must be very hard for you having such slow progress, to be at a stage where you can see depency looming, I'm sorry you feel you're nearing this time.

    You in a nursing home is very much last resort option and you are a long way off the last resort option. If you want to stay at home, and your wifeis OK having carers around, that should be your goal.

    The carers you have, are they funded by you?

    Can your hospice pals start the CHC application process or help you get (more?) carer hours from the council?

    Really hope things will look a bit brighter once that damn back pain is under control

    Sending you a giant, warm, hairy hug.

    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
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    Oh Terry,

    You are certainly not a wimp ! You have brought so much warmth, advice and encouragement to the forum over the years. ( and very funny humour !)

    I am not surprised you are fed up, putting it politely! I can see too how you are worried for your wife and I really hope you can get carers soon so you can enjoy your home comforts together.

    Lots of love and hugs to you,
    Debbie xxx

  6. #36
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    hi terry,

    sorry u r struggling mate.

    when u go thru the changes it is VERY frightening. I remember.

    I know ur wife doesn't want carers in the house but u need them now.

    suggest psychological support for ur wife or maybe mnda can help.

    in old money, I would tell ur wife, 'don't be selfish'. u have as much right 2 the house as she.

    soz 2 b blunt.

    love graham
    Copyright Graham

  7. #37
    Forum Member Ellie's Avatar
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    Hi Terry,

    I hope you are sleeping a bit better the past few nights.

    Are the carers working out OK?

    Thinking of you.

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

  8. #38
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    Hi Terry,

    I've been thinking about you lots too, recently. I hope you're comfortable and in less pain. I also hope you've been able to sort carers to make life easier for you and your wife.

    Love and hugs,
    Debbie x

  9. #39
    Forum Member Terry's Avatar
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    Thanks Chimp, Debbie and Graham,

    It's been so hard for us both, we do have carers but twelve different ones in two weeks. I have a little sore on my bum but it seems to be a abrasion rather than a pressure sore and after a week it's looking a nice bottom according to the district nurse.

    She got me a alternating air mattress, wheelchair alternating cushion and a Repose reclining chair cushion delivered Saturday afternoon and she only saw me in the morning.

    Unfortunately I did not get on with the mattress due to my back and the wheelchair seat is mains powered.

    Trouble is that we spend so much time and me in pain trying things, it has been none stop for my wife.

    Love Terry

  10. #40
    Forum Member Barry52's Avatar
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    Hi Terry,

    You appear to have a very responsive district nurse but I understand that you and your wife would not appreciate the multiple changes in care team. I hope you can get relief from the back pain and I guess a lot is to do with posture. As we all spend more time sitting or lying due to MND we suffer these issues. I sit on a sheepskin rug and I find it helps.

    Whatever the problems you are experiencing I’m sure you are happier at home but I appreciate how stressful it is for you and your wife. Keep up your cheerful posts and remember you can buy Costa coffee for home.

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

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