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Thread: Positive strategies & inspiration needed

  1. #11
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    Thank you everyone for you encouraging words and very useful suggestions (great ideas, Broostine93 & Ellie, thanks!). And apologies for not having responded sooner but my worst nightmare happened today.

    Sue had gone out - I’d already been to the loo and the carers were due in just a couple of hours so I was relaxing in my chair, and did some meditation, planning to pick up on Grace & Frankie - which I’ve watched some of previously but not for a while. Then I felt some tell-tale gurgles in my tummy.... I’ll spare you the details but suffice to say the very worst happened (we’re not talking #1...), and I had to sit in it for 45 minutes before the carers arrived- and to add to things, one of them was someone I hadn’t met before!

    Mortified doesn’t come close.

    Not for the first time, just as I manage to pick myself up, I have a set-back.

    But...looking on the positive side, it was just an embarrassment and inconvenience after all, nothing painful or life-threatening - which so many of you on here are facing. So I’m counting my blessings and at least now my worst nightmare has happened...and I survived!!

    Not only that, I’m armed with some great tips as to how to cheer myself up. I know I have to try to enjoy every day if I can because I’m blessed with a very happy marriage as well as amazing friends and family , who are really coming through for me. Sue and I have only been together for 6 years but that’s better than nothing and we’re so grateful for any time we have together. And...our WAV is being delivered next Tuesday so I’ll be able to get out and about, especially going on walks with my much loved dogs. I’m having trouble bonding with now I can’t walk, feed or talk to them - I even struggle to reach them now to stroke, let alone cwtch, which breaks my heart.

    To answer a couple of your questions, the hoists I have are ceiling tract ones, with slings. But I’m not a small woman and the OT said I’m a double hander (charming!). We’ve also tried 2 types of sit to stand ones (Stedys) but they don’t work for me either. And I’m not drinking enough either - I enjoy water (tho I tend to have ribena), but can only take tiny sips at a time and going to the loo is such an effort. But I know I need to address that. I can have fluids through my peg of course, but that tends to make my stomach even more upset. Seeing the nutritionist (again) tomorrow and will discuss it with her - again again! (I don’t think a ladies urinal bottle would work for me unfortunately, Debbie, as I don’t have much strength in my hands and arms.)

    I’ll definitely check that blog out, thanks Ellie. As for the caravan, Sheila - yes I’m gutted about it - still processing it to be honest, it’s just too heartbreaking to think about too much at the moment.

    Thanks again everyone for indulging my self pity once again. I’m giving myself a stern talking to and am determined to be more positive - & like you say Terry, try not to look too far ahead.

    And I want to be there for you guys when you need it too. This is such a wonderful forum. Xx

  2. #12
    Forum Member Lynne K's Avatar
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    Sheila, Sarah and Terry. I wrote a long post to all of you about an hour ago but because of my wayward fingers I accidentally deleted it, instead of posting it. I was so disheartened that I came off site and didn't want to type it all again. I wanted you all, at the least, to know that I'm thinking of you. Lynne
    Last edited by Lynne K; 4th February 2020 at 19:20.
    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.

  3. #13
    Forum Member Ellie's Avatar
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    Yeah I know that feeling of utter mortification and self-loathing having laid in the contents of my bowels for 2 hours in bed one morning Hubby & children had left for work and school as usual when that dreaded gurgling started and there was absolutely nothing I could do about it....

    My carers came in to get me up and were just wonderful - I was sobbing with shame - and they were so matter of fact, but sensitive, about what had happened that I relaxed a bit.

    I had overflow diarrhoea due to constipation and boy did I learn a lesson - that's why I go on and on and on about staying on top of constipation

    So Sarah, you definitely are not alone !!

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

  4. #14
    Forum Member Ellie's Avatar
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    Oh Lynne that is so frustrating for you

    I tend to type in Word, then copy & paste into the reply box on the Forum. That way if my eyes go wayward and I mess up, I can click 'Undo' and text miraculous reappears. Not to mention autocorrect and capitalisation

    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. #15
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    Dear Sarah
    I don't think that this time of the year helps either because we are all stuck indoors too much x I do find that even ten minutes sat in the garden watching the birds and the dogs gives me a boost although sometimes by the time I have enough clothing on to keep me warm the sun has gone in ! Are you on any antidepressants? I take Citalopram and have done for 7 years and it really helps to level my mood.
    I know exactly how you feel about not being able to cuddle your dogs but sometimes I just lie my head on them and enjoy feeling them breathe.
    I sympathise about your accident but don't worry about it x I am sure that it has happened to us all and good carers won't make a fuss x
    it is so frustrating when your body lets you down
    Spring is coming and I for one can't wait to feel the sunshine x
    Keep talking and enjoy your dogs x I currently have three sausage dogs on my lap
    Much love Sarah x

  6. #16
    Forum Member Ellie's Avatar
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    My dog lies on my bed with me (thankfully not on that morning !!) and I don't even mind her often-stinky breath

    Sometimes one of my family takes my hand and helps me stroke her - bliss.

    3 sausage dogs on your lap Sarah slp - pure bliss.

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

  7. #17
    Forum Member Lynne K's Avatar
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    Quote Originally Posted by Ellie View Post
    Oh Lynne that is so frustrating for you

    I tend to type in Word, then copy & paste into the reply box on the Forum. That way if my eyes go wayward and I mess up, I can click 'Undo' and text miraculous reappears. Not to mention autocorrect and capitalisation

    Take care.
    Love Ellie.
    Ellie that's a great idea. I usually post from my phone but I think that I'll do so from my laptop in future so that I can do as you do as word is on my laptop and not my phone. 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.

  8. #18
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    Pure therapy in a little body Ellie x I am so lucky x

  9. #19
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    Hi Sarah,
    Sorry that happened to you, so far I have been ok. Sometimes my husband has got to get me to the toilet quick. So it is only a matter of time. But I have noticed my bladder is more leaky.
    On the subject of carers do we have to pay for them?. I expect it is means tested. I have never gone into it really.
    Lynne don't worry about the post you got rid off, I have done exactly the same thing, shaky fingers.
    Love Sheila x

  10. #20
    Forum Member Lynne K's Avatar
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    Thanks Sheila, you hit the nail on the head with my shaky fingers on my right hand. My left is not so bad but I'm right handed. I'm glad that you understood. It took some angst from me 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.

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