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Thread: So tired

  1. #41
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    gud 2 no u r mngng of a srts. 12 crers is no gud. u end up hvng 2 train al t tme. c hw it gos 4 nw but DP may b a bttr optn.

    mi crrer frm salford hs introed mi 2 dis nw lngo lrk. I typ lot fstr n it is fun dcdng. she stl gts lots o pnchs of mi aft fud etc. got 2 kep em on toes. dnt u tink al 1 way. she bulys mi 2. I pour wtr ovr ur ed n wsh don, she sys. frm slfrd u c.

    luv g
    Copyright Graham

  2. #42
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    Hi Terry.

    Hope you are doing well now. I understand your situation. For you the best choice is to stop struggling and try to keep your mind happy and clear from bad thoughts. I know it's complicated. But life is life. Remember it.

  3. #43
    Forum Member Terry's Avatar
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    Hi Barry;

    I do still get out to Costa but not as often.

    Hi Graham, you're have to translate your post, i could not follow it.

    Hi Myrtie; it's more my wife I'm concerned about. We had the conveen nurse come out as well in the first week.

    A lovely lady who has changed suppliers since we last saw her 8 years ago. Anyway we have had trouble with all of the leg bags and the night bags. Just another problem that everyone must have with this make. We had some out of date bags and they drain straight away. The nurse is going back to see if we can get a different make.

    Why do they supply disabled people with things that "Are not fit for purpose".

    Love Terry

  4. #44
    Forum Member Barry52's Avatar
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    Quote Originally Posted by Graham View Post
    gud 2 no u r mngng of a srts. 12 crers is no gud. u end up hvng 2 train al t tme. c hw it gos 4 nw but DP may b a bttr optn.

    mi crrer frm salford hs introed mi 2 dis nw lngo lrk. I typ lot fstr n it is fun dcdng. she stl gts lots o pnchs of mi aft fud etc. got 2 kep em on toes. dnt u tink al 1 way. she bulys mi 2. I pour wtr ovr ur ed n wsh don, she sys. frm slfrd u c.

    luv g
    Hi Graham,

    I don’t know if it’s how my brain works or the effects of losing my cognitive power but I can translate your message. However I have decided to stick with standard typing as I find the word prediction on my iPad saves time.

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

  5. #45
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Terry View Post
    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.

    I know, my lovely, I know it’s a right royal pain in the bum (yes, pun intended) but it does need to be done - short-term pain for long-term gain and all that - and I‘ve had a fair amount of eye rolling and ginormous sighs directed at me during the try out times. However, once I found the right mattress and cushion, I was more comfortable and consequently needed less looking after.


    Your nurse has access to lots more stuff, not necessarily at 2hrs notice, but can get more specialised/appropriate mattresses, cushions etc. - don’t give up please ! How adjustable is the mattress you got? Weight or firmness adjustable? Circulation interval adjustable?


    I am absolutely flummoxed / appalled that they gave you a mains operated wheelchair cushion, obviously not suitable for your lifestyle Ask for a good Roho cushion, maybe the dual valve one or a contoured one.


    I am sorry for being so bossy, it infuriates me when we are given unsuitable equipment. I also know that you and your wife are exhausted and it is easier to put up & shut up, but you deserve more Terry.


    I wish I could go over and fight your corner


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

  6. #46
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    hi barry,

    it taks 4evr ritng smpl stuf 4 me nw. 4 al t tek in t wrld, stil cnt hlp pwmnd. tht is y I am devng my own care app.

    hi terry,

    hope things are improving, you need to sort out good carers with your agency and think about extra private care. I found private is best.

    luv g
    Copyright Graham

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