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    #46
    Great minds, eh GaryM It'll be mind-over-matter now not to think of Pavlov when you see the inhaler 😃 At least you can explain to Louise why you laugh at such times.

    I'm way too young to know who Bernie Winters is 😉
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

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      #47
      Crying is exhausting but today I had a wee sesh. Probably more to do with lack of sleep building up these last couple of weeks. Usually quite matter of fact when dealing with appointments and my partner's daily care but the odd day every few weeks I have a moment. My partner has always been more in control of his emotions, don't get me wrong we've had a sob together when we were in the testing stages and we just knew exactly what it was. I do try not get too teary Infront of him, but when you got to cry, you just got to cry.

      I remember nearer the time of diagnosis I had a bank appointment and the sales advisor started asking if I had thought about looking into house savings/mortgage funds or something like that for the future and with that word 'future', i just broke down and I had to explain that this isn't something I'll ever get with my current partner and it broke my heart. I think I must've given him a fright as he then toned down all the sales pitches and just carried out what I had asked him to do in the first place. I know the guy was just doing his job, so pretty unfortunate when I showed up.

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        #48
        Tess One if the problems with being male is that it is built into us not to cry which is fine except we tend to shout instead which to my eternal shame is what I did when like you say the pressures built up. I wish I’d cried now.

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          #49
          No Phil I think it's not just men. I have found I'm having difficulty crying. I wish I could. I just want to shout and I feel so angry. Things just feel so hopeless. Like today. A long drive leaving the house at 7. Doctor late. Off to next appointment. Made to feel like I'm not doing a good job of feeding my husband. He doesn't even volunteer a kind word. Then I have to get us something to eat in the supermarket. Drive home then unpack the shopping and put it away. I'm hungry, tired and exhausted and feel useless.
          Stephen is supposed to have 3 months physio. They used to pick him up and drop him back home. He'd be gone about 3-4 hours. How is he supposed to eat? I don't agree with overnight feeding as his bed looks like something from the exorsist. I am so fed up with everything. 😢

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            #50
            Okay Denise, firstly you will not be doing a bad job of feeding Stephen. How do I know well because he has survived your cooking for the past 40 odd years so get that out of your mind.
            Secondly we all get those feelings of inadequacy, anger and either crying or shouty. I think it goes with the role you are performing. Just like those who have been struck down with this evil disease can’t help laughing or crying Carers can’t help those feelings.
            Thirdly you are doing all this in a country where you don’t speak the language and have absolutely no one on hand to help so tell me how is that inadequate.
            Fourthly unless you are doing something for Stephen stop what you are doing. Put the kettle on, get a couple of biscuits and go out in the garden and shout at the plants.

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              #51
              Tess, Phil, Denise and all carers.

              Being a carer for someone with MND is heartbreaking. Not only have you lost your hopes and dreams for the future but you have to watch the person you love struggling with this disease.

              Please never feel guilty for the incredible job you are doing ( or have done , Phil and furthermore you are stil supporting us ) or talk about shame. My husband has to look away when I'm struggling or leave the room and I know he's hiding his feelings. Crying or shouting in frustration is fine. You are only human and you are coping with what is an impossible situation, with no happy ending.

              Big hugs and admiration to you,
              Love Debbie x

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                #52
                Deb thank you for your lovely words

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                  #53
                  Thanks deb and Phil. It just feels like you're not doing enough. It's like being at the seaside digging a hole and it keeps filling up with sand.
                  I'm going to have to hit the gin and cranberry juice minus the gin 😞

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                    #54
                    I really take my hat off to you carers, what you do is amazing, but must have a big toll on you as well. Take care of yourselves and love to you all x
                    Diagnosed July 2020, ALS bulbar onset.

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                      #55
                      Thanks heather that was really appreciated. 😘

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                        #56
                        Originally posted by Heather R View Post
                        I really take my hat off to you carers, what you do is amazing, but must have a big toll on you as well. Take care of yourselves and love to you all x
                        Thank you Heather. This thing is crap for everyone it touches

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