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    #46
    I don't want to sound depressing but I really think that i haven't got much longer. I cant be off my nippy for long. I told my husband but he just says we'll see. I just want him to prepare our sons so it won't be a shock. I need to get finances in order too as i do all that side of things. So worried and feel so bloody useless i cant get things sorted.

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      #47
      Pink, I am so, so sorry you're in this very difficult situation.

      If you really want to know, you need to have an honest chat with your Doctor or a Nurse.

      Big, big hug.

      Love Ellie.
      ​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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        #48
        Dear Pink,

        I'm thinking of you and sending you lots of love and hugs. You are a wonderful, kind, and caring lady with a heart of gold xx

        I feel so sad and am sorry that your health might have got worse. Please ask for painkilling medication if you need it, especially as you have a painful arm and shoulder. I don't like to think of you suffering, emotionally or physically. I hope the nurses are making sure that you are as comfortable as possible. Tell the nurses from me that you should be treated like a princess (our wonderful Princess Pinkelle!) and you should be pampered as much as possible!

        Please don't worry about the finances - I'm sure your husband can sort them out and ask you questions if he needs to. Anxiety is not good for us and so please try to relax and rest as much as possible.

        Sending you love and a million hugs,
        Kayleigh x

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          #49
          I am too sending you lots of love and hugs, brave lady !

          Thinking about you this evening, Pink and hoping you are comfortable.

          Lots of love, Debbie x

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            #50
            I am thinking of you pink and sending you lots of hugs and I hope you feel better soon.

            Love Sheila x

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              #51
              Wishing you much love, comfort, support, and peace of mind Pink.

              Hugs CC xox

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                #52
                thinking of you Pink xxx

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                  #53
                  Hello Pink,

                  I am so sad having read your last post but I hope you are not in any pain. I understand how you might feel about sorting out finances but please concentrate on trying to put your mind in the right place and enjoying whatever time you have with loved ones.

                  I will be thinking of you over the next few days and I pray you are comfortable.

                  Love and hugs to you xx.

                  Barry
                  I’m going to do this even if it kills me!

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                    #54
                    Dear Pink (I hope I'm not being too familiar)

                    I have only been a member on here for a short time but I want to send you my best wishes as you are having such a difficult time. I imagine there are all sorts going through your mind but I hope you find a way of putting the worries aside so that your anxiety is lessened, allowing you to spend time with those you love most.
                    Dina

                    Trying to keep positive, but not always managing.

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                      #55
                      Thinking of you Pink and hoping that the nurses are making sure you are pain-free and very comfortable. I hope you are feeling a bit better.

                      Love
                      Kayleigh xx

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                        #56
                        Sorry to hear you are having such a tough time. My husband recently got CHC awarded. He got severe for breathing because although he won't wear it at night he should be using NIV and also for pain as it is difficult to control. Fingers crossed you have got it but if they refused you perhaps I could offer some help. I looked at the criteria and documented how my husband was affected in each area very thoroughly and this was used as evidence for the assessment. Sorry you didn't make the wedding, but great that the hospice could help out. I know you feel dreadful at the moment but chest infections can make even the healthiest person feel awful, so hopefully you will recover soon.

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                          #57
                          Now have a chest infection again. ve got chct, all we are waiting for is putting 24hour care before i can come home.very fed up now.

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                            #58
                            Oh dear. Hope that your chest infection clears quickly with the appropriate treatment Pink.' Take care, Lynne
                            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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                              #59
                              Great to hear your CHC has been granted Pink.

                              Big, big hug.

                              Love Ellie.
                              ​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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                                #60
                                Dear Pink, I hope you get well soon. And you can come home.
                                Love Sheila.

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