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    Fed up

    Here we go again. Back in hospice due to another chest infection. Been here since Thursday. Got to the point where i couldnt be detached from my nippy. I only usually wear it at night but managed couple of periods of 20mins today. The dr said my chest sounds clealr now so am i to presume this is to be normal from now on? They are lovely in here but my ongoing coccyx pain has got worse since being in here. They cant get me comfy and I realise now what a good job my carers do getting me just right. As my speech is so poor and im wearing a mask its so frustrating on both sides. Since being in here ive also come to realise that i need full time carers. I had an assessment for chc last week but im not holding out much hope.
    My sons wedding is next Saturday and im not very hopeful of getting to it. I need my mnd friends at the moment. Perhaps i need some kick ass to pull myself together but to say im depressed is an understatement. I appreciate you are all going through tough times xx

    #2
    Oh no Pink!! Ever so sorry to hear about your chest infection. I hope you feel better soon. I am sure others will be along shortly to give you better advice than I can. I know you have been talking about your son's wedding but if you can't attend I am sure he will understand. You have every right to feel depressed!! I had a right old melt down last night. Cried and cried and cried. I see you are in Weymouth! lovely place and beach. I am in Somerset so quite near to you. I have to pop out now, and try and do a bit of shopping.
    Will try and pop back later.
    Sheila x

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      #3
      Hi Pink,

      I am so very sorry for this situation. I have no magic words, unfortunately but I am thinking about you , rooting for you and sending you massive virtual hugs.

      Your son's wedding must be totally on your mind and I really really hope you get there. If you dont make it because you are unwell it really is NOT your fault and the love you have for your boy will be there, at the wedding. You dont need to kick ass and pull yourself together because with MND that is impossible.

      Thinking about you tonight and hoping tomorrow is a little better for you.
      Love Debbie xx

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        #4
        I am so sorry you're back in the hospice with a chest infection Pink, what rotten timing I can't imagine how awfully hard missing your son's wedding would be but please don't write it off just yet...

        If your chest is clear, that's good news.

        You won't necessarily be on the Nippy as much when you've recovered fully from the infection, have finished the antibiotic and have less coccyx pain.

        Are you breathless when you're off the Nippy? Or how do you feel? What are your O2 Sats levels?

        I wonder are you taking any new meds or have increased the dose of any?

        I hope CHC is approved for you, and fast. The hospice might help you appeal if it's refused.

        Big, big hug.

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

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          #5
          oh no poor you. i hope you feel better soon and manage the wedding xx

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            #6
            Hi Pink, sorry to hear you are back in a hospice.

            I hope you are able to get to your son’s wedding.

            My son was married last month.......... in Austria. Thanks to my MND, my wife and I were unable to attend which was obviously really disappointing for us all especially as he is our only son. However, thanks to technology, we were able to enjoy some of the day with them.

            Immediately following the ceremony they returned to their home and called us on FaceTime. My wife and I were sitting awaiting their call, me in my best suit, my wife in a posh frock and a bottle of champagne ready to toast them. We got to see and chat to them and their friends and sip champagne. Later in the day at their reception my son video called via WhatsApp and we got to see them cutting the cake and could say ‘hi’ to the other guests. We were sent photos and videos from their friends as soon as they had taken them.

            So we were able to enjoy their day better than we thought possible. I felt so happy and proud that day.

            In a few weeks time, when the weather is warmer they are coming to the UK along with some of his wife’s Austrian family to have a celebration party with us.

            So, as sad as we were at not being able to be there with them, we did get to enjoy the day.

            Love Andy x
            Sporadic MND/ALS - Limb onset - Diagnosed May 2016

            Today is the tomorrow I feared yesterday

            Comment


              #7
              Hi Andy,
              I am sorry you didn't get to go to your son's wedding. But it sounds like you and your wife really enjoyed his big day, like you said thanks to technology. I bet you are really looking forward to seeing them all soon. What a lovely story I really enjoyed reading that.
              Take care
              Sheila x

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                #8
                Dear Pink,

                I'm so sorry that you are going through a particularly tough time. You have every right to feel fed up about your situation and I really do hope you are able to go to your son's wedding.

                I hope you continue to make a good recovery from the chest infection. It sounds like you could do with a visit from your usual carers, to make you more comfortable like they do at home!

                Hopefully, you will be well enough to return home very soon and your CHC application will be approved.

                Thinking of you and sending you lots of love and hugs.

                Kayleigh x

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                  #9
                  Hello Pink..just wanted to wish you a speedy recovery from your chest infection (it’s been on the rampage in our household too!) and that I sincerely hope you can make your son’s wedding next week. If not, AndyB’s post was very encouraging and perhaps you can do likewise and hook up via FaceTime/Skype so as not to miss out. Fingers crossed for you.
                  With love,
                  Boiler xxx

                  Comment


                    #10
                    Hi Pink,

                    I’m sorry to hear that you have had another chest infection and spent more time in the hospice. I’m sure that you will qualify for CHC since your need for full time care must be apparent to the assessors.

                    I do hope you enjoy your son’s wedding and that all the logistics work well for you.

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

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                      #11
                      Hi Pink,
                      Thinking about you today and hoping you are feeling a bit better. Hopefully you've had some family or friends visiting you today and they have cheered you up a little.
                      Sending you love and huge hugs,
                      Kayleigh xx

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                        #12
                        Thanks everyone. Feel a bit better today. The hospice are one step ahead with video streaming the wedding. They told me today they are going to set it up for me a last resort.

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                          #13
                          Hi Pink
                          Glad you are feeling a bit better. That is great news that the hospice would video stream your son's wedding, if need be. Thinking of you
                          Sheila

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                            #14
                            Glad you are feeling a lot better today Pink xx

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                              #15
                              Likewise Pink, I am glad you're feeling a bit better - hope you continue gaining energy day by day.

                              Big, big hug.

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

                              Comment

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