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    #16
    I was nearly in a nursing home today, Ellie;

    I was in so much pain last night getting into bed, slept OKish so live another day. Seen Doctor and he has given me codeen and referring me to a skeletoe physio specialist.

    Grandad should be taking me out for a while tomorrow, just hope it drys up.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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      #17
      Hi Ellie

      I am really fed up with it but I am more concerned about being on so much imodium every few hours every day but my GP (who is brilliant and comes to the house regularly ) and my dietitian who has been involved from the beginning both say that I have to stay on the high dose for two weeks and then gradually reduce the imodium and see what happens.
      If I am honest I think that I will be back to the beginning but at least at the moment I have no diarrhoea and oramorph is letting me sleep and I am getting stronger.
      I did watch the programme with Steph McGoververn and I am taking probiotics so maybe that may help.
      I have tried 5 different peg feeds and I don't think that it is food related.
      All rather frustrating but I am sure that we will get there !
      I hope that you are keeping well xx

      Love Sarah xx

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        #18
        Oh Terry, it breaks my heart that your back is so painful

        I hope you don't have to wait long for the physio and that, when you do get there, he/she knows what they're doing !!!

        Don't forget that Codeine will probably slow your bowels, so get in an extra box of Movicol

        Sending you a big hug and hope you get out with Grandad very soon.

        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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          #19
          Thanks for the update Sarah.

          Good to hear you're finally sleeping better and getting stronger and also people are keeping an eye on you!

          I am good, thanks for asking. There are signs of spring in the garden and it's not dark at 4.30pm any more - woohoo

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

          Comment


            #20
            Isn't it wonderful to see signs of spring and when the days start to drag out you know that you have nearly got winter behind you. Although I see that there may be snow on the moors tonight

            I hope that the early snowdrops survive

            Love Sarah x

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              #21
              Hi Terry

              Hope you can get the proper care you need, and quickly.

              Big hugs and much love sent your way xoxo

              Comment


                #22
                Hi Terry,

                I hope the painkillers the GP prescribed work well and you don't have to wait very long to have your first physio appointment.

                I hope you get a good nights sleep and hopefully you can have a pain-free trip out with Grandad tomorrow.
                I hope it won't be raining again tomorrow but if it is there's always Costa's!

                You always bring a ray of sunshine to the forum and I wish there was something I could do to brighten your day and take your pain away.

                Sending you lots of love and get well soon hugs. Please give Grandad a hug from me - but only if your back is up to it!

                Love
                Kayleigh x

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                  #23
                  Hi Terry,

                  I hope you are up to going out with “granddad” today. Beautiful sunrise here this morning and I expect it is the same in Suffolk. Enjoy your day and give my best wishes to Richard.

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

                  Comment


                    #24
                    I got my days mixed up which is just as well as I had a terrible night;

                    Hope tomorrow is nice and sunny as well.

                    Love Terry
                    TB once said that "The forum is still the best source for friendship and information."

                    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                    Comment


                      #25
                      Hi Terry,
                      I hope last night was a much better night for you and you managed to get some sleep.

                      Love,
                      Kayleigh x

                      Comment


                        #26
                        Yes, sleeped quite well and been out today. Have quite a lot of pain in neck and shoulders and my arm movements and strength is poor.

                        Can't see myself improving and see a nursing home very near. I don't think that could do a nursing home but hopefully I feel some strength and not so much pain.

                        Sorry, love Terry
                        TB once said that "The forum is still the best source for friendship and information."

                        It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                        Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                        Comment


                          #27
                          Terry, am I reading you correctly in that you may be going into a nursing home???

                          Glad you slept better and got out today.

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

                          Comment


                            #28
                            Hi Ellie,

                            I have been very affected by everything recently, so much so that I can see a daily decline in my abilities.

                            I will have to be feed soon as my fully functioning arms at the beginning of November work less and less.

                            I guess that I should man up but I don't think that my wife can cope with hoisting etc.

                            I don't plan to go into a nursing home but I don't think that I can take anymore.

                            What a wimp.

                            Love Terry
                            TB once said that "The forum is still the best source for friendship and information."

                            It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                            Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                            Comment


                              #29
                              Hi Terry,

                              You are not a wimp and you have been fighting this disease for over 8 years. I’m not surprised you are feeling down following your recent hospital stay. Please don’t give up yet as you have always been encouraging to other members here. We know from comments on this forum that care homes are ill equipped to deal with MND but I understand you are thinking about how your wife is coping.

                              Is it possible to get some care in your home? You may find this a better solution in the medium term.

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

                              Comment


                                #30
                                Good morning Terry

                                I'm sorry to hear you sounding so dispirited.

                                My two pennies worth is that modern floorstanding hoists are quite easy to work if you have the space and somebody is trained to use them - it does not take long.

                                I remember using one for my father-in-law who had Multiple Sclerosis and him laughing and chuckling as we swung him from his wheelchair into his shower and vice versa - he'd been a great aficionado of Ferris wheels et cetera in his youth
                                Warmly


                                Andy

                                ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
                                MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

                                "Things turn out the best for people who make the best of the way things turn out"

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