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    #31
    Dear Terry,

    You are a brave WARRIER - not a wimp! Every day you summon up enough courage and bravery to deal with all the tough challenges that life throws at you, as well as being supportive towards others affected by MND.

    I'm sorry that you feel down and I'm sad that you feel like you are a wimp.

    When we lose our ability to do things it doesn't make us a wimp if we find it difficult come to terms with how these losses can change and impact everyday lives.

    You have been coping with MND for many years and you always put up a very brave fight. You are entitled to have a rant and a meltdown about things, just like we all are, especially when things are particularly tough and the decline in our health can seem so relentless.

    You are being as brave and as strong as any man or woman could be - so please don't think of yourself as a wlmp or needing to man up.

    I am glad you were able to get out and about yesterday. I hope you feel much better today.

    Love
    Kayleigh x
    Last edited by Kayleigh; 30 January 2020, 12:11.

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      #32
      To Terry and all members here that wake up each day to face the constant changes, and challenges this illness brings to you and those that love you the most

      No one is a wimp that lives each day with MND. You have the choice how to cope and manage this illness that's best for you, and you choose to come here each day and give support, compassion, encouragement and understanding to one another, and new members who are just as scared, all while enduring this illness yourself. That takes strength, and bravery to do so.

      Much Love
      CCxox

      Comment


        #33
        Thanks CC, well said, Lynne x
        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.

        Comment


          #34
          Yeah Sweetie, what a wimp you are though it's completely understandable that you're feeling as you do, given the last 8-ish weeks you've had - you must be utterly exhausted physically & mentally. It must be very hard for you having such slow progress, to be at a stage where you can see depency looming, I'm sorry you feel you're nearing this time.

          You in a nursing home is very much last resort option and you are a long way off the last resort option. If you want to stay at home, and your wifeis OK having carers around, that should be your goal.

          The carers you have, are they funded by you?

          Can your hospice pals start the CHC application process or help you get (more?) carer hours from the council?

          Really hope things will look a bit brighter once that damn back pain is under control

          Sending you a giant, warm, hairy 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


            #35
            Oh Terry,

            You are certainly not a wimp ! You have brought so much warmth, advice and encouragement to the forum over the years. ( and very funny humour !)

            I am not surprised you are fed up, putting it politely! I can see too how you are worried for your wife and I really hope you can get carers soon so you can enjoy your home comforts together.

            Lots of love and hugs to you,
            Debbie xxx

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              #36
              hi terry,

              sorry u r struggling mate.

              when u go thru the changes it is VERY frightening. I remember.

              I know ur wife doesn't want carers in the house but u need them now.

              suggest psychological support for ur wife or maybe mnda can help.

              in old money, I would tell ur wife, 'don't be selfish'. u have as much right 2 the house as she.

              soz 2 b blunt.

              love graham
              Copyright Graham

              Comment


                #37
                Hi Terry,

                I hope you are sleeping a bit better the past few nights.

                Are the carers working out OK?

                Thinking of you.

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

                Comment


                  #38
                  Hi Terry,

                  I've been thinking about you lots too, recently. I hope you're comfortable and in less pain. I also hope you've been able to sort carers to make life easier for you and your wife.

                  Love and hugs,
                  Debbie x

                  Comment


                    #39
                    Thanks Chimp, Debbie and Graham,

                    It's been so hard for us both, we do have carers but twelve different ones in two weeks. I have a little sore on my bum but it seems to be a abrasion rather than a pressure sore and after a week it's looking a nice bottom according to the district nurse.

                    She got me a alternating air mattress, wheelchair alternating cushion and a Repose reclining chair cushion delivered Saturday afternoon and she only saw me in the morning.

                    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.

                    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


                      #40
                      Hi Terry,

                      You appear to have a very responsive district nurse but I understand that you and your wife would not appreciate the multiple changes in care team. I hope you can get relief from the back pain and I guess a lot is to do with posture. As we all spend more time sitting or lying due to MND we suffer these issues. I sit on a sheepskin rug and I find it helps.

                      Whatever the problems you are experiencing I’m sure you are happier at home but I appreciate how stressful it is for you and your wife. Keep up your cheerful posts and remember you can buy Costa coffee for home.

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

                      Comment


                        #41
                        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

                        Comment


                          #42
                          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.

                          Comment


                            #43
                            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
                            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


                              #44
                              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
                              I’m going to do this even if it kills me!

                              Comment


                                #45
                                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.

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