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    Keeping upbeat

    Good morning,

    Do others find it hard to keep upbeat some days.?

    ?I sometimes plan the day but then feel overwhelmed with tiredness or it feels like an effort to engage.Other days I do better.I spend a fair bit of time lying on my bed reading, watching tv, etc.I feel more comfortable on the bed although I do sit in an armchair or wheelchair.I nap once a day for an hour.

    I know I am very blessed having my husband who is a willing carer and my sister in law too who helps several days a week.
    I pray, watch mass on line,email friends etc.we go out for rides and a breath of fresh air.

    I know many members on here are physically more challenged than I currently am experiencing or live alone in difficult circumstances.
    Pre MND I always had things to look forward to or was planning weekends away or theatre trips etc.Too a point I still plan to see friends or go out but more locally.

    I sometimes need to shed a few tears and a bit of self talk then I can usually shake out of being a bit flat.
    I woke up feeling flat this morning .I said my prayers, had a cup of tea, looked out at the sunshine and told myself to get on with “ one day at a time”.A friend is coming this afternoon and my granddaughter is coming after work.
    Just wanted to share my mood and then change it for more positive thoughts .

    Hope you have the best day you can.
    best wishes
    Mary xx



    #2
    Mary C good strategy for lifting your mood Mary. I hope that you have a nice time with your visiting family later.

    I’ve been in a ‘worried’ place for some time now. I can’t get my head around reading again and I was an avid reader. I count my blessings though. Despite my chewing and swallowing issues I’m still able to eat smooth food and take some pills with yoghurt. Capsules I can usually swallow. I’m still using my walker to get from my RR chair to my wheelchair which I’m thankful for. I also have a willing husband who’s taking on more and more of my personal care, although today I’m still able to go to the loo independently, don’t know how long that’s going to be. It probably depends on my dodgy hands.

    Take care, Lynne xx
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.

    Comment


      #3
      Yes very much. I am upbeat most of the time but then some days like today I got up and cried. Then I got ready for my mom visiting. I never like my mom seeing me upset. It broke my heart the day I had to break the news to her and I vowed I would try hard to make her worry less.

      I feel alot better now. I think we deserve the odd tear. It sometimes clears the anxiety for me Mary x
      Diagnosed May 2021 bulbar onset als.

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        #4
        Yes, I find when my son and daughter both in their early forties get tearful then I start to cry too.Some days feel so long.I get wretching episodes which I think are due to anxiety as I never get sick.
        I try and not worry our kids but they can see me deteriorating in so many ways.They ring daily and often it’s difficult depending on my voice strength as to how long I can talk for.We have honest chats when needed and we all know it seems the longer I live the worse I will get.
        Other days we have good visits when we laugh a lot .
        Lynne K …..my dependence in toilet came on gradually over a few months.Weightbearing ability stopped and then right hand got worse so can’t pull clothes down without help.Bio bidet toilet helps as can still operate buttons.
        Had a nap and woke up happier😂…
        Shelley…Thanks for sharing how you feel .
        Best wishes
        Mary x

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          #5
          Mary C sounds good that you can manage the bio bidet toilet xx
          ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

          I'm staying positive and taking each day as it comes.

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            #6
            Originally posted by shelly21 View Post
            I think we deserve the odd tear. It sometimes clears the anxiety for me
            Nail on the head shelly21


            Crying is a safety valve - a good cry releases endorphins, resets emotions and can lessen anxiety so, all in all, a very worthwhile and necessary function and one not to shy away from.

            If pressure is building, open the safety valve and release those endorphins 👍👍😘😘
            ​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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              #7
              I think we are all human and given what we are facing of course we will have 'down' days. When grief and loss overwhelm us.

              However other days when we find simple joy in a small thing...a book...a kind word....cosy blanket....whatever...

              Here's hoping we can always have the small joys even on the darkest days. Peace & love 🙏
              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                #8
                Thanks for starting this thread Mary C and to others for their contributions.

                I think we all do really well to stay upbeat but we're only human and we can't stay positive all the time. Im not sure if its because of Christmas, new year or covid but I have felt emotional and vulnerable recently. I tend not to post when I'm down which is silly of me because that's when we need support most.

                Onwards and upwards ! Its best not to look back or try to imagine the future. I know I'm so lucky with family and friends support so we should live in the now! Nobody know whats round the corner so I'm going to try make the most of every single day.

                Love and hugs to all of us xx 😘 🤗🤗💕

                Comment


                  #9
                  Everyone here is very human, the ups and downs and, as you say Mary, sometimes waking up and feeling flat, frustrated, even hopeless, and the next day much more upbeat. I have terrible walking/leg weakness andpoor balance, but can still hold on to things to get around house. My upper body is still strong after 9-10 years, so lucky, and this was an especially lucky factor when I had to have recent cancer surgery. I've now taken on two things, I had no hesitation about wanting to have treatment, even though I'm pretty tired atm. And the way I cope, like you, is to focus on other things...for me, animal rescue/equality/fighting cruelty/ birdwatching. Busy mind still😊 Hugs xx

                  Comment


                    #10
                    I wasn’t sure whether to post this morning as I said previously today I woke up feeling flat.
                    Physically I didn’t feel well this morning ,breathing a little laboured, Crackling noises for days around nasal area,voice croakier etc. throat gurgling etc.Diaphragm weakening so getting a bit stooped.

                    A close friend came and I enjoyed catching up.We have been friends for 35 years so comfortable sharing our feelings and opinions on any subjects.She wanted to talk about how my diagnosis impacts on her and how she thinks more about her beliefs etc.We talked about death, funerals etc. Sounds morbid but it felt good to share even though we have different views on some things,

                    We laughed together at our naivety when we worked as carers when our children were young .We both had a passion for working with older adults and looked back fondly recalling many of the people we had cared for to the best of our ability.

                    Later my 20 yr old granddaughter came and she shared her excitement as she is buying her first house.She shared her news and we ended up laughing a lot.
                    We talked about her work, her dog who walked over my newly laundered cream bedding😂and chatted and laughed. She is fully aware of my situation and encourages me to practice on predictable 6 App in case I need it soon.I am proud of her as she keeps telling me she wants to walk the journey with me.

                    So despite feeling flat this morning and a couple of negative thoughts throughout the day I have enjoyed the blessings of this day.
                    Steve also said he enjoyed the day and potted some bulbs in the greenhouse and pottered about outdoors..

                    Pjs on, reading for a bit , a bit of TV soon ,prayers and hopefully a decent sleep.

                    Very grateful to my husband, friend and granddaughter who brought such pleasure to the day after I starting off feeling down.
                    Best wishes
                    Mary x


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                      #11
                      Mary C a lovely day for you after all 🙏😘
                      Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

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                        #12
                        Mary C that’s smashing Mary xx
                        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                        I'm staying positive and taking each day as it comes.

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                          #13
                          Thank you for your post @MaryC. As my breathing deteriorated markedly and I couldn’t sleep in my bed I’ve been very down. Quality of sleep seems crucial to coping or not coping with the day. I think I need to get some counselling, I haven’t felt the need until recently when my physical deterioration has been more rapid and I have got much more tearful and less resilient.
                          Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

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                            #14
                            Hi Rosemary, It makes sense that the more physical decline we experience the lower we are likely to feel low in mood.
                            Think you were getting a NIV to help breathing.Is the NIV helping you get some sleep.?
                            best wishes
                            Mary

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                              #15
                              I think counselling is a great idea for any of us.

                              I do also find benefits from mindfulness...it works for me. Headspace App is good...there's also episodes on Netflix.

                              There's a good book Mindfulness in Eight Weeks by Michael Chaskalson. With guided practices.

                              😘
                              Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​

                              Comment

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