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    Moods

    Recently I have found my whole day hinges on how I get out of bed. Sad as it is it can lead to very dark thoughts. Atleast I have learnt not to inflict it on you lot but be aware that when I go you will get no heads up. ๐Ÿ˜‰๐Ÿ˜x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    #2
    Sometimes I wish I had something I could take it out on like boxing gloves and something to hit.

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      #3
      Hi Matthew ,I also have mornings when I wake up and think I am getting worse(Which of course I am) and let my imagination project into the โ€œWhat ifโ€ scenario.I usually have a brief pity party for one for a short time.Then for me I get up ,showered etc and read the Catholic Churches readings for the day and say a few prayers.
      That done,I feel I need to look at my blessings such as having a lot of family support and close friends support.
      This week I am drumming up signatures for the UK petition for funding MND.In A small way it makes me feel like I am trying to help others.I try and where I think I can offer something or a kind word to people on this forum who are like us going through their own MND journey with all that brings.
      We all have so many losses on this journey but I canโ€™t waste today over thinking what might happen.So today my simple plan is doing out for a wheelchair ride and enjoy looking at the spring flowers .I will read, watch TV ,message friends .Of course I am blessed to have my husband by my side.It canโ€™t be easy living alone and not being able to speak.
      Just caught on morning tv about voice banking..I did mine early after diagnosis.Is it worth looking at other communication methods Matthew??( I donโ€™t mean to be personal). There seems to be so much improvement in that area of communication.
      Hope you have a good day Matthew.Best wishes Mary.

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        #4
        My thoughts also churn. It's totally understandable mate x

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          #5
          At present I find writing on a boogie board easiest. ๐Ÿ˜x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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            #6
            You are not alone in the moods department Matthew.
            I sometimes wake up grumpy, other times I let her sleep a bit longer.
            Seriously, I have ups and downs, I think what is the point, I have nothing positive to look forward to, but at least I have my wife, or do I?
            We often have arguments as my mind is not disabled, but she treats me like it is sometimes.
            I often lay awake thinking about "what if I could", but if I did, I know my family would be devastated. It is so confusing as to what to do sometimes.
            Diagnosed 2nd Jan 2020
            Both arms/shoulders affected, left worse than right.
            Progressive Muscular Atrophy suspected

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              #7
              Hi Matthew,

              So sorry you're feeling low. Its really hard when you're in a dark place in the morning to overcome the mood. We are all different but I find if I've had a bad night with little sleep I feel
              In a low mood next day.

              It must be even harder if you live alone and lockdown makes it impossible to see friends.. I am generally a positive person and I am aware its not fair on my husband to be depressed so I try and put on a brave face.( and, like Mary, my lippy although I'm not suggesting you should do this !) . It must be hard to make this effort though if you're on your own.

              Sending hugs,
              Love Debbie x

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                #8
                Hi Beemer, I also am lucky enough to have counselling on line by a psychologist every 6-8 weeks by NHS via the hospice team.I realise if you canโ€™t speak this form of communication would need to change.For me it helps me to talk about feelings that I may not wish to share with my hubby or family and friends.
                Today on radio 2 there was a woman talking about the impact on MND and being carer for now deceased husband.Just lately there seems to be a few times itโ€™s being a paper,radio or TV raising the profile of MND.Of course these programmes set my thoughts going in all directions and the โ€œwhat Ifโ€thoughts flood back.
                Today has been a good day so far though.
                Best wishes
                Mary

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                  #9
                  Really sympathise Matthew x
                  Diagnosed July 2020, ALS bulbar onset.

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