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The best of a bad deal

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    The best of a bad deal

    I know to some it may seem as if I’m playing down what is a bad deal ( MND), but I’m not. I guess we all experience it in different ways, but I choose to appreciate the good around me. I feel as if I should be anxious, depressed, frightened, or all of those things. I don’t feel that way.
    Instead I feel a more intense connection to the things around me. For example, music, nature, animals, the weather, home and garden, my heritage and family. My only fear is pain and discomfort, but I know I will get help with these.
    this new feeling of connection is great. It is making all the simple things in life more meaningful. It’s as if my senses have become more acute which helps to counterbalance the things I’m losing such as speech/ communication, eating and drinking .
    I’m not at all religious, so this is not connected to faith, Does anyone else out there identify with these feelings?

    #2
    Nothing like more awareness of death to appreciate life. Glad you're able to feel connected and appreciative, long may it continue x
    Diagnosed July 2020, ALS bulbar onset.

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      #3
      I felt some recognition when I read your post Lizzie. My Husband was diagnosed with MND 17/7/18 and died 3/7/19. We have lived in this house since dec 1988 and I drive the same way home from work. We live in the shadow of a famous hill. Suddenly I started noticing the hill on my drive home, and the beauty of it, how different it looked in different weathers. I started to appreciate the country side on our doorstep. I can't explain why

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        #4
        Lovely, lovely post Lizzie, thank you.

        I started thinking a lot about wildlife and nature in recent years and was going to post a reply when I read Olivia H talking about her interest in wildlife.

        For me, I don't know if it's a stark response to my own mortality being limited, but I have a new found respect and interest in all things nature-related and also treat myself to an hour of listening to my favourite 80s and 90s music of my teenage/young adult life, blaring through my headphones every day 😛
        ​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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          #5
          Originally posted by Heather R View Post
          Nothing like more awareness of death to appreciate life.
          I couldn't agree more Heather!! xx

          ​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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            #6
            x to all.

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              #7
              Very true. My son in law sadly passed away 6 months after I got my diagnosis, and I had to be the strong one, it made me re-evaluate and mnd just became a part of life, and I stopped really thinking about it. I'd rather not have it, but it's not the be all and end all. Like Ellie says, there are so many other things to think about, and even enjoy. X

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                #8
                Thanks to all for your responses. It’s good to know positivity and appreciation of the simple things continues. Love to all 😘 x

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                  #9
                  To put it simply I believe we choose how we feel. Happy or Sad. I'm living proof. 😀x
                  Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                    #10
                    I agree Matthew, it’s our attitude that influences how we see things.

                    Life is 10 percent what happens to you and 90 per cent how you react to it(Saying byCharles R.Swindon).
                    Wishing you all a good day...Belting rain here but gardens need it.
                    Best wishes
                    Mary

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                      #11
                      I did some courses a few years ago (pre onset) which taught me that we choose how we feel. Since this course, i rarely get angry and i cope with with far more than i did before. I used to say that so and so MADE me angry, but now i know that it is my responsibility to chooose how I react.. My life got better from the time of this course and is certainly helping me now. Whether i will remain so positive as the disease progresses, i cannot say; I choose to be happy, I choose to believe i will live a long life, even with this disease, i choose life.

                      I also know that some people will be unable to find this level of calm, sadly, no one else can find it for you.

                      I was reading yesterday about a sufferer, Rob Burrow. He says, "i've had such a wonderful life, I want to make the most of the time I have left". He now has to use an eye gazer to speak, is in a significantly more restricted state than me, and is only 38 years old. I cannot say that i would feel like this if i had been told i only had 2 more years to live, but i aspire to be like him.
                      Mum died with MND in 1979 – I have a wonky gene, probably inherited from her. Reckon mine started sometime in 2018

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                        #12
                        I didn’t need or take any courses to be who I am, the most patient person who rarely gets angry (although feels hurt by some words). I choose not to react almost always but every now and again it’s good to get your feelings out. I’ve always been a ‘my cup is half full’ kind of person, take each day as it comes and don’t let negative thoughts take any head room. That is mostly natural. I hardly think about it. I appreciate the little things. But it took me quite a long time to not feel trapped by my lack of walking/hillwalking as that was my passion. my daily pleasure and weekend hillwalking etc Lynne
                        Last edited by Lynne K; 8 May 2021, 14:06.
                        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
                          I've had more courses than hot meals, pun intended! Never retained a thing. My learnings come from the University of Life. The fees are horrendous. 😉😀x
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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