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In Denial

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  • Shaun
    replied
    Dear Madge, we are all with you, you are not alone, and soon you will be able to get out on your scooter causing mayhem in your local high street, running over small children and their mother's as they hog the paths on their scooters.
    Best wishes Shaun

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  • Doug Carpenter
    replied
    Oh Madge!

    Firstly: Welcome! And thank you for posting your very understandable worries and anger.

    It may not offer much comfort, but you are not alone. Everyone diagnosed with MND has had similar thoughts at some stage.

    There is no helpful answer, of course, to “Why me?” anymore than there is to that question asked by a cancer or heart attack patient. It’s the fall of the dice life threw for us.

    There is however a lot of good psychological research and practice – not just amongst MND sufferers, but across much wider cohorts of people with seriously life limiting conditions – which shows that accepting one’s situation and moving forward, concentrating on what one can do rather than what one can’t, is hugely beneficial.

    And what may be of no comfort whatsoever is this socially distanced, completely sterile cyberhug, but I’m sending anyway!

    Hugs

    Doug

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  • panniertank
    replied
    Hello Madge. Gosh, nearly everything you wrote applies to me as well. I can't do any of the things I loved doing:- country walking , steam railways and steam museums , real ale pubs, driving. I also loved taking my mum out of her care home for a day out to give her some quality of life. Now I am stuck in my house all day ( even before coronavirus pandemic ) and I find nearly everything difficult to do. It takes me nearly 3 hours to have my breakfast, shower and get dressed. The only things I find conventional are using my iPad and laptop and watching television. At least you have a motorised scooter. I don't have one yet. So, like you , I feel it all so difficult to accept and wish I could be me again, especially as I had to look after myself due to my spinal rheumatic condition. I bet there are lots of people with serious health conditions who feel like we do . But it has helped me a bit reading your thoughts and knowing I am not alone with those type of thoughts. So I hope this helps you a bit as well. And my denial often hopes there will be a cure for MND soon or I will be one of those very rare people who goes into remission. So, take care and happy Easter .

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  • Madge
    started a topic In Denial

    In Denial

    Hi I just feel the need to put pen to paper .... I was diagnosed with MND in 2017 after being tested for about 18 months to find out what was wrong with me, I was having trouble to climb stairs and walking. I find my journey difficult to accept as I have always been fit and healthy.... why me. I can no longer do the things I love .... for example walking, driving, swimming, pilates and gym let alone trying to wash and dress myself. These are things I took for granted and now all I can do is sit and watch tv, I can’t even cook and clean the house anymore. Everything is such hard work and exhausting for me. I had a good job in London but can no longer travel or do my job. I have weakness in my arms, legs and stomach. I know I am not alone in this but I just find it all so difficult to accept when I had a busy life ....., I want to be me again !! The way for me to get out is on a motorised scooter... which isn’t how I planned my next chapter in life. I am 58 and struggle everyday. I have family and friends but to go to restaurants etc is very difficult for me to get out of chairs and using the bathroom. I feel so angry at times and sad.
    Thanks for reading my story 😓 all the very best
    Madge
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