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Tired of coping

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    Originally posted by Rosemary6NT View Post
    @Maria C
    I could join you in your pity party. I look at this forum most days and there are people struggling with terrible adversity with lack of funding and support and yet are surviving with good grace. There are dynamic people embracing complex assistive technology. I just don’t have the energy. I put down to my age (70) and loss of ambition. I feel for you xx
    Edit: I will add that my breathing is very shallow now and that frightens me a lot. I can’t get past that mentally.
    Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.


      Maria C I think it is normal and understandable to have days where the weight of loss of capability weighs heavily.

      I am fortunate that I don't get many. I am good at finding positives - I can't work, so I have free time.

      I can't cook - so someone else decides what is for dinner.

      I struggle with most of my hobbies - so I do them more slowly, get help, do something different, find new ones.

      My voice is not good and I cannot sing anymore... so I make annoying noises or find gadgets that do 🤣.

      My neices came and wanted to play (age 2 and 5). I couldn't get on the floor, but we incorporated my powerchair into the magical unicorn world... which also included a short ride on my lap.

      I can still do so much loving, listening, laughing and feeling. On the bad days I remember this and wait for a good day. Because for me they always come. I hope they come back for you too xx
      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!