• Janey Henderson posted an update 1 year, 3 months ago

    Charlene, your posts are so positive. I’m afraid I have to own up to jot getting out of bed for over a weak. I’m overwhelmed & exhausted. I just want this over & done with. Janey

    • @polly – thank you for your kind words, but know that I am thinking of you! Sorry to hear things are such a struggle for you as of late. Do you feel your disease is progressing? Is there anything we can do to help (I know loaded question, but wish I could do something for you). Please know Im thinking of you.
      Char.

      • Thank you. I think I’m struggling as it’s all so new to me. I’m very low & finding it hard to motivate myself. I’ve been trying to do something each day. I’m going to downsize so I’m working on my bedroom & sorting things for charity. My mum is a great help.

        • Hi @polly – so nice to hear from you, though so sorry to hear you’re struggling. This disease is so tough, not only for the physical issues it causes but the mental anguish too. I’m glad your Mom is a great help to you, and hope you’re finding ways to keep your mind busy. Something that really helped me was learning a new hobby that I could do while resting — knitting, card-making etc. Would this be of interest to you, Janey? I also spend lots of time on Zoom with friends and family. Downsizing and donating some things for charity is a good way to know you’re helping someone too! Hang in there and know you aren’t alone. Feel free to write us anytime! Charlene.

          • I typed a reply to you but was unable to post due to inappropriate word! Have no idea what that could have been?

            • Hi @polly, so sorry to hear that — sometimes I swear this forum has a mind of it’s own! We have implemented “safe guards” to avoid spam and sometimes it picks up on what-is-assumed to be inappropriate words, when they actually aren’t. I know that can be super frustrating, sorry to hear that happened! You can direct message me if you want (or email: [email protected]) if that would help? Char.

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