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    Better

    So at last i feel relaxed, settled and I feel great. We often only say the bad stuff so I wanted to share a good time. Excuse my grammar as English didn't find me at school.

    I just wanted to say to all the fresh diagnosed amongst us that things do slow down. The endless appointments do lessen. Me & my partner have worked tirelessly in our home re adaptions & I can now safely use my new bathroom & bedroom.

    I've purchased second hand items re saving the pennies. Not into bucket lists as I just want the simple things. Spending time with my husband is a must.
    in the dark days i felt the stress so heavy on me. Here are just a few things i did/do to lift me:

    have a bunch of fresh flowers in sight.
    Buy that posh hand cream.
    Mix your own essential oils & put it in a foot spa. The smell is devine & I so miss my bath ritual.
    I now have a massage every week. There are mobile therapists but check with your local hospice as they now do all my massages.
    Youtube have some great excercises or range of movement excercises. There is a fab couple that the lady shows you whats called assisted physio basically someone moving your limbs etc.
    i go the park & have a coffee & just watching dogs & kids playing makes me smile.
    Don't look back and compare yourself with what was. Its downright destructive.
    ive raised a bit of money for my hospice by selling old clothes etc. Give back if you can.
    spoil yourself every week. Whatever it is just put yourself first.

    I have been in the pits of this awful disease but I have always got up every morning and faced the new day head on. Thank you for all your hints & tips because without them I wouldn't have a clue.

    Just keep hanging on in there x
    Diagnosed May 2021 bulbar onset als.

    #2
    Thank you so much for your lovely post shelly21 πŸ‘πŸ‘

    Good for you to have found a wonderful 'new way' of living 😘
    ​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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      #3
      Thats a great post shelly21 . Thank you for sharing your tips for an uplifting day.

      I too love beautifully scented candles and hand creams but the best tip is to focus on what you can enjoy and not what you've lost .Sometimes this is easier said than done but you're right in that it leads to feeling settled.

      l enjoy having fresh flowers in the house too and I make sure hubby knows this 🌼 🌻🌹! πŸ˜˜πŸ€—xx

      Comment


        #4
        shelly21
        Good for you that you have reached a stage on your journey to look at the things that matter to you and your husband and bring peace and happiness.

        Hope you have another good day tomorrow too.

        Best wishes
        Mary

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          #5
          I often come onto the forum to read the comments and I have got many answers to questions that I have had over the past few months. But I just want to say thank you shelly21 for your post today. It was good to read and much needed today. I am finding it hard to pull myself out of the black hole at the moment but that has helped. It’s just so hard getting to that β€˜positive’ mind set again. We had a stair lift fitted today which I know will help me but again it’s just a constant reminder. Also thanks to all the β€˜regulars’ on here - I do enjoy reading all your comments. 😊

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            #6
            shelly21 Very uplifting, and I agree that all the madness of the first 3-6 months (hospitals and health professionals, sorting out finances, telling people...) is exhausting. The way to master this is take control of what you can and what matters to you. All the very best to you πŸ™‚x

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              #7
              Shelly and the above replies are such lovely posts. Really very touching to read and so emotional. Thank you all xx

              Comment


                #8
                shelly21 great post and thanks for sharing your thoughts. The initial days post diagnosis are indeed very dark and overwhelming. Getting to a place of calm is achievable and you've shown that...great tips for self care πŸ€—πŸ˜˜
                Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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                  #9
                  Originally posted by shelly21 View Post
                  I just wanted to say to all the fresh diagnosed amongst us that things do slow down. The endless appointments do lessen.

                  Just keep hanging on in there x
                  Just wanted to say thanks for the above advice.
                  As a "Freshly Diagnosed" myself I am in that first crazy couple of months filling in lots of forms and watching a medical team assemble around my case (Physio is visiting this afternoon!).
                  I fell I am quite literally having to arrange the rest of my life in one go.
                  Longing for this to all level out so I can get on with "living with it" in a positive way.
                  Hi, I'm Eddie.
                  Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
                  Still walking and talking, and wondering what the future will bring.

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                    #10
                    Don't worry it soon calms down and visits happen monthly. Hospital only if something untoward occurs. πŸ˜‰πŸ˜πŸ˜œπŸ˜‹xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

                    Comment


                      #11

                      For newbies, in particular: If anyone does not want a healthcare professional to visit so often or on a particular day, you are not beholden to anyone, at any time - although it sometimes doesn't feel like it, ultimately we're in control (it's not the 1950s 😏) 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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