Announcement

Collapse
No announcement yet.

1440 minutes available today

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    1440 minutes available today

    Hi All, I guess we all have to decide how we use today and try and set our mind set.We all have hopes and fears and some days don’t go well.Today I intend to enjoy my blessings( despite another hospital appointment)For me there seems little point ruining today by being worried about tomorrow.Of course the thoughts come but I refuse to let them overwhelm me.On a bad day I have a pity party for one and shed a few tears.
    So here goes, prayers said,considered the blessings of having family, friends and health professionals all trying to help me on this MND journey.I am aware not everyone has as much support so not trying to be insensitive.

    A brand new day awaits me..Off to get showered and dressed ,put lippy on and enjoy how today unfolds.Of course I can do without aches and pains but lucky enough today to be seeing a friend and our daughter.Of course having company is a pleasant distraction from myself.
    Hope my mood lasts😂
    Wishing you all the best day you can manage .
    Mary

    #2
    Mary C Have a great day Mary. Always good to grab them when they are there. Why oh why are British bank holidays always wet? And whilst I’m at it Why is abbreviation such a long word?

    Richard
    Richard

    Comment


      #3
      Thank you Mary C

      That's lovely. I need this today. And here's a little paragraph I came across which I hope cheers everyone:

      The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths.

      These people have an appreciation, sensitivity and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen. (Attributed to Elizabeth Kubler-Ross)

      So, hello to you beautiful people!
      Carer for Dad - MND (ALS) 22/4/21 and Mum Alzheimers 26/5/21.

      Girding my loins and grinding my battle axe for them both... https://forum.mndassociation.org/cor...ilies/wink.png

      Comment


        #4
        Mary, love this honest appraisal of your approach.

        We used to say “let’s make today the best we can”.

        Comment


          #5
          Hi positive vibes,
          I like that quote from Elizabeth Kubler -Ross.I think we have to try to get on with our journey and reach out when we have uncertain times.I try and read a variety of books but do enjoy reading how others cope in the face of adversity.
          Well I am all washed and scrubbed ready for a friend coming for coffee( I know we aren’t supposed to have people in our homes ) but I chose to see family and close friends who are trying to be careful.I figured that with a life limiting diagnosis I had to decide whether to withdraw from social contact or to see them but use the precautions .I have to say these visits bring me great pleasure.Hospital later to talk about having a PEG .
          Have a good day..as best as you can.
          Best wishes Mary

          Comment


            #6
            I used to welcome each morning with thanks that I was fully fit and able. Now it's just with a sense of disappointment that I have awoken. 🤔
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

            Comment


              #7
              Enjoy your day Mary.

              Many of us have lost control of various aspects of our lives, so it's important to control that which we can and make it count.

              Hope your appointment went/goes well.

              Love Ellie.
              ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

              Comment


                #8
                Thanks for your positive post Mary. I was surprised by the time it took you to shower and dress (looking at your related posts). It takes me an hour and a half, mostly independent but a little bit of help Friday Steve to fasten hooks and eyes.

                Good luck with your hospital appointment, Lynne x
                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.

                Comment


                  #9
                  Hi Lynne, I don’t hang about in the shower ..each morning we have our routine and it’s in and out.I can still stand up so manage with hubby helping me.I can still dress but can’t do socks and shoes and hooks and eyes.
                  When I was working I was in and out the shower in 10 minutes unless washing hair day.I am lucky as have relatives that come and blow dry my hair(well I must keep my appearance up whilst I can) Heaven help me when I need Steve my husband to put my make up on..I might look like a clown.
                  He tried blow drying my hair but tangled the brush up in hair and thought he might have to cut it out😂
                  Thank goodness we both have retained a sense of humour so far !
                  Best wishes
                  Mary

                  Comment


                    #10
                    Thank you for the positive posts Mary and the quotes positive vibes,

                    We try and make the most of everyday like you. Sometimes we succeed... it helps when the sun is shining and we see family. I also find the occasional duvet day reading and listening to music helps me recharge. I used to think this was giving in but now I enjoy these days.

                    As for hair blowing and make up.. well I've tried to show my hubby how to do it 🤣 When I win the lottery I'm going to pay for us all to have personal stylists every day. 👱‍♀️💄💅

                    Hope your hospital appointment goes well,
                    Love Debbie x

                    Comment


                      #11
                      https://www.youtube.com/watch?v=RQH1i_zZ-_M
                      Copyright Graham

                      Comment


                        #12
                        So true

                        Comment


                          #13
                          Loads of love xxxxxx
                          Copyright Graham

                          Comment


                            #14
                            Life is indeed a song lyric. 😁x
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

                            Comment


                              #15
                              Originally posted by Graham View Post
                              Loads of love xxxxxx
                              Love Talk Talk and this track Graham so thanks for the memory. I thank my then teenage daughter for introducing me to the band during the 80’s. The closing lyrics sum us up perfectly.
                              Baby, life's what you make it
                              Celebrate it
                              Anticipate it
                              Yesterday's faded
                              Nothing can change it
                              Life's what you make it
                              I’m going to do this even if it kills me!

                              Comment

                              Working...
                              X