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    #1

    Not a good day

    Not had a good day today. Been in tears and tantrumming most of the day. Sheer exhaustion and frustration. Then fell over backwards and can't even get myself up. Luckily my daughter heard and came to help me and no damage done.

    Asked my sister for help. Never asked her for help before... but she is busy and might try to pop over in next couple of weeks... her husband is stressed at work... I just wish I hadn't asked. I'm so overwhelmed and exhausted today.

    Got stairlift fitting, council surveyor, video call to finally meet MND nurse, District nurse to bandage my toes and a physiotherapy appointment all tomorrow.

    Wednesday I have initial dietician appointment, social services coming to help me write job adverts for personal assistants and then counselling

    Thursday (if I survive till then) I am voice banking.

    Plus a massive list of things to do.... I just want time to enjoy myself and live a little...

    Sorry, having a rubbish day with pain too... probably not helping either πŸ˜•
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.
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    • 2 likes
    #2
    So sorry you're having such a rubbish day TinyLady . A fall really shakes us up physically and effects our confidence. It's horrid when you can't get up so its not surprising you feel tearful and emotional.

    You have such alot going on so it must be overwhelming. Hopefully the support you're getting this week will be consistent and helpful so you can live a little.

    Big hugs πŸ˜˜πŸ€—xx
    • 3 likes

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      #3
      Thank you Deb - I don't want to live in the hospice, but I don't seem to cope well at home. I was already tired and overwhelmed when I fell...
      Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

      Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

      Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

      Comment

        #4
        Sorry to here all that TL. A fall does knock your confidence a lot. You seem to have a lot of stressful things going on at the same time and I hope it gets better for you soon. You seem like a positive person and will pull through. Not easy with this horrible illness. Tiredness ales me much more unstable and at risk of falling too.
        • 2 likes

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          #5
          As falls go it was quite a good one. I landed as controlled as possible in an open space... nearly had my head in the cat litter tray though....

          I'm trying to do too much... run a home, be a mum to two teenagers, adjust to a late diagnosis and manage adaptations etc. It's no wonder I am struggling... but knowing it's understandable doesn't actually solve it.

          All tomorrows appointments are important and urgent... I'm going to try to manage my pain better so maybe I'm less tired
          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

          Comment

            #6
            TinyLady Yes, it's heaps easier in the hospice - you don't need to worry about anything; you've help 24/7; your needs are well catered for; not to mention it's peaceful and restful - that's why I go on my holidays to the hospice πŸ‘πŸ‘

            Pain is very debilitating - it saps every last bit of energy and good mood you have...

            Hope tomorrow goes well and you get results. πŸ€—πŸ€—πŸ˜˜
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
            ​
            • 3 likes

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              #7
              TinyLady Sending you one big long gentle hug.

              Richard
              Richard
              • 3 likes

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                #8
                TinyLady hope all the suports kick in properly, then you can concentrate on keeping well and doing the things you like to do. Sorting all these things out is a huge task, many people are able to do them gradually, not all at once. You have been thrown in the deep end... you are a strong lady xx
                • 2 likes

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                  #9
                  TinyLady Sending positive energy to help you get through today. Fingers crossed that everything goes smoothly.
                  Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
                  • 1 like

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                    #10
                    TinyLady sorry you've had such a tough time. Hopefully things come together today...pace yourself and rest when you can 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. NIV overnight. Generally weak. Mostly terrified.​​​​​​
                    • 1 like

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                      #11
                      We all have bad days, we are still human are we not? β€οΈπŸ™„πŸ˜πŸ€—xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx
                      • 2 likes

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                        #12
                        TinyLady It's so hard to balance getting what you need quickly, but not having all your days jam packed with appointments, I feel your pain.

                        All these are all important steps towards getting the support you need to reach your goal of feeling less tired and able to enjoy life, hang on in there.

                        I'm glad to see you are getting support with appointing a PA that is an overwhelming task on its own. Also good that you will be finally meeting the MND nurse.
                        Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.
                        • 1 like

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                          #13
                          TinyLady does sound exhausting and frustrating day, take care of yourself, all the best with the tasks, sending love x
                          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
                          • 1 like

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                            #14
                            TinyLady How did today go? Can you mange a quiet evening so you’re rested for tomorrow’s circus?
                            Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.
                            • 2 likes

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                              #15
                              Thanks for the support. More screaming tantrums today, don't know whats up with me... but stairlift in - although feet dangle as feared.

                              MND nurse and colleagues seemed nice. Talked through PEG procedure and recommended some food supplements. I said no PEG yet as too overwhelmed.

                              District nurse not coming again as they have no idea what is wrong with my toes.

                              Hubby thrashed a few bits out with council and OT and insisted they come Thursday to answer my questions.

                              Then an incredibly painful massage from my physio who was a little shocked at my decline since he last saw me 5 weeks ago.

                              Now full of pancakes and resting before another full on day. Supposed to be doing job adverts... far too tired 😫
                              Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                              Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                              Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                              Comment

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