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    #16
    Just to make you smile my husband Steve makes me laugh and always has .So he put a cushion on my shower chair as my bottom is a little sore.After transferring me on to the loo and back to shower chair he asked if I wanted a bottom wash before he applied cream.( My dominant hand has a Will of its own).
    Before I realised what was happening he was sponging the cushion!,😂😂Thank God he didn’t cream the cushion as well.

    Goodnight all.
    Mary x


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      #17
      xx
      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.

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        #18
        Lynne, you are doing amazingly, like all of us here. There are days I find im feeling quite upbeat and positive, but other days taking stock and thinking yes, 6 months ago I could do this or that, now it's much more of an effort. They say today is always your best day with mnd, physically perhaps that is true, but mentally days can be good and not so good randomly.
        My hubby certainly earned the 'in sickness and in health' badge🙂 having had me with this for 10 years, plus my cancer earlier this year! He just says that I'm still the girl he's always loved. I feel he might want to ask for his money back lol.
        But we should never apologise or feel we have to make up for not being 'healthy'. It's the lotto of life, but just keep trying to get something good out of each day, even a good old complain can improve things😀 xx

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          #19
          Hi Lynne, so sorry it's become such a struggle for you. I have felt for you when you have reported how exhausting daily living has become, and I really identify with how hard it is not to independent. I think you have also said you get pain as well, which must be undermining. So I have often admired your positivity despite this, and not surprising this is hard to maintain at times. Sending love and hugs xx
          Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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            #20
            Thank you both Olivia and Heather.

            I do have pain but got painkillers that work for most of it and through the night.

            I managed to shower and dry myself then do my usual, just help with bras and did most of the rest of dressing. But I called Steve to come untangle my jumper which was rolled up by my shoulders at the back.

            As I said in my first post about this subject I’m usually always upbeat no matter what. I normally don’t allow myself negative thoughts as I believe the can be self defeating. But hey, I’m human aren’t I.

            I hope that you both have a good day xx

            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.

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              #21
              Ellie that's hilarious about the sling - I get my training on Friday!! - Albert's accepted it now that it has to be but I know he's been putting it off, yet another new normal for us,

              I get everything said here about independence, its just knowing when to say "Cant do that anymore" and knowing its more strain/pressure on the carer, being analytical minded I would say I do 95% for Albert, he cant even get his face mask on or comb his hair but I steel myself for the next phases - to which I think feeding will be the next, he will absolutely hate that,

              With the slower progression I think you just move with it all, all the different "New Normals" throughout this past 3 years or so I have just continually tweaked and adjusted, because of that I think I have been living in somewhat of a parallel life and lately I have had to have a word with myself and take a step back and probably only now am I beginning to realise that this thing is really happening,

              Of course its happening, my bungalow looks like a care home, but somehow my head hasn't actually processed the reality of it.............not sure if you know what I mean here?

              Husband Albert diagnosed PMA Feb 21

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                #22
                Hi Lynne,
                like you and many others we have to make constant adjustments to our lives. The toilet has been the worst of it for me - I can’t use my legs and now have a ceiling hoist and closomat so i am still independent. However, as you mention getting dressed etc, i finally gave up wearing knickers and lately a bra. How freeing! Speeds up the whole business. Took a while to get used to it (i sit on a flannel for hygienes sake which can be easily changed - maybe too much info?!) but it really does make life simpler. If i moan about something, my 24 yr old daughter tells me o think of a solution and get on with it! Such sympathy!! BUT - she does have a point and 1 year on from being knickerless I can’t thank her enough for her no nonsense comments. Good luck and remember - its good to moan!
                Xxx

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                  #23
                  Originally posted by Suefromwakey View Post
                  ... somehow my head hasn't actually processed the reality of it.............not sure if you know what I mean here?
                  Sue, I think that's quite normal when you're immersed in the thick of it every day.

                  I recently caught sight of myself in a large full-length mirror in the Physiotherapist's gym and even I had to take a second look at myself - I'm well aware of my twisted feet, drooping neck, slouched body and Buddha belly, but seeing it all together, in glorious technicolour still managed to startle me 😲😏 😘😘
                  ​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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                    #24
                    Hi Sarah and thank for posting on my thread. I couldn’t go without bras like you as so uncomfortable. It’d make my muscle that take the weight of my boobs hurt.

                    Your idea of sitting on a flannel sounds fine to me. Do you always wear a dress? If so don’t you get cold legs? I just recently changed from wearing dresses to jogging pants as easier to put on and warmer for my legs. I couldn’t get tights on when wearing dresses. Jogging pants are scruffy to me as never wanted to wear any before, but I accepted a compromise, xx
                    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.

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                      #25
                      I am so glad that I was born as a boy. 😂😁😉🧒xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                        #26
                        To keep a bit of independence (by using my walker to transfer from my RR chair to my powered wheelchair) I used my floor peddling machine for an hour, half forwards and half backwards. My aim is to maintain some leg muscles. Then I managed to move it, not far, to where it stays. A good day I guess xx
                        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.

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                          #27
                          Great stuff Lynne 👍👍
                          ​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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                            #28
                            Thanks Ellie. I got an appointment with Orthotics at Fairfield where I’m going to ask for shoes to be made. She offered last time that I was there but I declined. My two or three curly toes on right foot and two broken toes and big toe that bends double with the broken toes when I try to get my foot into shoes. I stood on the two toes on my left foot when they were bent under. I was coming out of our wet-room in the middle of the night so tired. It hurt excruciatingly. The toes on my left foot were first to curl xx
                            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


                              #29
                              Originally posted by Lynne K View Post
                              I got an appointment with Orthotics at Fairfield where I’m going to ask for shoes to be made.
                              That's great Lynne, proper fitting shoes should make a big difference to you.

                              I guess neither of us would make it as foot models now 🤭😍😘
                              ​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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                                #30
                                Thanks Ellie xx
                                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.

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