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    coping

    I have been coping really well since my bad time when first diagnosed. but since i heard of doddie passing and my deterioration I've hit rock bottom the last couple of days i have felt like I want it to end. I have 4 kids and two grand kids. my 3 youngsters are all under 12 3boys who just fight all the time it is just not a happy home entirely not there fault at all but it is getting to me. i am feeling so guilty for not doing dad things and for not being in their futures. i don't want sympathy just wanted to let others know if you are feeling low don't suffer in silence x

    #2
    Patw it was a real blow to hear about Doddie. I too felt quite devastated for him and his family but also for me and my husband as my husbands presentation is very similar to Doddie, my husband was diagnosed 8 months later than Doddie!
    Hopefully this may be a temporary feeling for you, I hope it is. I can only imagine what’s it’s like having three sons under 12 years of age.
    That’s what this forum is for and no one should suffer in silence. A problem shared…
    I wish you good thoughts and sending you a huge hug.xx

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      #3
      Hi Pat,

      You are not alone and the sad news about Doddie also hit me pretty badly at the weekend.
      In my case we are both exactly the same age and diagnosed at the same time in 2016……. very similar people although my rugby career was pretty rubbish.

      I personally try to keep my darkest thoughts at bay but occasionally they do surface especially when something comes along that you particularly resonate with.

      Try to remember the things in your life that you can still be positive about and hopefully that will see you through xx





      Foxes Never Quit 💙

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        #4
        Oh Patw. I think Doddie passing upset all of us. His diagnosis and death being very similar to my husband.

        You are right to share. Sometimes it's hard to express what your feeling but it helps to get it off your chest. I guess the kids are picking up on how the situation is and are choosing their way to confront what's happening by bashing each other.

        Don't suppose calming music might help or film night and ice cream.

        Sending love and hugs 😘
        when i can think of something profound i will update this.

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          #5
          Patw I feel very similar. I was doing well until oxygen dipped to stupid levels plus my only good limb going.
          I have no children. It must be so hard not being hands on.
          i hope you find a middle ground re kids and you getting peace time.

          I'm going away Xmas and I just want to be able to do that. After that, I would be glad to go. X
          Diagnosed May 2021 bulbar onset als.

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            #6
            Patw it is so very hard, and the loss of someone like Dodie who gave great positivity, and therefore hope, makes it seem much harder. All I can say, because it was said to me, is try to recalculate your thinking, so dont look at what you can no longer do, or be, but concentrate on what you can do, adapt, and make those things the new you. It is not what you planned or wanted to be, but you are still a force in the lives of your people and they will adapt with you. It has kept me going for 11 years now xx

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              #7
              Thanks everyone i have a cold now I think it all mounted up. i do not want to bother my wife with my emotions she has so much to do with being mom/carer so this site sorry had to hear it instead. you are all amazing and thanks for your lovely words. keep fighting allx.
              shelly21 I feel your pain being bulbar same as you last month I was good walking eating talking just had no arm use today I'm not doing none. enjoy your trip away and keep the chin up we will get through it.

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                #8
                Patw Pat, coping with the ginormous pile of 💩💩 ​ that ALS is, is beyond difficult ​ - we understand 😘 🤗​​
                ​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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                  #9
                  isn't it just . just very emotional time ,I have not cried in over a year but since Saturday everything opens the flood gates. i have started amatrixalean for saliva not sure if that has heightened it. sorry if spelt wrong

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                    #10
                    Ellie forgot to add u

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                      #11
                      Patw Pat, I totally feel what you are describing. It does all seem like too much at times. I’ve been battling a cold (feels like might be needing antibiotics, going on 2 weeks now and no improvements). I think just getting a cold for us can be a kick to the teeth, as we are all ready dealing with so much 💩. Maybe your cold coming on has added to the weight of everything, and once you get over it you might be more ready to grapple it all.
                      Give yourself permission to h
                      feel whatever you feel, no guilt. Is there anyone to take the kids for the day or over night, just to give you and your wife some peace and perspective?

                      Comment


                        #12
                        So sorry to hear of the tough time being had by many. It doesn't help with it being winter so rubbish weather and lots of colds and bugs going round, added to what you're all already dealing with. The forum is definitely a place to share the tough times, many others will have been through or will be going through the same/similar, you're not alone.

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                          #13
                          thanks again I'm on the mend from the cold just waiting for the next bug to be brought home from the kids AngieCanuck I think in the twelve years with my children they have stayed over at somebodys home a few times. we didn't like putting it on anyone but times have changed so I think we should consider it now. x

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