Announcement

Collapse
No announcement yet.

Tired of coping

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

    Tired of coping

    Warning. I’m throwing a pity party, but I am looking for honest input, not just commiseration.

    How do you get through the days when everything seems so bleak?

    I see my daughter and one grandchild weekly, but I can’t actively play with her because of mobility. I want to sit on the floor with her and build with blocks. I want to go out to the playground and push her on a swing. I can’t.

    I used to knit and crochet, but my hands are weakening so I can’t. I see beautiful patterns that I want to make, but my hands won’t cooperate. I’ve givn up my online crafting groups because it hurts to see all the lovely things I can no longer do.

    A simple meal takes half a day to prepare, and still requires my husband to fetch and carry. I burn my hand regularly because I’m sitting on my rollator and forget that I need to hold my hand higher while stirring the pot. I used to have guests for dinner regularly. I don’t have the stamina nor mobility to do that now. One more thing I’ve had to give up.

    I’m tired of people offering suggestions on how to work around these things. Read to your grandchild. She’s three and doesn’t want that. She wants someone to play with her. Why don’t you knit dishcloths? Because I want to knit beautiful lace, not ugly rags.

    What’s left?
    Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

    #2
    Hi Maria C .. I know its no help but I totally get where you're coming from.

    Sometimes I am fed up of saying I'm fine to friends because I know it's what they want to hear. There's nothing they can say if I'm not ! I get fed up trying to be upbeat and positive. I wake up in the morning and think ive got a mountain to climb just to get showered, toileted and looking vaguely presentable in my powerchair.

    I know I'm fortunate to have lived long enough after diagnosis to meet my grandson but i long to play with him. They put him on my knee in my wheelchair but of course he quickly wants to wriggle down. I suspect if I let him drive it he'd be more interested 🤣 When I'm with him everyone is taking photos and I'm grateful but it makes me emotional.

    I do try to focus on what I can do rather than what I've lost and I know I'm so lucky to have a loving family. We're only human and MND is devastating.

    Love and hugs to you ,
    Debbie x😘🤗

    Comment


      #3
      Warning: this might be too honest! I hope my bluntness isn't too much for you Maria - I have the luxury of having survived the pity party.

      Originally posted by Maria C View Post
      How do you get through the days when everything seems so bleak?
      That's when you find out what you're really made of...

      You listed the things you can no longer do, now you need to focus on what you can do - to adapt is to survive.

      My daughter was 3 when I was diagnosed. She learned to adapt to our new 'games', as I learned to manage my expectations - it's a sink or swim stage of MND. It is unbelievably difficult, cruel, unfair etc. etc. and it can be very beneficial to get counselling to help you get your head around your grief, anger and sadness. (Hospice usually offer counselling)

      Your life has changed beyond recognition and will likely change yet more. With support, love and understanding, you can lead a fulfilling life. 🤗🤗😘😘

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

      Comment


        #4
        We have a grandson who is 4 in a couple of weeks, it is so upsetting as he asks Grandad to play with him and he can't play how he used to. But what they do to have fun is Grandad plays tunes on You Tube on his computer and me and our Grandson dance, so he's involved by picking the tunes.

        Our Grandson asks some upsetting questions like why is Grandads voice broke, can I fix it with my hammer? In his little world everything is fixable. He still gives Grandad a cuddle and doesn't seem bothered that he can't cuddle him back.

        He does drawing and shows it to him, and he know gets that Grandad speaks with a computer. Its tough, but it would be worse if he stopped coming. The books for children from MNDA help to explain in age appropriate format.

        It still feels like something else has been taken away though.
        Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicates with eye gaze.

        Respiratory and blood gases still within normal range.

        No speech but sense of humour still fully intact.

        Comment


          #5
          Deb Thank you. It’s nice to hear from someone who gets it.

          I really am trying to focus on what I still have, but the losses keep adding up. This was just one of those days where I can’t quite see the bright side of anything. Hopefully tomorrow will be better.
          Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

          Comment


            #6
            Hi Maria,
            If anyone deserves a pity party it’s the members of the MND club! I think you are allowed to feel whatever you’re feeling! No one can fault you for grieving what you lost…
            I had a big cry the other day when I realized that my driving days have ended (can’t seem to hold my arms up on the wheel and struggling to get my hands to grip the wheel). I felt my independence slipping through my fingers.
            The weather was grey today for you and I, here in Ontario, so that certainly doesn’t help. But Spring is around the corner (I spied a Robin in my backyard today 🌸).
            sending hugs 🤗

            Comment


              #7
              Ellie no, you’re not being too blunt. I did ask.

              I already know what I’m made of. I am practical, and pragmatic, and I am strong. What I also am is very, very tired.

              My child is an adult with children of her own. I don’t have the same sense of obligation to survive for her that a person with small children would feel. I don’t live in an area with great resources. Hospice? Ha! At least not until I’m at death’s door. I have been stuck in the house for months now because I can not reliably transfer from my wheelchair to the car. There is nowhere I can go without a car. I exist between my bed and my powerlift recliner.

              The frustrating thing is that all the things I can still do are lined up to be upcoming losses. I can still feed myself, as long as someone puts the meal in front of me. But my hand is weakening. I can still speak, but I am noticing changes in my voice.

              Here’s hoping I can get a good night’s sleep and be more rational in the morning.
              Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

              Comment


                #8
                AngieCanuck I suspect that poor robin is huddled in some hedge, muttering about why he got here so early.

                I gave up driving last May. That loss of independence is incredibly hard to process.

                When is your zoom meeting with the ALS rep? I hope it’s productive for you. (Hugs)
                Diagnosed December 2020 with lower limb onset ALS, now involving hands and arms.

                Comment


                  #9
                  Hey Maria 💕,
                  Yep, the robin is shivering tonight! I threw some blueberries in the backyard for it, and he eagerly ate all of them.
                  My zoom meeting is on Thursday. I’m not sure what to expect, but I definitely have some questions for them.
                  I’ve got a hair appointment on Friday at a fancy salon and haven’t had a hair cut since July so I’m really looking forward to that ☺️. I’m going to get my hair highlighted rose gold (pink 🌸). I always wanted to do that, so ai figured I would cross that off my bucket list 😜
                  Thinking of you,
                  Angie

                  Comment


                    #10
                    I can only send my love and wish I could do something to help.

                    😘
                    when i can think of something profound i will update this.

                    Comment


                      #11
                      Maria C we all have days when it's all just too much...I feel it's just like the grief process and we'll be hit by various stages that will come and go.

                      Denial.. Anger...disbelief....acceptance (I know there are 7 stages but you get my drift) this cycle continues with every loss. That's what we are all managing....loss.

                      It's really hard to accept & of course some of us cannot and choose a swifter 'end'.


                      ​​ It's hard to find the positives on dark days...really hard. It's the small things for me...this morning I've made myself a cup of tea...and cereal...walked in my wobbly way...sitting on my comfy sofa...I'm warm...and not in pain...there may be days when none of this is possible however in the here and now I'm ok...many many of my MND family are not.

                      Hope today is a better day for you....💙😘🤗

                      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.​​​​​​

                      Comment


                        #12
                        Originally posted by Maria C View Post
                        Hospice? Ha! At least not until I’m at death’s door.
                        Forgot you're in Canada. Hospices over here help people living with life-limiting conditions to live with the best possible quality of life and are a terrific source of support.
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #13
                          Must be the same here as is Canada. 🙁
                          when i can think of something profound i will update this.

                          Comment


                            #14
                            @Maria C
                            I could join you in your pity party. I look at this forum most days and there are people struggling with terrible adversity with lack of funding and support and yet are surviving with good grace. There are dynamic people embracing complex assistive technology. I just don’t have the energy. I put down to my age (70) and loss of ambition. I feel for you xx
                            Diagnosed 18th May 2021 with sporadic ALS. Limb onset. Terrified of not being able to breathe easily.

                            Comment


                              #15
                              I think we all have a good days and bad days and on top of this I personally seem to have found myself focusing on ‘milestones’ such as the last time I gave somebody a hug, walked through the fields where I live, drove my car, fed myself, etc, etc.

                              However I do try to stick to the positives wherever possible, I know it’s hard but I try to do it for myself and for the people around me. After all I’m still alive, have people that love and care for me, watch the football and can have an occasional beer 🍻
                              Foxes Never Quit 💙

                              Comment

                              Working...
                              X