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Struggling mentally after diagnosis

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    Struggling mentally after diagnosis

    Hi everyone I was diagnosed March 10 this year after first started slurring words March 2020
    i have a partner 4 children and a granddaughter
    physically not much has changed since March but mentally I am in pieces got see counsellor tomorrow so maybe he can help !

    im 40 my partner of 21 years is 37 my kids are 23 , 10 , 8 , 3
    I should be loving the time I have left with them but I’m in such a emotional mess I’m just not able too .

    any advice or help from u lovely lot
    i been on anti depressants for five weeks now just not getting easier

    #2
    Ah sorry about your diagnosis and your stress/depression Pat. I certainly hope that your counselling helps. If you still have a voice then start voice banking. There’s been lots of discussions about this on here so please search.

    Have you got all of the services that help (Physiotherapist, Speech Therapist, OT, Dietitian and Wheelchair Services)?

    How’s your home for any future adaptions? That’s a big subject then you might want to come to later when you feel stronger.

    if you haven’t explained to your younger children and grandchild about your MND the MNDA publish smashing short story books for purpose. You could give the Connect line a ring. The team are fab.

    Take care, 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


      #3
      Hi patw

      my husband was diagnosed 2 years ago. It was a terrible shock. There's no simple answer but accepting the diagnosis and making the most of life and taking each day one fay at a time. Wasting the time being miserable will not help you or those close to you. I know it's a dreadful shock but your family needs you.

      there's lovely people on here who are on the same journey and I know they will welcome you and help in anyway they can.

      love and hugs to you and your family
      Denise xxx

      Comment


        #4
        Hello Pat. I too am very sorry about your issues. I think you have taken an important step by agreeing to see a councillor tomorrow. Please be open and honest with him.

        If the antidepressants are not helping speak to your GP about different strengths.

        Lynne makes a really good point about talking with the connect team. They will be able to point you in the right directions.

        Hope you get some comfort over the coming weeks.

        Comment


          #5
          Hello Patw. When I was diagnosed last May I was devastated until I realised two things: Being here you are never alone and the only way to cope with the future is by taking it one day at a time. Sounds too simple? Well it actually is. Stay Strong 👍x
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

          Comment


            #6
            Originally posted by Lynne K View Post
            Ah sorry about your diagnosis and your stress/depression Pat. I certainly hope that your counselling helps. If you still have a voice then start voice banking. There’s been lots of discussions about this on here so please search.

            Have you got all of the services that help (Physiotherapist, Speech Therapist, OT, Dietitian and Wheelchair Services)?

            How’s your home for any future adaptions? That’s a big subject then you might want to come to later when you feel stronger.

            if you haven’t explained to your younger children and grandchild about your MND the MNDA publish smashing short story books for purpose. You could give the Connect line a ring. The team are fab.

            Take care, Lynne x
            Hi lynne yes I got the full team looking after me , we have talked about adaptions and everything else , the kids know what they need too at this stage !! Thanks for everything,, I have told everyone of my diagnosis after two weeks but as soon as I did I just got so down and can’t get back up

            Comment


              #7
              Originally posted by matthew55 View Post
              Hello Patw. When I was diagnosed last May I was devastated until I realised two things: Being here you are never alone and the only way to cope with the future is by taking it one day at a time. Sounds too simple? Well it actually is. Stay Strong 👍x
              Thanks Matthew,, hopefully I will get there 👍👍 I need to stop being hard on myself as it’s only been 7 weeks

              Comment


                #8
                Originally posted by Bowler View Post
                Hello Pat. I too am very sorry about your issues. I think you have taken an important step by agreeing to see a councillor tomorrow. Please be open and honest with him.

                If the antidepressants are not helping speak to your GP about different strengths.

                Lynne makes a really good point about talking with the connect team. They will be able to point you in the right directions.

                Hope you get some comfort over the coming weeks.
                Thanks bowler means a lot

                Comment


                  #9
                  Originally posted by denise View Post
                  Hi patw

                  my husband was diagnosed 2 years ago. It was a terrible shock. There's no simple answer but accepting the diagnosis and making the most of life and taking each day one fay at a time. Wasting the time being miserable will not help you or those close to you. I know it's a dreadful shock but your family needs you.

                  there's lovely people on here who are on the same journey and I know they will welcome you and help in anyway they can.

                  love and hugs to you and your family
                  Denise xxx
                  Hi thanks Denise ,, I know I shouldn’t waste the time I got but as u will all know how hard it is , one day at a time is my new saying then x
                  its just the shock and then dealing with these changes that’s going on with the body ... never mind I got to come to terms and live with this rather than it get me x

                  Comment


                    #10
                    Exactly don't let it get you. Fight back. You can do this.
                    😘

                    Comment


                      #11
                      Originally posted by denise View Post
                      Exactly don't let it get you. Fight back. You can do this.
                      😘
                      Thank you Denise , and I’m sorry u are here aswell xx
                      1 more thing I’m still able to swallow but have no appetite with all that’s happening
                      im having to take complan drinks all day could this because of the anti depressants or riuzole ?

                      Comment


                        #12
                        Patw Sorry you've had to find us and join us, but glad that you did because we know exactly what you're going through.

                        Counselling is your key and hopefully you will get a lot more than tomorrow's session - one is simply not enough. I had a few months of counselling and it helped me so much, not only to come to terms with what the diagnosis meant for me personally, but for my family too. (My youngest was also 3yo)

                        If he is a Clinical Psychologist, he can look at your meds too. If you're not able to access more and/or regular counselling, get referred to your local hospice who should offer counselling, and more. And no, hospices aren't just places to go to if you're dying - my hospice has been a lifesaver for me...

                        How are you physically?

                        Sending you a big hug, Pat.

                        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


                          #13
                          Originally posted by Patw View Post
                          .... but have no appetite with all that’s happening
                          im having to take complan drinks all day could this because of the anti depressants or riuzole ?
                          Depression itself dampens the appetite Pat, which isn't great and can become a vicious cycle. It's good that you're taking Complan at least, obvs it'd be great if your appetite was healthy, but one step at a time. Try not to lose weight though. xx

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

                          Comment


                            #14
                            Originally posted by Ellie View Post
                            Patw Sorry you've had to find us and join us, but glad that you did because we know exactly what you're going through.

                            Counselling is your key and hopefully you will get a lot more than tomorrow's session - one is simply not enough. I had a few months of counselling and it helped me so much, not only to come to terms with what the diagnosis meant for me personally, but for my family too. (My youngest was also 3yo)

                            If he is a Clinical Psychologist, he can look at your meds too. If you're not able to access more and/or regular counselling, get referred to your local hospice who should offer counselling, and more. And no, hospices aren't just places to go to if you're dying - my hospice has been a lifesaver for me...

                            How are you physically?

                            Sending you a big hug, Pat.

                            Love Ellie.
                            Hi Ellie and I’m sorry that your here too but every cloud cxx
                            On my diagnosis date they said about the psychologist but being a male I said I don’t need that I’m strong , what a fool I was but will be seeing him tomorrow with my tail between my legs xx

                            physically I’m still able to do everything arms getting weaker but can still do everything my speech is affected but I have good days where it seems normal, my legs feel weak but is that because I’m not getting enough food ,,, so as I say I shouldn’t be wasting my time feeling sorry for myself as I can still do stuff with my family but I just can’t stop crying

                            Comment


                              #15
                              Originally posted by Ellie View Post
                              Depression itself dampens the appetite Pat, which isn't great and can become a vicious cycle. It's good that you're taking Complan at least, obvs it'd be great if your appetite was healthy, but one step at a time. Try not to lose weight though. xx
                              Thanks Denise I’ve lost a couple of pounds since diagnosis so not that bad ,, but since not working and from first symptoms over a year n bit a go I reckon a stone has been lost x

                              Comment

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