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Thread: Finding comfort

  1. #11
    Forum Member
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    Feb 2019
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    Hi everyone! I was diagnosed just 2 weeks ago. I have had symptoms for over a year. My husband and son have been a wonderful support. Still trying to get my head around it all! It is odd but I feel worse now that I know I have mnd. I am a very anxious person as well. My nerves are shot to bits!! Eating and sleeping has been nigh on impossible.

  2. #12
    Forum Member Ellie's Avatar
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    Sorry you find yourself here Sheila but a warm welcome to you.

    Your diagnosis is still very raw, so it’s only natural your head is all over the place - it does get easier with time.

    I found counselling helped me in coming to terms with my diagnosis and, given that you say you’re an anxious person, it certainly should help you and I suggest you give it a go.

    I wonder if an antidepressant might help you sleep and, in turn, your appetite, even in the short-term? Not being able to sleep or eat well isn’t ideal - we need as much energy as possible to deal with our condition!

    Wishing you and your family well.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #13
    Forum Member Terry's Avatar
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    Hi Dawn and Sheila, welcome to the forum,

    It normally takes a couple of months to get your head into gear after a diagnosis such as this.

    Please feel free to ask any questions or share things with us.

    Best wishes, Terry

  4. #14
    Forum Member Kayleigh's Avatar
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    Nov 2018
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    Welcome to the forum Sheila,

    I feel for you, because the way you are feeling now, is how I felt when I was diagnosed last year. I felt so anxious about things that I couldn't eat, sleep or relax and I kept bursting into tears. However, since joining this forum, I have managed to come to terms with things, and me and my family are able to make the most of every day, as positively as we can. I have also received wonderful support at monthly meetings of my local Mnda group.

    Understandably, everything can feel overwhelming at first. I found that speaking to my local MNDA Regional Care Development Adviser, soon after my diagnosis, really helped. For some friendly support and advice, you (or your husband) could speak to someone at the MND Connect helpline, and either of you could contact your local Adviser. For further info about the local Advisers, please click on the link below:-

    http://https://www.mndassociation.org/getting-support/mnd-regional-care-development-advisers/

    You will get a lot of friendly support from the lovely folk on this forum. Please feel welcome to ask for support and advice, whenever you would like to.

    Very best wishes to you and your family,
    Kayleigh x

    P.S It is important that we try to keep our strength up by eating well. I have found that nutrition drinks, such as Complan with full-fat milk, have helped to boost my calorie and vitamin/mineral intake. Your GP might prescribe some for you.
    Last edited by Kayleigh; 9th February 2019 at 19:10.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  5. #15
    Forum Member Barry52's Avatar
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    Mar 2012
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    Hello Sheila and welcome.

    As others have said it will take a while to be able to move forward but you will adjust. Make sure you have a good care team to support you and any advice you want will be answered here.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #16
    Forum Member Lynne K's Avatar
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    Nov 2017
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    Hi Sheila, welcome to the forum. Chat soon. Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #17
    Forum Member
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    May 2018
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    Hi Dawn and a warm welcome to the forum,

    I am glad you dipped your toe because this is a good place for emotional and practical support. There is occasional humour and also meltdowns and frustration. I am sure we all feel like that sometimes. Its good to chat to people who really understand.

    Take care and well done to your son.
    Love Debbie x

  8. #18
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    May 2018
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    Hi Sheila and welcome to the forum,

    The early days are such a shock and everything seems so scary. Its overwhelming! I am so glad you have support from your loved ones and I hope you will get support from the professionals too.

    It probably doesn't seem like it now but you do find a new sort of "normal " and laugh again. I was diagnosed a year ago and initially I just couldn't concentrate on anything, like TV or books but now it's not the first thing I think of when I wake up.

    Take Care and keep in touch.
    Love Debbie x

  9. #19
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    Feb 2019
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    Wow and thank you all so much for the welcome and the kind words (and Advice!) It's all very much appreciated. My GP recommended this site and I am so grateful I've joined. It's incredibly reassuring to chat to fellow sufferers.

    Ellie! I agree. I think some counselling would definitely help. I am taken antidepressants at the moment (Amitriptlyine). It would be nice to get some more sleep in time.

    Once Again! Thank you all so much for the warm welcome and I will definitely be popping up from time to time for advice and chat.

    Much love

    Sheila

  10. #20
    Forum Member
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    Jul 2018
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    250
    Welcome Sheila, I am Sheila too, My Husband was diagnosed July 18. It's very difficult I know. Lots of support on here x

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