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Thread: Forum Fatigue

  1. #11
    Forum Member
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    You are completely right, katrina. I remember when I first joined, feeling like everyone knew everyone. It doesn't take long for you to feel accepted - look at you now! I couldn't have done without your input when I had bother with peg feeding,

    We all help one another, don't we? We have as many regular contributors who are carers as those with MND

    Whether it is because of the terminal prognosis or the evil, vicious, nasty way this disease presents itself, but it seems to bond people - just as though we are out together fighting a hidden enemy

    I count so many on this forum my real friends. I could never cope without them!

    Much love

    Joycie X

  2. #12
    Forum Member Katrina36's Avatar
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    Hi joycie,, I hope you are well,, and you are having more luck than recent... Thanks for your lovely comment... I never really thought that I've helped anyone.. More getting advice from people, so it's nice to hear that I maybe helped you a little .....

    I know I've had loads of help from people on here... It's nice to know it's not just my dad going through this... And I find it difficult to watch him go through all this,, and knowing there are other carers aswell is good... I think I prob would've gone mad if it wasn't for this forum .... Katrina x

  3. #13
    Forum Member WendyWooG's Avatar
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    I can understand that it must be difficult over time. I am still going through the diagnosis process but the help and comfort on here has been invaluable. That sense of understanding and being in it together just helps me so much. I don't post much but am gaining confidence because of all the open friendly people on here.
    Wendy x

  4. #14
    Millie32
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    I agree with Wendy. It is such a comfort to be able to contact people who understand and talk about things that you aren't able to with your partner/family. Even I, who am still struggling through the diagnosis process, have been welcomed and given good advice. I know that if the worst happens there is somewhere I can go where you can say exactly how you feel.

    Where else would one turn? I can understand it is difficult to learn of members passing though.

  5. #15
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    Wendy, just keep posting. You will find you can discuss things with us that you may feel hard to broach with nearest and dearest. Whatever is bothering you, you can ask away and someone will have some experience or be able to point you in the right direction. Much love. Joycie. Xx

  6. #16
    Forum Member FlyingSoupDragon's Avatar
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    Quote Originally Posted by Ellie View Post
    Yes Steve, it's hard to see people come and go on the forum. If we need reminding of our mortality, we get it slapped squarely in our faces every few weeks.

    But, for my sense of self-worth, which took a massive nosedive when I became "invisible" when I could no longer speak, the forum is a way of restoring it to some degree.

    Ellie x.
    Ellie and Steve touched a nerve. I love language, debate and good conversation with friends and those I respect - don't we all. This stimulating flow relies on skills - presenting reasoned and well structured arguments, giving the floor in turn, listening and evaluating before contribution and so on. In a sense participation within a forum community relies on just the same set.
    As I enter the final stages of voice loss I'm reflecting on how best to continue to take part in this evolved human gift. A drastically curtailed vocabulary and laboured, barely audible burble blunts the verbal rapier a tad. Like Ellie, I'm feeling this loss, for me it sits above all the rest.

    This brings me to the forum and Steve's topic header. Forum topics and posts inevitably involve repeated views, circular arguments and occasional lip biting. I don't have loads of time for too much of it these days, but hearing familiar voices and enjoying a sense of community with those who have shared or worse experiences is occasionally beyond price.
    Toodle pip!

    Norman
    Wordpress Blog

  7. #17
    Forum Member Barry52's Avatar
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    Wise words Norman, even if they are written and not spoken. At a recent meeting of patients and medical professionals someone said our voice is part of our personality and I had not thought of it in that way but now I am loosing mine I can see the point.

    We are fortunate these days to have technology to allow us a voice but it will never replace our personalities.

    Time for bed as Zebedie would say.

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

  8. #18
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    You've definitely helped me Katrina so thank you. I always feel bad posting to this forum because I only do.so when I feel down so feel like I'm being really miserable when I'm not even the one with mnd. Feel like I need to apologise for it but I'm not sure who else to talk to as I don't have any family I can talk to about it

  9. #19
    Forum Member Katrina36's Avatar
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    Just like you have helped me tabby,, you help and you probably havnt even realised you've done it ,, I feel guilty sometimes posting on here as I don't have mnd either,, but we are ones watching our dads disappearing to mnd,, it's hard also,, alot of people don't talk to there family about it,, so your not alone there,, I don't really talk much to my family about it now,, usually just me and my dad talk,, when he wants to and asks me questions.,, but apart from that I only have everyone here who takes the time to listen to me go on lol 😳.... Katrina x

  10. #20
    Forum Member Alpacas's Avatar
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    This forum is great for those of us who are just getting over the shock of diagnosis. Tips and the way around problems are also of use. However I personally think that the thing that must bother most of us is "Frustration" especially if you have always led an active life. I might sound insensitive and I don't mean to upset any fellow sufferers but there are many worse diseases to end ones life. On this I speak professionally. Sure we all get pain but it is rare that it is constant. Terminal Cancer once it progresses can be exceptionally painful and debilitating and apart from drugs there is no other way around it. I would rather be frustrated than in constant pain but perhaps I'm just a coward !!

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