Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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Cognitive

Discussion in 'General ME/CFS Discussion' started by sunshine44, Jan 10, 2019.

  1. sunshine44

    sunshine44 Senior Member

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    So, the past 5 months is the worst my cognitive function has ever been. Really rattling. I also had some pretty serious crashes that left me wheelchair bound then bedridden though.

    So just looked up alzheimers to see what the difference between me and them is....um BAD idea!!!!

    Wish i could take that move back bc late stage that sounds like whta i am going through, trouble controlling bowels, bedridden, agitation and easily disoriented.

    Oh brother. Why did i do this search.
     
  2. taniaaust1

    taniaaust1 Senior Member

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    I certainly think my mental state is affected by my cognitive function too. I remember after I got approved for a disability pension on their points system and someone ending up posting me a link on how their points system works. I could of passed for disability pension approval just based on the cognitive function section by itself as I had all the symptoms listed including mood swings and agitation.

    In the past two weeks, Ive wasted so much food.. defrosting things in microwave and forgetting then I've done that so they sit there for 18+ hrs out in the heat and then need to be thrown out.

    Last few weeks I've struggled with my bank card, not just struggling with pin numbers but also actually forgetting how to use a bank card, others have had to ended up helping me as I'm not figuring out what is wrong at the time.

    eg I put bank card into the machine thing and forgot I had to put in numbers!! and the checkout girl ended up prompting me with "are you going to put in your pin", I was just there staring at the thing, waiting for it to work.

    Then we went to another shop and once again I forgot how to work a bank card, that time I'm going to my worker "there is something wrong with this machine, it wont work" . I forget now exactly what I was doing but it was something ridiculous (I think I may of been trying to work the machine without my card being in it).

    Then after that we went to the bank and I almost melted down crying when I found myself unable to use my bank card again (I was getting quite stressed about it). This time I'd remembered to put my card in and remembered I needed to do my pin number but the machine was coming up saying things which usually I would understand but my brain was not making any sense of it at all (I was confused by my accounts). So one again, I'm staring at it unable to figure out what to do.

    The bank teller as I'm just looking at the thing, is going "put in your pin" "put in your pin" "put in your pin" but the machine was not at a the point where I could just put in my pin. I think my support worker may of ended up helping me as I was about to cry as I just could not figure it out (couldnt work out what I had to click for account).

    One has to remember so many things, just to be able to use a bank card.

    I get taken out in my wheelchair shopping. my brain starts out kind of ME functional but towards the end of the shopping trip after an hour out, its near non functional, Im brain dead and Im struggling with very basic stuff. Thank God I get driven there, if I had to get myself home from there, cognitively I do think I'd be struggling to do so.

    (I left my shopping list behind too even after my support worker had done a check to make sure I had it, I most of lost my focus and put it back down, she had to leave me with my other support worker while she drove back home to get it).
    .........

    One of the worst things I did with brain fatigue, was I went to the toilet and forgot I had knickers on which had to be pulled down. So I just sat on the toilet while still in my knickers and went to the loo like that. Realising what I did only when I went to stand back up (only cause by that point I had knickers which was all wet).
     
    Last edited: Jan 11, 2019
  3. jesse's mom

    jesse's mom Moderator

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    Last year when I crashed so hard and got even sicker; when I got out of the hospital I could not read at all for a few weeks. I forgot how to knit, then gradually taught myself again. It all came back very slowly. It is still coming back. I was at the Dr the other day filling out forms is so hard. I forgot my SS# and I have had that in my memory since I was 15 years old!

    It is coming back, not every day.. not during PEM.

    Learning a new skill is still very hard.

    The good part is that I have learned to be much more humble and ask for help. I have been learning to accept help. These have been lifetime struggles for me!
    I hear that you are afraid @sunshine44 , please don't lose hope!
    :hug::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart::heart:
     
  4. andyguitar

    andyguitar Senior Member

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    It's a bad patch @sunshine44. Not dementia. Have a couple of these :hug::hug:
     
  5. sunshine44

    sunshine44 Senior Member

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    thanks! You are most likely right :)
     
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  6. sunshine44

    sunshine44 Senior Member

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    thank-you. This makes sense. Whew. This is heavy stuff when it hits your brain. Thank for the support.
     
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  7. sunshine44

    sunshine44 Senior Member

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    blessings of health your way, its so much. Thank-you.
     
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  8. Shoshana

    Shoshana Northern USA

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    @sunshine44
    I just now saw this thread.
    I haven't read all of the responses yet...but I will say, that there are so many overlaps of symptoms between different illnesses,
    that looking up an illness like alzheimers, we are sure to find many overlaps, but that does NOT mean we have that.

    It does feel very scary, when I have done that type of search also.

    But most likely is NOT that, and NOT other things either, that we could look up, and find lots of our symptoms.

    So sorry that you have to wonder and worry, because you don't have enough info about your actual condition.
    That makes the condition and the symptoms all scary, in addition to how hard the symptoms are in the first place.

    I do think that this illness we DO have, does effect our cognitive, and it is very difficult for me too.
    And it does effect our anxiety level, also, from my experiences.

    Yet, that doesn't mean we have some other specific illness, and it also doesn't mean that we will not improve, or have some better times.
    We will keep on hoping that for you, and are here for you and with you, in the meantime
     
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  9. taniaaust1

    taniaaust1 Senior Member

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    I hope your brain improves too sunshine.. as jessie's mum said "do not loose hope". The symptoms just go so up and down with this illness.
     
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  10. jesse's mom

    jesse's mom Moderator

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    I try not to look up symptoms in sites like Mayo clinic and the top Google searches.

    Thinking of you today:hug:
     
  11. Desertstorm

    Desertstorm

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    I forgot what I was going to post...:love:


    Actually when I am crashing like now I sound to myself exactly like my dad of 87 does. Not that it’s a bad thing because he is such a great man but still...when you say something and your kids give you that sad smile look it gives one pause. I sure hope I never did that to my own dad.

    My story of love. My mom is chair and bed bound from another medical condition. My dad, a very accomplished author and academic has now devoted 100% to her care. That’s love. My wife, ran her own company for years as did I plus one we both owned in the Bahamas. We sold them all and she has devoted everything to my care giving. So hard, her friends drift away her interests put aside. That is love. Would I do the same? I sure hope so.
     
    Last edited: Jan 12, 2019
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