What to do when life speeds up and you're stuck in neutral?

Discussion in 'Chit Chat' started by mezombie, Dec 14, 2006.

  1. mezombie

    mezombie Member

    Wow. I miss my mind!

    I keep going to various events, like my book club, and just keep getting reminded that everyone else is speeding up while I (or at least my mind) is stuck in neutral.

    I just received a nasty email from someone in my book club complaining that it took me 48 hours to let her know what books we'll be reading--starting January 21! Yes, this is urgent information, according to her!

    My memory is so shot I couldn't remember, and I also couldn't figure out where I put the list of future books.

    And, frankly, looking at a computer screen triggers some of my worst symptoms. As I'm not working, I also don't check my email every minute. This is unheard of, apparently.

    I can't even keep up with the message boards half the time. I used to be able to read and respond to the research posts, but that's gone (at least for now).

    When I go out in the "real" world and try to have a conversation, I lose track of what I've said and can't remember basic things. I seem to have most in common with people who've sustained brain injuries.

    The point is, I'm not getting better, and definitely not mentally quicker. In the meantime, everyone I come across seems to be speaking very, very fast and has a Blackberry at their disposal for quick information retrieval. The expectation is that I'm just the same. Ha Ha Ha!

    I'm just trying to figure out what additional adjustments I have to make to take advantage of my ability to get out of the house now and then without finding myself in a situation that is way beyond my capabilities. Volunteering seems to be impossible because I am totally unreliable. I never know when I'll be well enough to get out.

    Any suggestions? Advice? Support? I just feel awful at the moment.
    [This Message was Edited on 12/14/2006]
  2. fivesue

    fivesue New Member

    It sounds like you are a very bright person who is having a terrible time right now.

    Do I have any suggestions? No, I don't. I find myself in a similar situation at times, and it seems easier just to stay at home.

    NOw, I'm not saying stay home, and I don't always. But when it comes to trying to keep up with everyone else who is still in the fast lane when I've had to exit to the parking lot mostly, I just have to accept me and not try to keep up with my former traveling companions.

    Make any sense? I've lost friends because of this, but I just can't keep up. I do what I can, husband is a great help in getting me out and about, and let the rest go by.

    I don't really think anything I've said is very helpful, but I do want you to know that I sympathize with you and your situation. I wish I had some magic to make all of us like we used to be, but I checked my pockets...nothing.

    Just my best wishes for a good way for you to solve your brain fog problems.

  3. victoria

    victoria New Member

    the normal answer would be, if you're stuck in neutral and you face an uphill you drift until you stop, and if it's otherwise, you go downhill... until you do drift to a stop? or worse, crash...

    I prefer the drifting to a stop; something I've done, and yes I've lost friends etc that way. Oh well... it's sad and still is, but, thankfully I have found new friends thru a local support group, that does help a lot to be with people who can take me as I am, or not, and not be put off by my not participating at times.

    Any other contact with people is understood to be on my terms out of necessity... well, at least it is mostly understood. There are still inevitably people who don't understand at some point, but newer friends are better in general about it.

    but I have to say, finding the local support group has had the greatest benefit/comfort for me.

    I don't know if this helps at all, but, I think we've all been there and still are, at the bottom of the hill.

    all the best,

  4. joyfully

    joyfully New Member

    Tell her that you understand her frustration---- and if she thinks it would help, that you would be willing to turn all of your responsibilities over to her so they will be done in a more timely manner. That ought to shut her up.

    I'm going to turn 60 next month. One of my "life's lessons rules" is as follows:
    If someone criticizes the way that you are doing a volunteer job, volunteer or nominate them to do it instead.

    (you don't have to do it snotty or huffy manner, it is actually more effective if you act sincere. I love to watch the person do an immediate back step and come up with all kinds of excuses why they can't do it.[This Message was Edited on 12/14/2006]
  5. caffey

    caffey New Member

    I know that is a terrible place to be. I have learned to write notes to myself as reminders. The only problem is I will write a date and time and forget where I am supposed to be or a phone number with no name. i sat in the docs office and read 100 pages of a John Grisham novel and when I got home I couldn't remember any of it.

    There are lots of reasons for this happening. Don't feel guilty. You can't make your body and mind do what it won't do. Don't let anyone pressure you or make you feel guilty. maybe it is time to take a sabbatical from the book club. Just pace your self and if people don't understand who needs them. It sounds like your problem is common. To encourage you. I just got approved for a drug study and they said they send stickers to put on your calendar to remember when to take it and a timer to tell when to take the next dose every 2 weeks. So just relax and do what you can. Sorry for babbling. P.S. Could be worse your mind could be in reverse. lol. Made you laugh eh?
    [This Message was Edited on 12/14/2006]
  6. larryh

    larryh New Member


    I don't think we can afford to waste our energy on other people's emergencies. We have to use our energy on the things that are important to us. Yes, a lot of life is going to pass us by, but how important is it to us. I only worry about the things that I really care about. I have even had to drop somethings out of my life because there just is not enough of me to go around anymore.

  7. Marta608

    Marta608 Member

    "When I go out in the "real" world and try to have a conversation, I lose track of what I've said and can't remember basic things. I seem to have most in common with people who've sustained brain injuries."

    Yes! Scary, isn't it? The other day at the shelter, I volunteered to make calls to the folks who've adopted animals - how's it going? any questions? etc. Follow-up calls! I knew I'd think of the term eventually.... I carefully, I thought, wrote down the information but when I got home I saw that I'd missed phone numbers on many of them. And I used to run businesses!!! Brain? What brain??

    The only way to avoid the realization of what our illness has cost us mentally is to stay cloistered within the walls of our house - but that's not good for us. You might try an animal shelter a couple of hours a week to see if you like it and if you can limit your time. Animals don't care what you used to know, just how well you pet - and feed and change litter boxes and..... Seriously, you can request office work. HAHAHAHAHAHA.... Whatever you do, be specific about your time constraints. (You might want to see my reply to Lindyl39.)

    On the other hand, don't try anything if you're in a flare. You'd just feel worse and become more discouraged.

    I think it's really important for us to stay involved with something. You just have to keep looking to find what it is for you.


  8. Roseblossom

    Roseblossom Member

    I think it's wonderful that you volunteer. Too bad about the impatience of your colleague - hopefully she felt like a jerk later, for being so rude.

    I make clear to everyone that I can't commit to anything that might be time-critical.

    There is plenty of other stuff that isn't time-critical, that volunteers can do to make a difference for someone's happiness.

    Take a deep breath and feel good about your contribution, M :)

  9. Greenbean7

    Greenbean7 New Member

    Neutral? I'm usually in reverse!

    Hope things go better, but remember we're all in the same parking lot!


    Stop and smell the puppies!
  10. mezombie

    mezombie Member

    I hope to write individual notes to all of you when I'm able, but in the meantime I did want everyone who responded to my post to know how grateful I am for your support and suggestions.

    Brain fog is my worst symptom, hence my username! Unfortunately, this is not a flare. This is the way I am, and believe it or not, it used to be worse. I'm glad this symptom has improved somewhat.

    What I totally forgot is that the rest of the world was speeding up at an exponential rate! Everyone is "on" 24/7, and is able to communicate with each other via gadgets at a moment's notice.

    I was around 30 when I came down with CFS. Sixteen years later, with a good ten years stuck at home, I find it really shocking at how "fast" everything has become! Living in a major metropolitan area does not help.

    I will find other outlets. The one that sounds most attractive right now is a meditation group that meets weekly. It's a "drop in if you're able" group, which suits me well! It will get me out of the house, I'll be with people who value the slow lane, and it will benefit my health. How's that?
    [This Message was Edited on 12/16/2006]
  11. mezombie

    mezombie Member

    Thank you for your supportive post. It helps knowing I'm not alone, and that you understand what I'm going through.

    I seem to be exiting at the parking lot more and more often! But, as I said in my "thank you" post above, I will continue to attempt some sort of social interaction that is at my speed (slooooow!).

    Sadly, giving up the book club means giving up something that has sustained me for ten years. There are still nice people in it. Unfortunately, over the past year a number of very aggressive and competitive types have joined. I didn't expect a book club would turn out this way!

    So there's the grief component, and at a difficult time, as well. I think the holidays are stressful for all of us, and I often feel even more "out of the loop" because I come from a small family and came down with CFS right around the time my peers were starting to settle down, get married, and have kids. So I'm still single (hard to meet people when you're at home, lying down most of the time!).

    Thanks again for your kind words.


    Oh my dear, please don't fret..we've all been there..infact, my brain is on "pause" more than I'd like. One day while I was grocery shopping, I put my groceries in another person's cart..when I realized what I had done, I apologized to the man and explained that "I was in my own world today"..his reply was, "well, you better get out of there" with which I promptly replied, "why?..I know everyone there and it's a very friendly place"! yee gads, and to think I was driving that day!! LOL

    Don't give up your book club. Is there a chance that you might be able to start another club with a few of the members of the club you're in now who feel as you do about the new comers?

    Meanwhile, hang in there..you're doing just fine!!
  13. mezombie

    mezombie Member

    I was hoping to have more time to write more detailed thanks to all of you, but I'm leaving town for a week tomorrow...

    Anyway, please see my "Thank You!" post above if you haven't already.

    Victoria: Drifting at the bottom of the hill...that sounds familiar, LOL! I'm glad you found a good support group; unfortunately mine is 30 miles away.

    Joyfully: The woman called me a b****! I wouldn't suggest she run the book club because I have friends in it who would have to deal with her then!

    Caffey: Yes, you made me laugh! I do think it's time to quit that book club.

    Larryh: Oh, I so agree with you! This woman is such a drama queen. I usually avoid that type like the plague.

    Donnail: Thanks for responding twice! I, too, think that people today are heading for a fall if they continue to do nothing but compete in the fast lane. When do they relax? They don't. It's very unhealthy. You should be proud of the way you raised your children. I wasn't home-schooled, but also ended up in a very competitive field, yet very much on my own terms.

    Marta608: I love your story, though I'm sorry you're going through the same thing. Volunteering at an animal shelter unfortunately isn't possible as there are none within my (CFS limited) driving distance.

  14. mezombie

    mezombie Member

    Please see my "thank you!" post above, if you haven't already. I wanted to write earlier, but this Christmas stuff has just worn me out!

    Redwillow: I must have been very out of it when I volunteered to organized the book club! I can barely organize my own life anymore!

    Roseblossom: Thanks (blush). I do feel good about my contribution to the book club, and my long history of volunteering (I started when I was in high school).

    Greenbean: I think I'm in reverse, too--just haven't acknowledged it until now!

    Wildwoodwine: What a wonderful response to that thoughtless man in the supermarket parking place!
    [This Message was Edited on 12/20/2006]
  15. mezombie

    mezombie Member

    I, too, found my brainfog helped me when I was around mentally retarded people or people with brain injuries.

    I realize now I'm at a point where I need support from others like me, and will wait to volunteer until I take care of myself a bit better.
  16. findmind

    findmind New Member

    Well, you can see you're not alone.

    I too have bad brain problems right now; I think some allergy problems (mold) cause it.

    I take a 1/2 dose (50mg) Provigil at times I feel I shoud be more alert. I like the slow way it works and it gives me an all over alertness that I like.

    Well, mezombie, I don't join things either; I know my brain couldn't keep up with normal people. Since I moved, I thought I'd volunteer at VA where I get my care, but you know, I am realizing that I get thru my days with the energy I have and that's an accomplishment!

    I do spend time on the phone with other PWCs and my two kids and grandson, so that is energy that benefits me and others also.

    I seem to go though "phases" of the brain deadness; hang on, dear one, maybe "this too, shall pass"!

    Merry Christmas to you, and I hope the new year will bring peace and serenity to you. You'll be back soon I bet, listing articles that fascinate me even if I can't discuss them very well.

    Many hugs,