sensory overload = social deprivation? bummer

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Oct 23, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Anybody here too tired, dopey, overloaded, fazed-out to talk to anyone? I live with my dad and brothers, and I have to close my eyes if they just walk across the room. I now have one of the quietest families in Canada.

    Just makes me nuts sometimes. For once I'd like to have a conversation with someone who isn't very quietly jabbering on the other end of a phone line. I had to brush Dad off this morning because I was trying really hard not to faint so I could finish chopping some zucchini (I usually can't stand at all). I couldn't say goodbye to him just now as he headed off to work. I just had to close my eyes and put my hand on my forehead and chant something like 'soon he'll be gone, soon he'll be GONE' to myself until he left the room - very quietly.

    Sucks. I used to sing karaoke with this guy.

    I don't want medical advice on this. Just want to know if anyone else has their cognitive symptoms interfering with their social life. And, for the record, I am not social phobic or anyhing - it's just that I'm as functional as a hunk of freshly-ground hamburger. CFS sucks!

    ((ugh!)) Shannon
  2. mindbender

    mindbender New Member

    One of the biggest problems I have with family and home is, they say they understand the predicament I'm in with this DD but, the first time the weather changes and I'm parilized by it, I get the looks of why didn't you throw in some laundry while your sitting there doing nothing all day.

    My wife finally got a toxic reaction to perfume the other day, and she actually apologized for not realizing what I had been going through.

    In the end I believe I will be alone. Funny, that doesn't bother me.

    I'm not sure this pertains to what you're going through, if not please disregard.
  3. Shannonsparkles

    Shannonsparkles New Member

    So, I take it from your bio that you're not to be taken serriously? Sorry, the it's more fun if I do take you serriously. :) Love the drawing, by the way. I didn't do the one in my bio. Scanner problems, or I'd add something of my own. I'm down to some very stylised ballpoint drawings on lined paper these days.

    I feel relieved when everyone else is packed away in bed or off at work. Knowing they are in the house is like having a jack-in-the-box ready to spring out at any moment. I'm alone most of the day... and it doesn't bother me terribly. I couldn't have it any other way.

    I don't think the folks could ever understand. It's so out of this world. Don't feel bad over the laundry, MB. I used to run the domestic end of this operation. Now someone else takes care of it, bless 'em. I still have awful urges to help out with the chores, but there's not much I can do while horizontal and dazed.

    How's the CFS name discussion going? I haven't looked in in awhile, my dear Nightengale. ;) Yeah, I remember you!

    ((tc)) Shannon
  4. sascha

    sascha Member

    'excitatory neurotoxicity'- very apt.

    i get adverse reactions to bright lights (bright sun), loud noises, even small noises can irritate me excessively, heat..

    i generally hover right around operational threshold; sometimes a bit up,and i can go and enjoy; sometimes below- and that's when i can't bear much of anything. i just want no outside stimuli coming in. it's even hard then to talk on phone with a friend. talking takes too much effort; listening takes too much effort and agitates everything inside.

    yes- it's very ughy living like that.

    i seem to be in a bit better phase right now, which i greatly appreciate. But i don't take it seriously because this is the way things have gone for years. i may backslide at any time. but in the meantime i'll go and enjoy...

    good luck to you- Sascha

  5. mindbender

    mindbender New Member

    I like that name, "Shannon"

    Ball point drawings have their merrits. People don't understand their difficulty in a good outcome, the drawings I mean.

    I dabbled in color pencils next. I had problems getting this new pic on my Bio. I'll have to try again.

    Ball points are tougher than pen & ink

    I'm taking off now but I have to tell you that when I was younger I had a girl who actually asked me out. I didn't take her up on it. One of the many mistakes I've made.

    Her name was Shannon.
  6. mindbender

    mindbender New Member

    I still like my first pick Type "A" Parkensons.

    I'm sticking with it.
  7. Cindyvr

    Cindyvr New Member

    I read what you wrote and it was like a light bulb going off! I get so unnerved around people most days. I cant seem to function with so much going on or off around me. Just need quiet and calm and I get to be a nervous wreck if I can't get it. I usually try to go back to bed and pull the covers over my head and pray that everyone in the house would just disappear. To me it just seems like the only thing that will help!! LOL
    Talking on the phone is rally hard for me these days I cant seem to focus on what the person on the other end is saying. But I am starting to do that with a person to person conversation so it's starting to freak me out some.
    I also tend to ramble when I am able to talk to someone. Things come out wrong or twisted and the conversations I have really go no where so I have these people looking at me and I know they are thinking...What the heck is she on???? What do ya do?
  8. Scapper

    Scapper New Member

    Yes.....Yes.....and Yes!!!

    I find it sad to see in black & white how I actually have to survive this illness. Plain & simple.....CFS sucks!

    What works for me is being in my bedroom with the door closed and keeping all outside noise out. Needless to say, or as you know, it gets LONELY :(

    I also feel bad for my mother. My patience with her is so low b/c I cannot tolerate any noise. She tries so hard to be quiet, but just the clang of a pan, her voice elevated too high, or the sound of the vaccuum, sends my nerves over the edge.

    Not easy living with this, or, on the other side of this illness.

    I don't have a social life at all. It's all about "survival." On most days talking on the phone wipes me out beyond repair. On a good day, if I can talk more, I do. I too tend to ramble like Cindy (above) and I can "feel" myself doing it, but can't seem to focus enough to change it.

    Crazy illness!!!!

    You're certainly not alone!


    [This Message was Edited on 10/23/2006]
  9. marsupialmama

    marsupialmama New Member

    me too. I always did hate crowded places but now it kills me to have a bunch of folks come over all at once. I like them in ones and twos and preferably sans kids (especially the hyper variety).

    I find when the TV is going and the kids are yelling at one another and the phone is ringing etc etc I just want to go into a shutdown. right now one kid is cooking rice crispie squares and the other is doing somethign with balloons and the TV is on and I just do not want to be there. So i am hiding in another room.

    I can't follow conversations well when there is a lot of background noise too. Don;t know if that is me getting older, a fibro-type things or my curmudgeonly nature.

    I'm also very relieved when they all head out the door to school and work!

  10. tinktink

    tinktink New Member

    yes .... I used to love having noise and activity going on around me. Now I rarely turn on the tv or music and I grow weary of crowds and noise very quickly. It' hard because I loved being a social bee and getting out there. If I can get some quiet time it helps me face the times that are not quiet. I try and take breaks from noise when I get the chance and that helps a little bit. Best Wishes Diana
  11. Pennygirl2

    Pennygirl2 New Member

    Oh yeah, I am the same. I am getting so confused trying to talk to people on phone. Hubby has tv on all the time because he is on couch most of time when home, due to being on dialysis. I can't stand the NOISE and he SURFS the channels constantly and that kills me.

    I just feel like a fool if I have to handle something like getting our new phone connected with the phone company. Just get embarrassed because I can't understand either the words or the meaning of most.

    It is hard for me to be on computer, but I try to read and reply to at least one post a day. I am so sorry you all are doing same. It is indeed terribly lonely. I like Cheneys thing about excitatory "something" also. Can't remember the other word of course. Oh well, I TRY to keep positive and smile. A big hug for you all. Penny
  12. rockymtnmom

    rockymtnmom New Member

    Wish there was an icon reminiscent of "the scream" - that would be perfect for my state of mind, provided it is a SILENT scream. My four children (8 y.o. triplets and a 6 y.o.) just got home and my quiet flare-filled day has only gotten worse. I feel terrible about this, these children didn't ask to be born, but to be around them right now is simply torture. If they are laughing and happy, it is to loud. When they are quarrelling and loud I fantasize about doing violent things (this is simply a fantasy I would NEVER act on)to get them to shut up. Having FM and CFS with younger kids is very challenging. Then there is my poor husband. Leaning over to kiss me while chomping on an apple - I simply recoil. Sometimes all I can do is put my hands over my ears and bow my head - but it doesn't seem to block it out... I feel like I am hearing with my whole body when I am flaring, and when I am not, I am still sensitive. Sometimes I absolutely exhaust myself trying to put dinner on the table and all I hear is "yuck!" "I won't eat this!" etc. etc. It is so hard. I love my hubby and my kids, but FM/CFS makes it so hard to be nice and empathic to others. As for phone calls, they take too much energy and even the ones I enjoy I find myself regretting as I lay and recover. Yes, this all can really suck and it is hard to fight the anger at times.
    [This Message was Edited on 10/23/2006]
  13. Ranigar

    Ranigar Member

    Sometimes I try and sit in the same room with DH as he watches TV and all he has to do is look at me and knows the TV is on to loud for me.I stay until I can't stand it and apologise and get out of there.My FIL is 91 and you have to yell to be heard.Sometimes I have to grit my teeth to not let it show that he's talking to loud.Another thing is space.I can't tolerate people leaning in to close to say something.I startle really easy too.
  14. Suzan

    Suzan New Member

    I do spend alot of time alone, and it never has bothered me to do so. But several times now my 23yo son has had a conversation going with me and it took so much effort to stay on task and participate in it. I was glad when we were done talking! But I don' t ever want my children or husband to feel like I don't WANT to talk to them. So, I put effort into it...but more and more I find that I don't have the energy or ability to concentrate on conversations like I did before this illness took hold.
    The saddest thing to me is that being alone in the house has become so much "better" for me...less stimulation...less anxiety and pain...UGH.
  15. darude

    darude New Member

    I feel the same way. I used to be soo sociable and outgoing but not anymore. Having anyone around I find stressful. This morning I was making some coffee and trying not to pass out also. Hubby was chatting and I was saying in my mind to Hurry up and go to work. Then when he left the phone started ringing off the hook so I'm trying to keep up with these conversations. Then the lady I got to clean showed up and constantly was asking questions. I was standing in front of her and felt as though I was gonna fall and couldn't even answer her. I'm starting to find it MORE stressful having her here. Sure you can understand. Anyway ALL gone now and I'm sitting here relaxing with cup of coffee and feel better. My husband will be off next week. Should be looking forward to it but I'm not as I end up feeling stressed as he loves to chat!!!
    I'll find him some chores to do and tell him to just rest up rest of time. MMMMMMmmmm days of CFS'ers they do suck!!!!!!!!!!!!!!!!! luv Annie the Londoner
  16. Scapper

    Scapper New Member

    TRIPLETS??!?!?! WOW!!! THAT is sensory overload :)

    You really deserve a huge pat on the back (well, a soft one would be nicer :)
  17. Britt2

    Britt2 New Member

    Yes, I've been having the same sort of problem. I used to be a social butterfly but ever since CFS, I can't even answer my phone when it rings.....the thought of listening to someone natter on about nothing for an hour just wears me out thinking about it. I also can't talk with anyone in my car when the radio is on...too much going on. And I find when someone asks me about what med's Im on and that I should try 'this and that' one cuz their "cousin's nextdoor's dog walker tried it and they have CFS and it worked great" .... I just get so overwhelmed with the thought of having to explain everything from scratch, I dont even bother..... Its not good. I miss talking with friends and family and just find now I have a very short attention span.
  18. 1sweetie

    1sweetie New Member

    I truly identify with you. Recently I have tried several things that have helped. It is far from gone but I am surviving better.

    One is Klonopin which helped. I then added Boise noise reduction headphones and hook them up to my lap top and listen to soothing music, and what has helped ME the most is a TINY dose of the drug Abilify. It was intended to be used for Bipolar but I am using it "off label" and it has helped with the terrible sensory overload, some with the cognitive and energy, and with my mood. I take less than 2 mg. which is less than they would start a child on.

    It is similar to the drug that Hayleycole is taking that has helped her so much.
  19. desertlass

    desertlass New Member

    I can't tell you what it means to me that you all shared these feelings. I have tears running down my face, because I thought it was only ME! I thought I was a complete failure as a human being for not being able to tolerate even the sun coming in to my bedroom, or talking on the phone to my best friend, or sometimes even being lightly touched.

    I used to be a morning person, I used to get together with friends every day, I was involved in my kids' school and was surrounded by dozens of kids and loved every minute of it. (Not ALL day, mind you-- I wasn't crazy!) ;) But now I can barely tolerate a five minute conversation with them and on bad days, I just have all of these fantasies of going to some quiet commune or convent-- but I don't relish the idea of having to sit up for hours on end for meditation or hearing bells ringing, so even that wouldn't work! And yes, the sound of a TV from the other end of the house is just a killer.

    Thank you so much for the tip on the headphones, and the meds. I am definitely going to ask my doc about the Klonopin, because I've seen this come up in many places in various threads. The other med is interesting, too. Exhausted but wired. That is exactly it, whoever said it. I told my husband that when he sees me up and around and talking, it's like I've got my finger in an electrical outlet and soon I will be whirling around like the Tasmanian Devil. It is a horrible feeling, not at all euphoric-- like an adrenaline/caffeine overload, not an "up" feeling. The "bipolar" med would make sense, then, even if one didn't have that.

    Thank you again so much-- you have really helped to save my sanity!! And the best thing is, you all did it so QUIETLY!! :)
  20. gurlinottawa

    gurlinottawa New Member

    I have now become better aware of my limitations in this area. It took years, and as my symptoms and limitations have progressed, I have to just tell people, I cant go to partys, to many people, sensory overload, I also have ADHD which always made it hard in the first place, but for years, I self medicated with drugs and alcohol, now I know better.

    the hardest is with my son. He is a BIG 6'2 teenager and I mean, to him I look "normal" and teenagers are kinda in their own worlds anyway so ... he bugs me, when I ask I need quiet for example. I am a student as well so when I do my school work it takes me like super extra brain power just to concentrate to get my work done.

    Have you tried ear plugs as far as noise go? I use them all the time. My first year of classes was especially hard getting used to so much, I wore them everywhere. I live downtown, so its noisy here.. I sleep with them, read with them.. also when I go out into the world, I use my MP3 player and have like meditation music on, or whatever I can listen to that day.. but it helps to limit the sensory overload, kinda focusses it on just that one sound.

    as far as people go.. all I can do at the end of the day.. is not talk. I dont ssee people alot.... my mom seems to have a hard time believing this.. like "why dont you call!!" people just think Im lazy, or ignoring them or all the bad labels this world gives me.. I swear, sometimes i wish I was diagnosed with cancer, or soemthing people knew about or would take seriously, or they could see, then, people would be like, helping... not just .. doing what they do now..

    hugs to you... thanks for the rant encouragement.