Anyone else find conversation/people difficult to cope with?

Discussion in 'Fibromyalgia Main Forum' started by shaz73, May 28, 2010.

  1. shaz73

    shaz73 New Member

    I ask this as an CFS fellow traveller...I'm finding having conversations with people and or dealing with people in general quite difficult at times, due to feeling so darn tired. I just recently got married (a month ago) and I adore my husband, but sometimes I just want to be left alone to rest. That probably sounds really ungrateful, and I'm not...but just wish I had more energy. Donn't we all on here?!

    Its not just my husband - I work part time and find the early mornings at work particularly challenging. Colleagues bombard you will info at just the time that the brain fog has yet to lift.

    I find that I have to ration the time I talk to people and that is not fair as I really like people and socialising. Its just if I do too much of it I really pay the price later... Have someone in my family who is quite challlenging to talk to, and is why I dont see her as much as I probably should or call her. Problem is, she doesnt seem to DO short phone calls!!

    Its all part of the "interesting experience" of having this diagnosis...

  2. HeavenlyRN

    HeavenlyRN New Member

    I think for me it's the brain fog. It's hard to concentrate on what someone is saying and thinking that I might have to actually REMEMBER what they're saying later.

    I'm a list maker. I'm currently out of work (hoping to go back soon) but when I was working I would always make lists. It was the only way I could make it through the day. Sometimes I would even stand there with a pad of paper in my hand and make notes as I was talking with people. I would be honest with them and just explain that I had to write things down so that I wouldn't forget. No one ever seemed offended.

    So yeah.......I share your pain!!!
  3. quanked

    quanked Member

    and sometimes for the same reasons. But another reason I do not like to talk much with people because I do not have anything in common with others for the most part.

    my life revolves around my bad days and my worst days and my good days and my medium days and all that fall bewteen. I do not have any plans like most people. I plan very little. I do not participate in what most other people participate in. I do not have the capacities to the things most other people do. Even in my volunteer work--the therapist I volunteer for has a life. I do not and it would take too long to explain my life, or lack of it, and I am not sure she really could ever understand. And she does not have the time and I do not have the time.

    She works with kids and families in crisis. She works with adults as it relates to the families. It's about horrific abuse, sexual abuse, trauma and more. I get all that. These dd's are another world that I do not even understand. As time goes by I realize that my life just does not fit anywhere but here. But even here it is sporadic and as my energy, understanding and drive permits.

    On a good day I can relate to normals on some levels but then when I find myself kind of going down a normal road I realize that I can only be there in a fantasy kind of way. I do not get go down that road except for a few minutes. Suddenly, I am tired, wiped out, I am reeling wtih nausea, I cannot track a conversation, I cannot remember what was just said a split second ago, there is an interesting thought, I want to grab it, analyze it, think about it, discuss it and whoops! It is gone! Damn, where did it go? The discussion continues but I am chasing something that was said a minute a go and I am loosing what is being said in the now. I am lost. A lot somedays. I hate it.

    But you know, I forget how much I hate it just about as fast as my feelings of hate rise. This is the upside of my poor thinking and poor memory. I let go of negative thoughts and feelings quickly because I forget, lol!

    I just pretend that I am getting it all. OMG! I just hope that no one asks me a question and figure out I am nowhere to be found. In some ways it is amusing (on a good day) and on bad days its just too damn sad.

    I too like and enjoy people or I use to. I rarely met an individuals that I could not talk to or that I did not like. Even when I clinical therapist working with chronically and severely mentally ill. I use to feel that I could learn something from anyone and find something to like in about just anybody. And I did.

    I miss those days. I have not thought about this loss in a long time. Now, I try to minimize my contact with people in public, on the phone and with friends.

  4. bobbycat

    bobbycat New Member

    My job use to take alot of communication however, I am disabled now. I rarely leave the house. When I go out do by the time I get home I am so tired I go straight to bed and I do not have CFS I have FMS as well as numerous other problems. I do not work anymore and when I do go out it reminds me of why I can't although the pain and other things keep reminding me also. I really feel for you. Don't make the same mistake I did and not say anything to begin with trying to hide it. By the time I progressed then it was hard to make them total understand and I still have to say to them I am sorry I am just too tired to talk right now. And since I waited so long I now have to get tough with them. I know no matter how many times I tell my mother this she just does not get it. I will tell her I have to take a nap and she will call ten minutes later. I finally told her I was going to turn my phone off if she kept it up and she promised me she would not do it again and then she forgets and does it again (she is 83.) Friends and family will say well if you get up and walk or get some exercise you won't feel so tired. I am so tired of hearing that. Boy did I get nasty on that one. It is frustrating. You need to level with the ones that know about what you have, explain it to them and if you have to remind them remind them. As far as your husband is concerned I would sit him down and expain to him gently that it is not him it is the CFS and give him as much info and just state you will have bad days. He married you I am sure he will be understanding. Also I would ask your Doctor for a neurophycologist (sp) test to determine your cognitive problems at this time this will help you keep track if you progressively get worse and if down the pike you need to file for disability it you will have a paper trail. I had one in 2003 and then in 2006 there was a big difference. I do not know if you have had one or if you need one but if you have some brain fog it might not be a bad idea. If you are have trouble with words or remembering them our getting them out during you brain fog times tell your Dr and request that testing I probably mispelled the word so ask people on here for the correct spelling as I cannot retain stuff that is another thing that happens. Sorry for the long reply just thought this might help in the long term.
  5. Bunchy

    Bunchy New Member

    I have a very big problem with this - less so with DH as he will often just watch a lot of TV or play on his Iphone but especially with my MIL, it has become such a big problem I hardly see her and FIL anymore.

    I agree with the person that said explain this before it is too late. I left it too late and now there is no opportunity to explain these problems to them. I have all but lost any kind of relationshipw tih most of my family because of this and other problems.

    I have had to demand that my DH no longer has his parents to visit here except on the very rare occasion like over the Holidays or on Birthdays. I no longer visit with them or even with my own family. I only am able to have my sister visit as I was honest and open with her from the start and she has shown interest, kindness and compassion unlike other members of my family.

    It's caused a lot of problems in my relationship with my DH and I regret not being honest and brave enough much sooner with him about how much I struggled with this and other problems socially and not being brave enough to explain things to my family (however they do not want to "get it" anyway - too inconvenient for them..LOL)

    I have also become a virtual recluse - I am able to go out alone and do things with my DH and maybe go out for a coffee with my sister and have her here but apart from a couple of email and phone friends who are also ill, I have no other contact with other people on any normal level.

    It's very hard and I believe if I had approached things differently earlier, I may not have lost my family and friends.

    Please speak to your partner honestly about this and find some info either on this site or on other sites that you can print off info for him and other members of the family.

    I hope you and your partner can work a way around this - it's not easy on our partners but he will accomodate your difficulties if he knows what you are struggling with hopefully. I wish you good luck with the rest of your family - they are a different matter (wry smile)


    Bunchy x

    LEFTYGG Member

    I was a big talker owned a hair salon talked all day now i avoid calls from my 1 good friend cause they last hrs. i like to be alone. I was taught when you dont feel good go lay down till you feel better. ive been laying around for over 5 yrs now i am better and im gonna try to do some thngs so i have a life .love gail
  7. shaz73

    shaz73 New Member

    for you replies, experiences and suggestions guys. Its very comforting to know that I am not alone in this.

  8. Wireless

    Wireless New Member

    Same frustration here. Brain fog here but also migraines/headaches making it difficult to process or deal with sounds and movement and lights and stimuli in general. And weakness/fatigue can even make me not have energy to physically move my mouth and make facial expressions and gestures that are normal. Oh, and during the blocks of minutes/hours that I am fatigued, it is like a depression state where things are not fun and seem negative. Very frustrating.
    [This Message was Edited on 05/31/2010]