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Visitors - Exhausting Aren't They?

Discussion in 'Lifestyle Management' started by Machair, Nov 24, 2010.

  1. Machair

    Machair

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    Chelmsford, England
    I was wondering if anyone moderately affected like myself finds being sociable with those outside the family totally exhausting.

    I have several friends who say they understand CFS/ME but have no real insight into the condition. I try to only see people very infrequently in this group as it involves housework, making coffee etc, which is too exhausting relative to the enjoyment of the visit.

    I have managed to get enough window of energy over the last fifteen years to work very part time from home, and to put all my remaining energy into my family and husband and pets, but those other than very close friends are really not possible to keep up with even by phone. Is this how you all feel?

    Some of this arises from the fact that some people are just too hard to talk to - even my father who still thinks the disease is due to too much stress, and if I am unwell wants to know why the doctor can't fix it. Some friends are sympathy givers, but it isn't what you necessarily need - more acceptance and respect and an understanding that it is a long term condition.

    I am learning to say no and not yes, when in the past I would use energy to see people in case I offended them by turning down invitations. This has resulted in better control of the disease through pacing, but a much smaller circle of friends. Anyone else in this boat?

    I seem to have started to really enjoy solitude, which is different to loneliness as I find it restful to be just in the company of myself, or my husband or dog, rather than trying to keep up commitments to social activities involving travel, telephones or housework to prepare for them.
     
  2. justy

    justy Senior Member

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    Hi Machair, yes i feel like this too. I am moderately affected (although having bad crash at the moment) am at about 40% on the scale. I do love to see people and i do get very lonely at times. But mostly i find socialising very tiring. I went to a good friends house last night for birthday cake - just for about an hour and a half. It was the first time i had gone out in the evening for about a year. I quickly remembered why it is so hard. i spent 15 mins standing up talking animatedly to someone (who does not know i have M.E) then i needed to sit down, but head had already started hurting. I had a nice time but it was very tiring. I also had birthday cake with wheat, sugar and dairy - all no nos for me. I had a lovely time, but was it worth it? sometimes i think so, but at others not. Also most people do not seem to understand that socialising is difficult in itself. Family members are not too bad, but even some of them dont understand.

    Often i get the old adrenaline push which seems to get me going enough for a while, so that i actually start to feel less tired as i am doing the activity, this always leads me to getting back into the old "its all im my head" crap, so i push on further and think this is great, i am o.k, why was i being such a wuss about all this. Later on, when i have terrible eye pain or muscle aches or cant speak, i remember that i am ill and i cant do those things.

    I dont understand why i feel ok when i am doing somthing and then bam. back to bed for a week! (thats me now)
    on the other hand, like you i really appreciate my time with my husband, my kids etc and just being at home and watching the fire flickering quitely.
    my husband finds this hard though as he is a real go get em active person who hates being tied down.
    I suppose we all have our crosses to bear.
    I dont tavel at all anymore, whcih i miss, but also i just want to feel safe and secure until i feel a bit bettera nd more able to cope with the world.
    I am curretly really only able to sustain my family relationships -and as i have 4 kids this in itself is quite complex- and 1 very close friend.
     
  3. Sasha

    Sasha Fine, thank you

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    Totally in the same boat - had another viral bug a month ago and have had to go back to basics and stay on my tod in my flat and get people to come & visit me. I think I need to tell them I need to limit their visits to an hour and set a timer! I only have a small circle of good friends that I meet with and I know they'll understand and will find it helpful to be told a limit.

    It is physically tiring to be with people - it's just another thing we have to take into account when pacing. I avoid frequent phone conversations with friends who live out of town these days but again, they understand and with long-established friends it's easy to get back onto the old footing if things change for the better.
     
  4. L'engle

    L'engle moderate ME

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    Yes. Just keeping up with appropriate social cues, body language and voice modulation is exhausting. Visiting with someone when I seem emotionally flat and uninterested, because I am harbouring my energy, seems more damaging to relationships than not seeing people at all. And physically being with people is exhausting. I may be able to go for a walk on my own, but talking while walking leaves me gasping for breath. Good things we have our friends on here!
     
  5. Nickcnate

    Nickcnate

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    I can definately relate!
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I relate with this, as most perhaps?

    "Some of this arises from the fact that some people are just too hard to talk to - even my father who still thinks the disease is due to too much stress, and if I am unwell wants to know why the doctor can't fix it. Some friends are sympathy givers, but it isn't what you necessarily need - more acceptance and respect and an understanding that it is a long term condition."

    Yeah, I would rather get emapthy and understanding. I relate to the father thing, I am not close with him, and don't waste my precious energy. He is hard of hearing and English is not his first language, so major difficulties in that regard also!

    "I am learning to say no and not yes, when in the past I would use energy to see people in case I offended them by turning down invitations. This has resulted in better control of the disease through pacing, but a much smaller circle of friends. Anyone else in this boat?

    I seem to have started to really enjoy solitude, which is different to loneliness as I find it restful to be just in the company of myself, or my husband or dog, rather than trying to keep up commitments to social activities involving travel, telephones or housework to prepare for them. "

    Eventually we need to do what is best for us, when we finally learn this or realize it, never mind what the rest of the world think of us!

    Sounds like you have a good handle on your illness now and will hopefully not decline due to the ME/CFS!
     
  7. Misfit Toy

    Misfit Toy Senior Member

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    Visitors or visiting. This is why I am spending my Turkey day alone. I work and deal with people and decisions. I have no energy left over for talking or people who talk too much. When I am really beat, everyone talks too much. SILENCE. I am thinking a deaf person might be good for me...

    I am with you GG. I don't mind the solitude. It is
    what heals me unlike people and I was like that even before I got sick so now it's double.
     
  8. alex3619

    alex3619 Senior Member

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    Hi L'engle, I couldn't agree with you more. In two days a long term friend of mine is having his 40th birthday dinner at a restaurant, and I will be going. There will be so many people there that I expect to be totally exhausted on Sunday (and how many more days I wonder?) The good news is that I will be picked up and dropped off to my door, I don't have to face travel as well.

    Bye
    Alex
     
  9. Starlight

    Starlight

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    I'm glad this topic was brought up!

    I am severely affected and I find visitors and phone conversations among the most grueling things I have to do. I'm trying to pace myself now by cutting time spent keeping up with friends and family and such contacts. I've had to tell many people I'm just not able for their visits. This is absolutely alien to me as I had always been very hospitable by nature. Unfortunately it's also alien to the people I have had to refuse. Before my illness people just turned up and were always welcome. Now these same people,especially those who had been closest to me, have no understanding at all and make interactions with them a minefield of careful explanations before they get mortally wounded by me saying "not now". One visit earlier this year left me in bed for a month just trying to live on fast food deliveries to feed me and my daughter until I was well enough to get up. Many of those closest who do call never ask how I am at all. I think they've all be trained in the weasley school of treating this illness!

    Any suggestions how I might handle these people so as to avoid the annual Christmas crash caused by these visits?

    Everyone says they'll only stay 5 minutes but never mean it.

    Glad to know that other people find it exhausting too and that it's not only me.
     
  10. hope love light

    hope love light

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    East Coast, US
    Turkey Day Alone

    Hi All,

    I am new to this forum and thankful to have found you all. I am spending turkey day alone in bed with the laptop and I'm kind of enjoying it. We were suppose to have dinner here and I started on a bad downward spiral on Sunday, which was prob due to the stress of the idea of having people over.

    As luck would have it our stove went out last night and we had to cancel. So I sent my wonderful husband with all the food over to his moms to have Thanksgiving.... he even took the dog :)

    So I am here with peace and quiet (on my birthday). Yes I would prefer to be well and have Thanksging but since that is not the case I am content with taking a nap and not having the exhaustion of trying to follow along with all the conversation and chatter.

    I guess after 20 years I am learning to pace myself and enjoy the solitude.

    Happy Turkey Day to all my new friends on the forum.
    :In bed:
     
  11. camas

    camas Senior Member

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    Happy Birthday :balloons: and Thanksgiving, hope love light. Welcome to the forum!
     
  12. L'engle

    L'engle moderate ME

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    Hi Alex, good luck with your trip out to the restaurant. One thing I always do if I end up out in a restaurant is to sit with my back to a wall, preferably in a corner seat, so that I'm not facing a stimulus barrage from all directions. The last time I tried sitting in a chair that backed into the room I was really bothered(disoriented, confused) by the voices and movement going on outside my peripheral vision. Hopefully you can sit by someone who has a quiet voice and doesn't talk too much!
     
  13. Misfit Toy

    Misfit Toy Senior Member

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    Hope Love and Light Happy Birthday! I am here alone on this fabulous Turkey Day and it's been nice. I think what makes it so nice is that I was able to cook a turkey, I stuffed it, make pumpkin muffins, had yams, green beans the whole she bang! etc. After I put the turkey in the oven, I went to bed..I woke up several hours later and it was done. I am listening to George Winston and Sting and the candles are lit and my place is warm. I am thinking of going to sleep again. As much as I would love to be among the living, I am tired and have this illness. So, I am making the most of it albeit alone but it's not the worst. Sleeping and rest to me is like someone elses "good time." I love sleeping. So....so be it.
     

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