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Anyone find it really hard letting friends/family down?

Posted , 9 users are following.

sillysmg
sillysmg

I have suffered with cfs for many years now and I just wanted to know how people cope with telling there friends and family?

I sometimes think that when I tell people I can't meet up because I've not left my bed for the last week! They don't take me seriously saying things like surely you can't be ill much longer it's been 6 weeks! I find this very hard to deal with. I also get you look much better today do you want to go out? If I had the energy I would shout at them but I just don't and wish people after all this time would realise. They think your just depressed and want to stay at home.

This really gets me down and I feel so guilty sometimes I go and see people and then feel awful after.

Please someone tell me they go through the same thing!!

xx

2 likes, 11 replies

11 Replies

  • lisa16216
    lisa16216 sillysmg

    Posted

    Hi, I am exactly the same, my mother and father in law have just treated my husband and I to a week in Italy. Lovely weather, food and sights, but city breaks are a nightmare for someone with ME and I couldn't make them understand. I refused to go out one afternoon, because I was just so tired, I got " we'll have a nice rest and you'll be fine for tonight"! On the way home from the airport last night my mother in law sa a it doesn't matter if I have a day or two feelings tired -it was worth it! She doesn't understand that it will probably be more like 2-3 weeks recovery and being in pain and absolutely exhausted. She actually said she was going to talk to her GP because she doesn't believe nothing could be done ! We just have to keep telling them, and hopefully eventually they will understand, we know how we feel, and we know we aren't putting it on, who would pretend to feel like this for years on end ? 
  • dawn97
    dawn97 sillysmg

    Posted

    Yes I'm exactly the same & I spent years saying yes to invites & then letting people down the last minute. & then spending months feeling guilty !!! My best advise is say no when you know you can't go !!!! Tell your friends to google cfs the true friends will understand & the not so friendly friends will fall by the way side !!

    i read something on a forum this morning 

    making social plans are fantastic untill you have to put your cloths on & go to them !!

    how true is that ?? I wish I had a£ for every time I've got ton ready to go out & have ended up exausted by the time I'm dressed & couldn't make it through the front door !

    learn to say no & stop feeling guilty about it & make the most of the energy you have to make yourself feel good don't waste precious energy explaining your life away !!

    this illness cannot be truly understood unless you have it !!! But the friends that criticse you the most wouldn't last a day with cfs !!! Your the strong one !!

    take care luv dawn xxx

  • dambudzo
    dambudzo sillysmg

    Posted

    hi

    you are not alone

    i also get...well you LOOK ok.

    or....I know that you don't want to talk about it but......

    grrr.

    Anyhow just as you are finding, you go out with people or do things that they want and then it is you that suffers afterwards. they don't see that. they just see the person that you are portraying while you are with them and alas they think that you are therefore fine.

    I have done things like setting my mobile / an alarm to ring at certain times to pretend to remind me to take medications. works a treat for getting off the phone. 

    you are the improtant one here. it is hard to accept especially if you have been in a usually caring role in the past. now roles are reversed. but you have to just say no. and if people are annoyed about it then tough frankly. it is hard but not quite as hard as putting up with the days of recovery which you have to put up with afterwards. 

    i've given up trying to explain. i have found that those who need regular reminding will probably never understand. but those who see you as a person and not an illness will be the true friends and will not be offended if you are unable to see them on a particular day. 

    best wishes

  • JulieBadger
    JulieBadger sillysmg

    Posted

    You certainly aren't the only one. 

    One of the difficult things I find is that sometimes I don't want to be alone and then when others are around, I then want to be alone.  During the week when I'm at home alone during the day I do find it more relaxing, but I do miss people.  Then it's the evening and the weekend, family are at home wanting to do things or making a noise and I just want to be alone again because it's calmer.

    If I keep letting people down on getting together it's probably going to lead to them not asking me again.  Therefore on my better days I am all on my own when I could of been with someone.  I accept the occasional get together and hope that on that day it's going to be one of my good days.  Unfortunately cos I know it's got to be a good day the worry/stress means I end up with a bad day.

    Problem is that even on a good day, I will need my husband to drive. The journey to be under 1.5hrs there and back in total.  The socializing to be for less than 2 hours.  Not easy!!

    A few weeks ago we were supposed to be going to see friends at their house.  We were going to be there for lunchtime (more energy for me than tea time) and stay for only a couple of hours.  I wasn't up to it on the day so couldn't go.  They went still and came back 5 hours later.  I cried on their return cos I'd been so lonely.  They had missed me, were sorry for making me cry and I was sorry I couldn't of been there. Thanks ME/CFS you're certainly mean to us all!!

  • sunshinemb
    sunshinemb sillysmg

    Posted

    Hi

    Been left to get on with it by all family members and friends from before I was ill have long since gone!

    I have got used to the physical isolation that this illness causes me but the 

    lack of emotional support and judgemental attitude from family has been the most

    difficult thing to get my head around!

    I have a fantastic neighbour and she has only ever known me with ME as

    we only met a couple of years ago so she does not know the other me!

    But she has included me in her circle of friends and I try to go out with 

    them every 4-6weeks for a couple of hours!cheesygrin  Even though the after effects

    are bad!  I force myself to do this because I crave that enjoyment and laughter!

    These people have been fantastic and been to see me after my recent

    surgery! 

    I am very lucky to know them!smile

     

  • donna63932
    donna63932 sillysmg

    Posted

    Hi I am so glad to hear am not on my own. When I am somewhere between exhauted and collapsing, and say am feeling ill and tired, the response is usually ... I know how you feel! Really? I wished they did! There would understand how we suffer 
    • lynne69494
      lynne69494 donna63932

      Posted

      Hi seems weve all been there, so not alone, its a big problem, both feeling lonely if on your own a lot, but also difficult to near impossible to make plans in advance and keep them all,  lve diaries with events l never got to,  l felt unreliable and never believed most people understood why and genrally it puts them off, other times you have a reasonable spell and no invites or anywhere to go, some do give up on you,  they  truly  dont understand how activity affects physically and mentally, dss docs can be same, only  my closest re partner and sons believed it due to seeing me on a regular basis, and knowing how desperate l was to lead a normal life, frustrated l couldnt, so  with them l didnt have to make plans so didnt let them down, we just set off made the most of it and  did things spontaneously on the occassions when able, couldnt book holidays, so got a caraven to go on spec, still often with a wing and prayer, sometimes ok on arrival and time there, sometimes not so much, you push yourself, sometimes works, sometimes not.

      lol at Dambudzo, lve used the dog at times for same affect, woof, 

      Like `walk in my shoes`, l think few understand others experiences unless they have same. Worst is when drs dont seem to either.

      But a few understand, lve more empathy now with other people,s health problems of a different type, l dont dismiss there problems, just accept what they tell me now, be it ms, athritus, Good wishes.

      . 

  • JulieBadger
    JulieBadger sillysmg

    Posted

    I sometimes think they should rename it Cronic Exhaustion Syndrome.   When others who don't have CFS /ME try to relate if you discribe it as different levels of exhaustion I think it is slightly easier for them to understand.  How many times do they say "I was fealing really tired, so I just had to sit down for 5 minutes, then I was able to carry on".  However, when they say " I was really exhausted. I wasn't thinking straight anymore. I just had to give up for the night and leave it to the next day".
  • maggie42176
    maggie42176 sillysmg

    Posted

    Hi, Yeah Im exactly the same. I have only found out this year that I have CFS and it feel horrible telling friends and family you cant do stuff. There is hen nights and weddings i just have no energy for. Im making sure i get plenty rest before them. No alcohol and im making myself the driver that night. Also affects my relationship as well. I dont live with my partner, and meeting up during the week can be hard as im exhausted after work and just want to rest. He does understand but it is taking its toll on us as he sometimes think im not making an effort to see him or want to see him. Its not a nice thing to have to deal with

    x

  • dambudzo
    dambudzo sillysmg

    Posted

    you know, reading all of our replies/comments, i realise that we are still making excuses. 

    just think how many people have said 'no i cannot do xyz becasue i am busy'. we don't challenge them/try to make them feel guilty etc. and yet we feel guilty saying no to other people.

    maybe we need to just consider 'feeling yuk' in the same way as 'being busy' and then say, wth confidence - "no i cannot come to visit you this afternoon becasue i am busy / something has just cropped up. i'll call and explain afterwards. meanwhile have a lovely time." 

    maybe easier said than done?

  • jade43146
    jade43146 sillysmg

    Posted

    I go through this aswell ive just been told i have cfs and i rarely see anyone anymore as im always so exhausted that i just havent got the energy to do anything. After taking care of my son and making meals and tidying round thats all i can manage. i feel no one understands how i feel and how hard it is to have this. 
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