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understanding cfs

Posted , 11 users are following.

scooper
scooper

Advice needed plz ,I am 51 and i was diagnosed with CFS around 2yrs ago after suffering for several yrs directly after 3 bouts of cancer its frustrating, disabling and depressing but the hardest thing to cope with is when people dont understand how desperatly difficult it makes life for you. I cant even get my own mum to understand! i work 30hrs a week and find it so difficult and to conserve my energy, i tend not to talk much but i feel totally alianted from the rest of the office they dont even acknowledge me when im quite visibly on my last legs. How on earth do i get a stubborn 'aged' lady who used to be a nurse and thinks she knows everything to understand that im not just tired and it wont go away if i have a sleep and sometimes im just too tired to talk

5 likes, 55 replies

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  • JulieBadger
    JulieBadger scooper

    Posted

    The Spoon Theory by Christina Miserandino helped me explain it to family. We talk in relation to spoons sometimes. When too tired to talk I just say ' sorry, not feeling too good I'm too tired to talk. When people see me on my mobility scooter or walking with my sticks they understand more cos its visual. Good Luck and be patient with them. Humans understand much more when they can see it so we are doomedlol 
    • scooper
      scooper JulieBadger

      Posted

      Thanks Julie ive tried this but then i just get 'o am i boreing you.. we all get tired'!! and you are so right if you see it its real otherwise it doesnt exist no hope for us ha rolleyes
  • JulieBadger
    JulieBadger scooper

    Posted

    Don't suppose it would go down that well if you reply "you're not boring me, you're just making me want to go off on my own and have some peace"cheesygrin. How about, "you're not boring me, it's just my brain doesn't want to keep up with us today. Sorry, it's having a slow day again. I'll give you a call / come and see you when it decides it wants to behave itself again" ?  
    • scooper
      scooper JulieBadger

      Posted

      haha thankyou for making me smile and your right i dont think that would go down too well i think i might right down what you said and keep it near the phone  'just in case' any ideas how i can get my colleagues to understand that just because im quiet im not in a bad mood as i work in an office of 9 but i feel like im totally on my own sad i 
    • dawn97
      dawn97 scooper

      Posted

      Hi there it's so sad to read how desperate you feel my heart goes out to you. !   I'm sorry but I've no quick fix to get people to understand  , the nature of this spiteful illness is such that  there are no obvious  signs people can see & know how you feel !! You will have to educate them ! Choose your person & get them to read as much info as possible  if you can get one person on your side at work you will feel so much better , there will be non believers & it will hurt when your called lazy or such like but there will be people prepared to help !!! Get your family to read up on c.f.s & if they don't want to acknowledge your illness stay away from them as much as possible you need positive people around you from now on !!!! Good luck !!
    • scooper
      scooper dawn97

      Posted

      Thankyou dawn for your kind words and advice i do have a booklet i was givenand am going to try to get someone to read it as you say to feel that at least onw person believes would make such a difference to my mental wellbeing ...failing that i could get a big sandwich board! i dont have any friends im too tired and when im so tired nobody wants to be my friend but i will take your advice thankyou smile
    • jackie00198
      jackie00198 dawn97

      Posted

      Actually, David, you have a very good idea about educating others. It reminds me of when I had a custer headache episode (I know, what are cluster headaches?). I made several copies of an article about cluster headaches. Then I asked co-workers if they'd like a copy. They were very interested and did read the info. I think they were very curious about these headaches. I really helped me at work.
  • alison44235
    alison44235 scooper

    Posted

    I know exactly how you feel (though I have not had cancer, that must have been terrible). People do not understand at all what it is like to suffer like we do with c.F.S. and I too find that very difficult to cope with especailly the family, my son said to me 15 years ago that i was not aloud to say I was tired, so haven't mentioned it since.

    I have had it for at least 30 years. I was diagnosed in 1992 after going to see my doctor about it for years.

    It gets me down a lot. I just cope with it by resting as much as I can, which sometimes is very difficult, but as you say a good nights sleep does not make any difference. I also find talking the hardest and most tiring thing to do.

    And as you say it is not just being tired it is a lot more than that.

    All the best.

    Regards Alison

    • scooper
      scooper alison44235

      Posted

      Hello Alison im sorry you have suffered for such a long time but omg just like the other ppl it is soooo good to be able to talk with others suffering in the same way soooo good to have understanding as if a weight has lifted 'please dont any of you take it in the wrong way' as im so sorry you all have this annoying frustrating controlling thing but its good to talk as my mental wellbeing is far frombeing well rolleyes
    • jackie00198
      jackie00198 alison44235

      Posted

      Alison: I was interested to hear that talking is hard for you. Same here. It's especially hard for me to talk on the phone. Do you find that to be true? I'm very isolated, especially becaue of this talking issue. I feel like I'm losing my friends.
    • alison44235
      alison44235 jackie00198

      Posted

      I find talking very exhausting and especally on the phone, but I still do it. I keep up with my friends. I keep doing my work in appliqued quilted wall hanging, which takes my mind off how awfull I feel. I have an exhibition coming up in 2 weeks time, but have been too exhuasted to make anything new for it. i am worried that i won't have the energy to set it up. If I had a few hours on my own to do it it would be easier. I won't write any more too tired.
    • jackie00198
      jackie00198 alison44235

      Posted

      Congratulations on your exhibition. I hope you can get some help in setting it up. For those who have the energy, doing something creative is such a positive thing. Lauren Hillenbrand, who sufferes from CFS here in the US, wrote the successful novel "Seabiscuit," which was also made into a movie.  
    • alison44235
      alison44235 jackie00198

      Posted

      Trouble is I don't have the energy. It is something I just have to do. At the moment it is very difficult for me to do my work anyway.

      I will have help setting up the exhibition and it is in the evening as well when am at my worst. I would find it easier on my own then I don't have to talk at the same time!!! I have cancelled the preview.

    • jackie00198
      jackie00198 alison44235

      Posted

      Yeah, the bit about the talking is an added problem. I deal with it all the time.
  • jackie00198
    jackie00198 scooper

    Posted

    I'm so sorry you're going through this, Scooper. I want to give you a little perspective. If you're working 30 hours a week, that's totally amazing from where I sit. Even if it's hard for you. I'm pretty much confined to my house, and I'm so low energy, I really have to limit talk. Talking on the phone is extremely difficult.  This is not to minimize what you're dealing with. Do try to not push yourself. You want to conserve the energy you have, and the level of function you have, and improve. I think the path to recovery involves a lot of rest, good nutrition, good sleep, and freedom from stress, to the extent possible. I'm still trying to figure out how to deal with other people. When I'm out in public, sometimes I don't say anything and let the chips fall where they may. Other times, I think, "I want people to be aware of CFS/ME," so I'll tell them what I have when they see me at low function. This can sometimes result in blank stares, but other times result in people saying, "Yeah, I know someone who has that, and they see Dr.______" So that gives me useful info.
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