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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

55 Replies

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  • lyn29413
    lyn29413 scooper

    Posted

    i have just, after months been diagnosed with chronic fatigue syndrome, in one way im pleased i have an answer to the problems ive had but at the same time frightened of the way i feel. its causing depression because im not me anymore,cant do activities i enjoy,walking ,even darts!cant do normal housework without feeling sick and drained,cant socialise.i feel that no body is understanding to this.i dont even know the reason it started,just out of blue.im now on steroids and anti depressants to see if i can get a boost,i want to be the "normal" me again,im 55 and feel 95! so glad there are people out there that understand and are facing this aswell
    • alison44235
      alison44235 lyn29413

      Posted

      It took 8 years for me to be diagnosed my doctor just did not understand. This was 30 years ago when I think it started after a virus. I was diagnosed 22 years ago. I too find the hardest thing to deal with is that people just do not undertand, they don't even try. I get desparate at times. It really gets me down, but I just have to keep going. It is so very hard. I also find when it is really bad the awfull pressure i feel on my head as if someone is pressing down on it if you see what I mean. I rest every afternoon if I can and go to bed early. It too frightens me. All the best. If you can get anybody to understand please let me know how you manage it.

      Alison

    • jackie00198
      jackie00198 lyn29413

      Posted

      Lyn: I think I know how you feel. This illness can be very scary. Getting a diagnosis is a very important step in the right direction. Many people wait years, not months, to get such a diagnosis. When I first got diagnosed, many years ago, I felt very depressed and anxious. These feelings are understandable, given that I couldn't do all the activities that had previously made up my life. I had to leave work on disability, and couldn't keep up with friends. Are you seeing a CFS/ME specialist? I've never heard of steroids being prescribed for this illness, but of course each situation is different. Steroids, I believe, can be very hard on the system, at least if they are used for more than a short while. Get plenty of rest, pace yourself, eat a nutritious diet. We're all in the same boat here. You've not alone.
    • lyn29413
      lyn29413 jackie00198

      Posted

      hi Jackie00198

      i think the idea of short term steriods is to see if they give me a "boost" and the anti depressants also,i dont want to be stuck on either for long. the last 4 days ive not managed to eat either,think may be medication,just constantly thirsty though, i dont know what the cause of this was,nothing stands out,but been "under the weather" about 12 months now. just so pleased there are people out there to talk to. i believe the next step is to see CFS/ME specialist as it was mentioned at my last doctors appointment.hopefully not too long to wait.thank you ,really do appreicate someone there.

  • lyn29413
    lyn29413 scooper

    Posted

    even today trying to explain to people now i have been diagnosed,they really are not able to understand or just dont want to.!
    • alison44235
      alison44235 lyn29413

      Posted

      People I find just don't understand, or think. (Well your allright you look allright and you do manage to do things) They don't see how I suffer after doing thnings. They don't know how much I have to rest. They don't know even if i tell them how ill I am after a holiday. They just say with a laugh 'I thought holidays were spposed to make you feel better'

      I could go on.

      Alison

    • scooper
      scooper alison44235

      Posted

      o m g once again this is exactly my experiences, 'have a minute' go and get some fresh air' ...ok so where do i get the energy to actually get up and go get some fresh air, 'having a minute' is going to make no difference whatsoever to the way i feel grrrrrrrrr onandonandonandonandon
  • Hope4better
    Hope4better scooper

    Posted

    Hi.  I just wanted to say a massive "thank you" to everyone who joined in the discussion about partners, friends, family's lack of understanding our condition.  I've only recently joined the forum, but it gave me a massive boost to know there are so many people out there experiencing the exact same difficulties that I experience day-to-day.  Thank you again.  Chin up!  We're all in the same boat!  X
    • scooper
      scooper Hope4better

      Posted

      i think on another positive at the very least now we know we are not 'fakers' or hypochondriacs or lasy or 'its all in our heads' just need everyone else to acknowledge that now smile
    • alison44235
      alison44235 scooper

      Posted

      does anybody ever feel ashamed of how they feel? I find that trying to tell anybody is so difficult and that they think I am making it up for sympathy or something, which of course is not the case.
    • jackie00198
      jackie00198 alison44235

      Posted

      I'm sometimes at a loss for how to handle this with others. It's obvious that something is wrong with me. So, in the interest of promoting awareness of CFS/ME, do I tell them that I have this illness. And having it maybe look like I want sympathy (which I do NOT).  Or do I say nothing, knowing they may be thinking I'm weird or something.
    • scooper
      scooper alison44235

      Posted

      alison i feel exactly the same . ive just had a dreadful 3 wks at work and have utterly burnt out i have a drs note for a week and im dreading sending it in as i feel so guilty sad
  • dawn97
    dawn97 scooper

    Posted

    I understand the guilt feeling when trying to explain what's wrong with us !!  I physically see people's eyes glass over as I'm in the middle of this elaborate explanation of how it feels to live with c.f.s  , I see them give me the once over & I'm in panic mode thinking what are they thinking about me. !?!? If this makes any sence to anyone I will forever be in your debt ???!!!!!!!!  It puts me in a panc wanting so desperately to prove myself when in reality I should be saving my energy for more important things !!  I truly believe because we are the kind of people that wouldn't miss a days work or shy away from hard work in our past lives that we feel as if we have to prove why we can't work because deep down we feel ashamed we are at home watching day time t.v ( something I used to think was unexceptable & I would rather die than do !!! )  it breaks my heart to read the amount of people who close family don't understand ! They should be the ones that are there for us !?!? My own sister used to say things like how I wish I could afford to stay home ! I used to cry after listening to her , then she would really (deliberately I believe ) stumble over saying c.f.s & she couldn't say fibromyalgia for the life of her until latly now she tells me she has fibro ( I'm sorry but I'm not sure it's true because of the way she acts !?)  she rings me every day to tell me how ill she is ,  talking in this really sad sorry voice ! ( am I being cruel ??) & never once has she said now I understand how you feel sis !!( that would prove to me she did have this !!!). I by the way have never said to her arnt you lucky to be able to stay home !!! I've been the one helping her with form filling   & even taken her to dr appointments !! It's just as if now it's real because she has it !

    there I go again on my soap box !! I've turned into this grumpy old woman & I used to be so much fun to be around !!!  Take care everyone x

    • alison44235
      alison44235 dawn97

      Posted

      I agree with all the above. My sister used to say do you just go to bed on an afternoon as a matter of course. Is it just to get away from people. She died of lung cancer 4 years ago, I went to see her every week and took over from the family so they could have a rest. It was a 100 mile trip every time. It was something I had to and wanted to do, but I was really ill afterward for at least 7 months.

      I wish there was an answer to this M.E. It is really really getting me down. A friend has said to me recently 'well none of us are getting any younger'. I have had it for 30 years.

    • jackie00198
      jackie00198 alison44235

      Posted

      I know what you mean. I, too, have had CFS/ME for several years. On one hand, I want to keep up hope that something can happen to improve my condition. On the other hand, I think acceptance is important, so that I can live the life I have right now as best I can. It's a difficult balancing act. 
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