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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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  • dawn97
    dawn97 scooper

    Posted

    Hi Alison o.m.g  my mother in law used to say to me you will know real pain when you get OLD !! At the time she had a little arthritis in her neck & didn't take any medication ! Now however  she's in agony & said to me the other day  people don't understand what it's like to be in constant pain !?! They think you can carry on as normal !?  I  couldn't believe my ears !! I said. I think I understand ! After 14 yrs I think I'm  pains my specialist subject !!!  Sarcasum fell on deaf ears I'm afraid !! But isn't it amazing  now my family are getting ill  it's understood but I've never once been told by them  it must have been hard for me all these years !! Acknowledgement is all I crave for. But I don't think I'm going to get it. !!  Take care x
  • lyn29413
    lyn29413 scooper

    Posted

    i dont know what im doing wrong here but for the last 8 days have been in absolute agony,every movement ,arms legs is pure agony.ive tried changing my diet to include more protein ,my appetiete is zero also,my baggy bits have got even baggier and havent got the energy to exercise to try and tone them.when i first get up in the morning for at least the first 3 hours i am struggling to make coffee,wash ,dress and in general get around in doors. the motivation is there but my body doesnt want to comply. my sleep pattern is disrupted constantly as moving in bed is agony so i wake to move, please some advice,what am i doing wrong? even household chores are taking 3 times longer and im trying to rest during these.
    • jackie00198
      jackie00198 lyn29413

      Posted

      You're not doing anything wrong! And talking about baggy bits...a few weeks ago I started noticing I'm getting baggy bits where I used to have smooth skin and muscle. And I'm getting "old lady" skin. I used to go to the gym regularly and had great muscle tone. I can't exercise because I get ill and relapse. Even the smallest effort makes me ill. I can't believe you're even doing household chores. Can you see a CFS/ME specialist to get something for the pain? 
    • lyn29413
      lyn29413 jackie00198

      Posted

      my doctor has given me pain killers but also put me on anti depressants,"to lift my mood" of course i feel down ..because i cant do what i want to do, but i dont like takeing either of these,ive always been anti medication. even my poor pooch has noticed the difference,she only gets short walks now ,if at all some days.
  • lyn29413
    lyn29413 scooper

    Posted

    my doctor has given me pain killers but also put me on anti depressants,"to lift my mood" of course i feel down ..because i cant do what i want to do, but i dont like takeing either of these,ive always been anti medication. even my poor pooch has noticed the difference,she only gets short walks now ,if at all some days. 
    • alison44235
      alison44235 lyn29413

      Posted

      I wish we did not have to scroll down (which is exhausting) and have to wait to see what we have written.

      Anyway. I nearly collapsed today in town. Felt terrible. My dauther is staining with the two grandchildren and 3 dogs and it is just finishing me off. Nobody understands just nobody I hope none of my frineds or famly get this awfull illness. But if they did they might then understand. They will want symppathy won't they!!!

      Please who ever is in charge of this website do something with the above, my first sentence, thankyou.

      Alison

    • jackie00198
      jackie00198 alison44235

      Posted

      I think it's important that you define your own boundaries. I know this can be difficult, espedially with family. Whether people understand or not, that's their problem. Ultimately, you have to decide not to push yourself and risk feeling worse, or relapsing. Again, I know this is hard, from first-hand experience. When my husband tells me it would do me good to go out, I grit my teeth, get annoyed at him for not understanding that I don't have the energy to go out--and I stay in, if that is what's best for me at the time. I think I remember that you've had this illness for quite a few years, as have I. We both need long-term coping strategies. I'm so sorry you're feeling so ill and nearly collapsed. That's really awful.
  • erika02301
    erika02301 scooper

    Posted

    I truly hear what you are saying! I'm 54 and have been diagnosed with CFS 4 years ago. My family does not understand my Illness or for some of them they don't want to understand. They think I am just very tired. I have terrible eye pain at night, for a few months now and that is just one of the symptoms that CFS brings.

    It is a horrible Ilness and it is real! No matter who doesn't want to get informed/ understand, know that there are people that care about you and who feel the same way you do!

    all my best to you smile

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