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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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  • Flowerlady
    Flowerlady scooper

    Posted

    hello scooper, sorry to hear of your suffering. we all on here know what you are going through. I too am the same, no one understands people just look at me and I can read what they are saying ( what the hell are you on, there is nothing wrong with you) but how wrong they are the pain i suffer is so debillitating for head to foot. And why I wonder do we have such sore feet, do you have this scooper? today, I am in so much pain I have just had three swigs of Oramorph, felt like having the lot to hopefully rid me of all this pain. I must congratulate you on working 30 hours a week, where do you find the energy? wish I could get a job, something to pass the time away to save thinking about pain for a change. Anyway sorry for ranting, off to make a cuppa way too mush rain to go out for a walk today.
    • dawn97
      dawn97 Flowerlady

      Posted

      It is  great to be able to work but I'm sure scoopers thinking its killing her & she's not sure how long she can do it for !!!  I hope scooper manages to carry on but please don't think your giving up if you can't !!! It's just too hard sometimes & people will understand eventionly !!! 

      I opened my hairdressing salon 25 yrs ago yesterday it's still open run by my sister inlaw ! I went to the celebration for 3 hrs yesterday & it almost broke my heart NOT BEING ABLE TO HAIRDRESS ANYMORE !! Friends told me how GOOD I looked ( even though I'm 2 stone heavier !!) & today I'm in agony I hurt all over & my feet are killing me I don't know how I walked from the car !?!? It's so tough trying to manage the illness but when , family , friends struggle with understanding it makes it harder on us. What we need is MORE AWERNESS  get people knowing this is a real illness & not in our heads !!!!! Then we will get a fairer deal & it's long over due !!!!  Hope you all have a better day take care luv dawn x

  • scooper
    scooper

    Posted

    Hello everybody yes talking is a huge issue and guess what i do? i work on switchboard!! within an hr of being at work i feel so dreadfully ill and poorly and cry a lot. I dont have a social life of any kind as im just too tired to talk and i genuinly feel that ppl are fed up with me 'im fed up with me' and every single day i ask myself how much longer can i manage this but i have a mortgage to pay and to be honest i think sometimes if i didnt make myself go to work i would just turn into a blob! i have to say its soooo good to know that there are people that understand but so sad that the only people that do are the ones that have it frown
    • alison44235
      alison44235 scooper

      Posted

      It is so sad that the only people who understand are the ones with M.E. themselves. I could not go out to work and have a social life. We don't go out a lot, but yesterday we went to frends in the evening as my husband is a farmer said he might be combining at lunchtime (he is 75 and I think should not be doing so much) Today I feel so drained and ill. I had to put on a show an effort, what gets me is that my husband does not support me with my M.E. point out to people how I am (I feel people will think i am making it all up). My friend said she had read an article about people who have a gluten free diet, it could be physological, as if!!. I really suffer with my diet apparantly she thinks it is all in the mind (she probably thinks this about M.E. as well) I feel as if we cannot win with this and it gets me down so much, if I had a broken leg, lung problems etc might get some understanding. I feel quite angry about it all today.

      It is good to talk on this forum, lets a bit of frustration out.

  • Deb1982
    Deb1982 scooper

    Posted

    Hi

    I know how the office situation can get you down, I too worked in a busy office before I was diagnosed with M E/CFS and on the days that I could not cope if I asked to go home,my boss would say "you look fine to me" but this is one of the main problems you can feel totally shattered but you look fine and this is why people do not understand the illness.

    I had to give up work in the end when it got to the point that I could not remember my pass word for my computer and forgot a clients name after dealing with them for 3

    years. I just broke down and had to go to the doctors, he first thought I had had a nervous breakdown but after many hospital appointment I was told M E. So please do not let it go too far because getting stressed does not help.

    At the beginning of the year I was taken into hospital

    because I lost the ability to speak and they thought I had a stroke, but in the end they put it down to stress this lasted 3days. So learn to pace your self and if the situation at work does not get better leave your health is more important , it was hard financial but I got good at cutting back.

    I am 54 this year and some days I feel like74 but you will have good days as I'm sure you know that if you have had it for 2 years, to have too cope with cancer as well you must have great iner strength.

    Hope this helps you,on a bad day just write on here and someone will talk to you and you don't feel so alone.

    Debs

    • scooper
      scooper Deb1982

      Posted

      omg debs i have just messaged you a long one and then lost it !! typical  just wanted to say thankyou for making me realise that on my bad days  as in every day at work im not going insane and loosing my marbles or going senlle or worse 'heaving a big sigh of reief' i am already feeling particulary stressed and upset and angry but every day i somhow find the strenght to get through another day it is however getting harder but am having a long hard think about what is more impirtant and do i really need chocolate haha 'needed to add thst so you know i do have a personality its just burried a bit at teh mment' x
    • jackie00198
      jackie00198 scooper

      Posted

      Had to laugh at your "chocolate" comment. One of the hardest things for me was giving up cappuccino and chocolate. Eventually, I ended up in bed the next day after having either.
    • scooper
      scooper jackie00198

      Posted

      jackie i am a big fan of cappuccino i only have 2 a day but omg are they lovely cheesygrin

       

  • Hope4better
    Hope4better scooper

    Posted

    Hi scooper.  I completely understand where you're coming from.  I too am 51 and was diagnosed with M.E. 6 years ago.  I have to work for financial reasons, and have simplified life in every other way possible (ie, down-sizing).  My husband of 30 years still does not understand my condition and what it does to me.  I often push myself too far, and then my husband always has to push me that bit further by inviting people for dinner and then expecting me to be the perfect host.  I always say "I am my own worst enemy" but I am beginning to realise that other people are the problem with this illness.  I think we just need to be really selfish and look after number 1, no matter what that entails! X
    • jackie00198
      jackie00198 Hope4better

      Posted

      Hi, Hope4better: Well, I understand the husband thing. I've had ME/CFS longer than you and am older than you. My husband and I just celebrated our 31st anniversary. He's been so helpful in so many ways, I feel a bit guilty complaining. But there are times when he just doesn't get it, even after all these years. Like he'll say, "I'm going to a music jam. Do you want to go?" Like I could go if only I wanted to. Well, of course I want to go there, or anywhere else, but I'm too ill. What gives? How can you not know this after so many years. Then he'll sometimes say, "I think you can do more than you do." Well, I have to be the judge of that, because I suffer the repercussions of doing too much. And the bar can change from day to day. For instance, last September I went on a trip with him that I had gone on several times before. This time, it caused a relapse that I'm still feeling today. 
    • scooper
      scooper Hope4better

      Posted

      Hello hopeforbetter we sound like very similar people other than im a widow and am sad for you that your husband doesnt understand how it affects you. I still believe the biggest problem is peoples lack of understanding and it is already changeing my personality as i am becoming selfish and have never ever been that way inclined x
  • dawn97
    dawn97 scooper

    Posted

    Hi guys I understand the husband thing too !! Mine has been in some ways amazing yet in others so dam frustrating !! Ie  I suffer terrible from memorie problems but if it wernt for me bills wouldn't  get paid I have to remember everything !

     I've not worked for years but I clean all the house , wash & iron I do the lot !!! Some days I have to decide do I need a shower or does the bathroom need cleaning !?!? & with my husband & 19 yr old son in the house I'm sure you've already gussed it  the bathroom got cleaned & I didn't !!!!!  I just can't do both !!  He says to me come shopping ? I say I'm too tired then he says ohhhhh I prefer to park in the disabled it's easier for me !!!!!!!! Can you believe that !!!  I have to struggle out to make it easier for him !!!  I don't believe anyone can truly understand how you feel but you !!  I've just got up from bed after 2 hrs in agony so it's another sleepless night  !! But I won't forget to call them up in the morning !!!!!  Sorry about the moan !! Night night x

    • jackie00198
      jackie00198 dawn97

      Posted

      Yeah, it's sometimes a mixed bag with these husbands. I can't believe you have the energy to clean the bathroom, shower or no. I have to pay a cleaning person to come in every month or so. My husband does do a lot of cleaning, so again, I feel guilty about complaining. Because I can't clean at all, I have to be satisfied with his standards, which are way different from mine. I guess it's cup half empty/half full. At least he does some of the cleaning, which I do appreciate.
    • scooper
      scooper dawn97

      Posted

      your not moaning dawn your talking to people that really do understand x
  • dawn97
    dawn97 scooper

    Posted

    Well I make sure I've taken my tablets I go for as much as I can ( completely ignoring my pacing !!) then. Take more tablets & pay for it for the rest of the day  but  I have to feel as if I'm doing sone good !! Besides I can't stand mess !!! It makes me ill looking at it ! I'd rather clean & never go out then never clean !!!  

    Thats sad I know & when I think of what I used to get done in a day !! Wish I could do that now !!! 

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