Sick of this illness:-(

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Hi there I'm new to this but I need to talk to people who know exactly how this feels.

I've had cfs for 6 years now n it just keeps getting worse and worse. I'm in a really negative place with it right now. I really just need to talk about it. Ive never felt as low as this. Just don't seem able to pick myself up just now. I just feel like there's nothing to look forward to.

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  • Posted

    Really sorry your feeling so low, and yes most of us experience it, l,d a very bad day a couple of days back, but picked up a bit now. l dont know your personal circumstances, age, relationships, l,m older and on my own, which doesnt help with phycalogical either, due to restrictions, loneliness, boredom frustration, and l at times lose dreams and hopes, but so far manage to get some back to carry on with.  If your young there is time for a cure to be found that can give you a better future, untill that time, which could be sooner than we all think, do you take anti depressants, they can help. Is there anything you can treat yourself with, that can help, be it a taxi outing, massage, something for yourself or home. Weve got through the worst of winter and spring near very soon, brighter days at least. Just try to hold on to your hopes and dreams,  there  are those on here, who might reply, whove been bedbound but have improved enough to be up and about a bit more, so it can change for the better.  Hope you can lift your spirits best wishes
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  • Posted

    Hi there . So sorry to hear your in a bad place just now . I know exactly how you feel . I'm in quite a bad place myself at the min . I'm nearly nine years now . I was able to work for first 5 years . Thought I could work through it .. big mistake! ! I'm a mess now . I've had it that long nobody really cares anymore . I just can't believe people still believe it's all in the head . I do believe that will change tho !! . I don't remember my old self or what I liked to do I got it after having glandular fever. I've always tried to keep house clean and look after my husband and kids . I feel now that they all expect to much of me now ! My whole body shakes terribly and it is so embarrassing. I really need to Learn I can't do everything on my own . I guess my husband didn't mean in sickness and in health when we got married !! Sick of the blank looks you get when you talk about ME..I give up .. sorry if that's not much help ...but just remember your not alone there's people out there just like you . It's sad that there's not much support out there. That is a big help if you have good support from family and friends . I hope things pick up for you .one thing I wish I had been told at the start was how important pacing was . If you can do that it helps. Hang in there . If there's someone you can talk to then lean on them ... it dose help to talk about it . 💛x
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  • Posted

    Hi Lis, it's great that you're talking about it!

    I've had it for over 10 years and sometimes it's very difficult to cope emotionally. I'm on my own and virtually bed bound so I can't keep my home clean and tidy since my care stopped (cut backs bless em!).

    I have a friend who has Fibromalgia and we email every day; this really helps us both. We can have a good winge or tell each other about good days etc. Perhaps you could hook up with someone with a similar illness to email with or even phone.

    I use St John's Wort and Damiana herbs and they help a lot! Also light therapy boxes are very good for lifting the mood and giving energy.

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  • Posted

    Hi there Thanks so much for taking your time and effort to write to me.

    You all made me feel so much better.

    I'm really blessed to have a great supportive husband but that makes me feel so bad for feeling so low because I know I'm lucky.

    I feel like I'm a total pain. I want to do all the things we used to and just can't. I was such an exercise nut and absolutely loved it.

    I Was always immaculate and took such pride in myself.

    But now I struggle to wash and hardly ever dress properly. My hair is never brushed and I've gained about 3 stone over the 6 years.

    Just want to have fun with the kids but I'm always sleeping or if I am awake, I'm too shattered to join in.

    I try so hard to eat and drink really healthy but just at the point now where I'm just sick of feeling shattered, sore, so forgetful, talk a load of rubbish and just want to feel normal.

    I'm not seeing any improvements even though I try all the right things, well i say right things but no-one actually seems to know whats right.I'm getting worse and really struggling to be positive.

    My family are great so I know I'm so lucky but I can't seem to handle this illness.

    I feel like I'm going mad.

    My cfs was triggered 6 years ago after taking pneumonia 3 times in the 1 year.

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    • Posted

      I know what you mean about feeling bad about feeling low. You see all these programmes about children battling cancer and all sorts of great bravery in the face of terrible illnesses, but I expect those people get their sad days too!

      In a way we're grieving and going through the stages of grief just as if someone we loved had died because we've lost the old us, the running around, energetic, lively, fun loving people we were.

      We're different now but not worse, we're stronger, more resilient (we have to be to get through the days), and though acceptance is part of the grieving process it doesn't mean we have to lose hope of recovery, just accept having this illness for now. I think I'm getting that a bit now after driving myself insane wishing to be well all the time!

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    • Posted

      l read your response, and it could be about me, and others l guess, we all feel simular about ourselves, varying degrees at different times, yes even appearance, she says thinking about the haystack on top of my head, and often feel a slob, to give myself a bit of a kick now and again. but also feel a pain about myself often, lve fallen asleep 2 or 3 3 times sat upright today, woke up later feeling like ....but  your thoughts are not unusual. l,m on my own, thats a drag in having no one to help with practicals or give emotional support or just company, but swings and roundabouts, l dont have to feel guilty about what l do or dont, how l look for family, my household stuff is minimul re only my mess to clean, only self to wash for, so in that way its easier. Maybe your guilt at not being the wife and mum you want to be, or think your expected to be is draining the little energy you have. Your kids need and love you, for them just having a chat and a cuddle is better than you not there for them, they can still enjoy  being  active without you.

      Try not to dwell on feeling guilty, not easy, but its wasted energy, but does your doctor help at all, do you tell him your feeling worse, and l know how drs can be, been there.  Pneumonia is very drastic with after affects. l dont think your going mad, l feel same at times for me, its just how it all affects.  Hope you have a decentish night and wake feeling a bit better, best wishes. 

       

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  • Posted

    Hi

    Firstly you need to stop beating yourself up. You have  a chronic illness which has changed your life. It's ok to feel down and its ok not to be able to do everything like you use to. It's ok to rely on your husband and its ok to put your energies into things you would have taken for granted. It's ok to be kind to yourself and be proud of all you achieve however small. So start tomorrow by listing what you are proud of about yourself and saying nothing is not an option! If you still don't know ... ask your husband as it sounds like he is the support you need...along with us every so often. Remember you are an important person in his life and I have no doubt in the lives of others. And finally I will start your list off: You are a fighter with amazing determination and courage, to have gone through what you have and get through each day with the difficulties you have. 

    Take care

    Paz

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  • Posted

    I know exactly how you feel. It is terrrible. I feel as if I just can't go on and nobody un derstan ds except people on this forum, it is sucha job to keep going, All I want to do is stay in bed, but know I can't as I have too much to do. I spend he afternoon in bed though and go to bed early the only way I can cope with this horrible illness.
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  • Posted

    Hi Lis, like you I am in a bad place pretty well all the time. My problem is I am 79 yrs old in July so why am I still trying to fight this thing. You can imagine where my thoughts are which grow every day. The people on this forum are like you and me looking for an answer, but does it exist. Wish I could give you some advise that would lift you but it would be false and an insult.
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    • Posted

      Hi Retriever, I really feel for you and I've been where you are with losing hope; I've even been suicidal.

      I don't get like that now because I've made improvements in some of my symptoms with diet and herbs, and although I'm not sure that I'll ever get back to being as healthy as I was before ME I'm happy with things getting somewhat better. I know 2 men around your age who recovered from ME through diet.

      I think we should always keep trying and having hope. razz

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    • Posted

      I just want to add that there's a really good book about 50 people's recovery from ME stories, and they tell us how they did it.
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    • Posted

      It might be a good idea for me to introduce you to George. He's a member here and he's given me so much hope and encouragement.

      From what he told me his diet was very restricted by his wife and included easily digestible and healthy foods like brocoli, no meat, no processed foods etc. I can't remember exactly all of the foods he told me he ate.

      I'll ask him if it's ok for you to message him, or hopefully he'll message you. The other guy isn't in this website, I met him in a CFS forum.

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    • Posted

      Hi GeorgiaS,

      Seems about this time I seem to go down 17.20. Havn,t done anything today. Just had to write something. I have recieved diet from George. Looks managable.

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