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Losing hope

Posted , 9 users are following.

Tutu123
Tutu123

Hi

I have suffered with cfs for about 12 years now. I have managed to hold down a full time job (just). And I feel if I gave it up my symptoms would get worse and my body would just "give up". I've watched others where this was the case and their illness became their life and their only focus. I'm scared this would happen to me and I'm quite ambitious I love my job.

Is the anything anyone has tried that made any kind of difference to the fatigue? I recognise that certain foods worsen my symptoms (such as gluten) but having a healthier diet alone hasn't made much difference at all in terms of improving my symptoms.

Tried all the cbt and psychological treatments and this only made things worse.

I'm losing hope that I will ever get my life back. Any help of advice would be much appreciated

Thanks in advance .

0 likes, 23 replies

23 Replies

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  • Beverley_01
    Beverley_01 Tutu123

    Edited

    Hi,

    I wonder if part of your feeling is due to going back after Christmas?

    I admire that you are able to work and feel this keeps you going. if you look on line this means you have mild cfs/me ( I know, the terminology is ridiculous !) Others on here like wknight, say they way they got better was to do things slowly to build up to working.

    I can't work and I'm 6 years in. My physio told me that I am doing too much already to even start to get better I need to cut back on activity. I take feroglobin which I think helps, no gluten/dairy. organic veg and have to rest alot but , I am in the moderate to severe catagory. I don't think I have given up though but yes my symptoms dictate my day at present but I struggle walking which I am guessing you are ok with.

    Don't give up hope.

    beverley

    • Tutu123
      Tutu123 Beverley_01

      Posted

      Thanks for your views and advice Beverly. Sorry if my original post came across the wrong way I didn't mean that anyone who wasn't able to work had given up, it's just a personal thing for me and the way I feel about it all. At the weekend I hardly ever make plans. Last weekend I was barely able to get out of bed. My body just crashes. Yes it is weird how they categorise the severity of the illness I would say I am moderate. I push through a lot of very severe symptoms where a lot of people I imagine wouldn't do this. Mild isn't a word I would personally use to describe how I feel. In pain every day so much so that I sometimes can't sleep, I can't stand for more than 5 to 10 minutes tops or I feel exhausted. I'm lucky I have a desk job really. My head just feels constantly heavy and the exhaustion is overwhelming. I find although working may be making my condition worse, it is also a distraction and stops me dwelling as much so its a double edged sword for me. I'm sorry to hear about how you suffer with it all that must be difficult for you x I too avoid gluten dairy and a few other food groups whilst taking additional supplements. I find it doesn't improve symptoms but stops them becoming worse

    • Beverley_01
      Beverley_01 Tutu123

      Edited

      Hi,

      It didn't read like that, I felt you seemed more angry at the condition and it's prospect of you "giving up". I think it's a tough one and an individual choice at the end of the day but, resting and pacing is a definite! I myself would probably say-go part time for the short term and build back up perhaps. Do your suppliments have iron and vitamin d? I take feroglobin which does and my pain has definitely changed, not gone away but, maybe the intensity is different?

      I like you spend most of my weekends recovering and resting and trying to be ok for Monday. I have children and my youngest is in GCSE year and the tension is high.

      I really do admire anyone who works as well with this. My sister worked in a school where one of the teachers had cfs/me and she used to use a trolley with wheels to get around. I cannot even imagine trying to deal with a room of 30 all day with this condition! never mind the lesson planning.

      I guess part time is something for you to think about with the possibility of building back up to the level you are now or to see your GP and have some sick leave and build back up with a phased return?

      Yes, the terminology of mild, moderate or severe is totally un-befitting of the condition!

      Beverley

  • antand23
    antand23 Tutu123

    Posted

    I have only been suffering for about six years . Two and a half years ago I went part-time which gave me more space for resting and pacing....though that took time to accept (breaking the habit of a lifetime!). All I can advise is giving yourself time to rest - ideally small periods within the day, if you can - even if it's just shutting your eyes for 10 minutes.

    Good luck!

    • Tutu123
      Tutu123 antand23

      Posted

      Thank you for the advice I will try and do this more throughout the day and maybe consider doing a part time role x

  • caroline_74621
    caroline_74621 Tutu123

    Posted

    Hey,

    I went through this feeling last week. I felt it was the grief process all over again and so frustrating.

    I've had to cut my hours down to 2 days a week and not given any responsibilities. I find that so tough as ive a been manager, deputy and set up businesses.

    On the days i dont work i set a plan of things to do but will rest between each activity.

    Everything i try is trial amd error until i fimd something that fits around life.

    We all know how hopeless and frustrating this illness can be but maybe its time to reevealuate trying something new that will be more beneficial to you.

    Dont look at it as an end but trying something new.

    Hope you are well today.x

    • Tutu123
      Tutu123 caroline_74621

      Posted

      Thank you for your kind words Caroline, it's made me a feel a bit more positive. Sorry to hear about your situation too. Ive been overlooked for a promotion today despite performing really well in my role at the expense of my health and that has been another nail in the coffin really. I guess I'm just not sure where to go from here and that's really difficult for me. Thanks again for listening and taking the time to reply. X

    • Beverley_01
      Beverley_01 caroline_74621

      Posted

      Hi Caroline,

      I was self employed, loved my job and had just got two new contracts when cfs/me came a calling. It is a non discriminatory condition and whether you end up with mild,moderate or severe is random also.

      I struggled for quite a while having to accept my limitations and admire anyone who can work with this! I met a woman who had it for 2 years and managed to work and recover so there is hope out there. Also, one of the physio team here had it and the way they recovered was to have a staged return and then work part time. My friends partner had it for 10 years and now has his own business and is able to complete huge bike rides-and that is from bedbound.

      I find it a fascinating condition as well as a truly frustrating one. My original doctor said to me to be prepared for changes in my life and look at what the universe was giving me (very spiritual for a doctor ) this was just with the fractured spine as I didn't know for another 18 months that I had cfs/me.

      Hopefully you will be able to gradually regain your energy from the resting and pacing you do outside of work.

      Beverley

    • Tutu123
      Tutu123 Beverley_01

      Posted

      Wow some of those stories do sound hopeful. Do you know what it was that those people did or what changed for them to recover? Exercise is something I really miss. Even gentle yoga I find draining.

    • Beverley_01
      Beverley_01 Tutu123

      Posted

      it was resting and pacing and family support for the physio and my friends partner as far as I know.

      I miss long walks and swimming and yoga! I find it hard to do anything major but, have sent for a yoga mat and hope to try the core strength exercise my physio gave me. it's not a very big exercise and she said just do a couple of times a day but, if I can manage a couple of times a week it might help.

      Beverley

  • adam_d
    adam_d Tutu123

    Posted

    Hi caz ..I've been suffering from this illness now for a year...

    I Could only work two days a week..

    it's very frustrating..as you can't plan anything as you are dictated by your energy levels..

    I feel for you ..and as a member has said ..you do have a grieving process when you get a flair up...

    we can only get on with it..and try things that can make us relax and take our minds of it..

    things that helped me ...is prayer , acupunture ,Chinese herbs..

    coffee ...rest and good sleep at least 9 hrs

    qhi cong

    and it helps..

    the acupunture is the best thing though..it opens up the channels in your body so your body after a certain time will go back to its alignment..but this can take 1 to 2 years not just a few sessions...also you need to see a older experienced Chinese master who is a master in this treatment..

    it is curable..

    I think I am 35 percent better since 4 months on acupunture...

    have hope..because negative thinking..just makes this a lot worser..

    have faith that God will cure you.

    I believe that as we have problems in our life ..our bodies go in limp mode as in cars..when something is not right..in my case ..I had a stomach operation last year and brought my energy channels to go wrong.

    everyone has something which is straining the immune system or lymphatic system or so many other things that could be straining the body ..

    I wish all the best and God bless you all..

    • Beverley_01
      Beverley_01 adam_d

      Posted

      Hi Adam,

      Is yours as a direct result of the operation? Just curious about the "ways in" to cfs/me as mine was a car crash.

      Beverley

    • adam_d
      adam_d Beverley_01

      Posted

      Hi Bev

      yeah I think so..but my body was weak before that...with stomach problems..and this operation just exposed the illness then..

      but I'm on the mend now slowly but surely..

      May you recover and heal soon as well amen

    • Beverley_01
      Beverley_01 adam_d

      Posted

      Thankyou Adam,

      You too. gently does it as they say 😃

      Beverley

    • Tutu123
      Tutu123 adam_d

      Posted

      Thanks Adam for your kind words and advice. I have heard acupuncture can be very effective in our situation (I have a needle phobia so have been putting off trying this for a while) but I'll try and pluck up the courage to give it a go. What Chinese herbs do you take out of curiosity? I do stuff like mediation which I imagine gives the same kind of relaxing and good feeling as you get through praying. I also do agree 9 hours sleep for me as well to make the most out of the little energy I have got. Take care and thanks again

    • adam_d
      adam_d Tutu123

      Posted

      I will get back to about the herbs ..need to check what they called ..a funny name

    • adam_d
      adam_d Tutu123

      Posted

      Hi caz so the herbs are called bu zhong yi qi wan

    • Tutu123
      Tutu123 adam_d

      Posted

      Thank you for this. Do you experience any side effects from it? What sort of quantity do you take?

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