Struggling with work

Can anyone please advise me how they cope working as I am really struggling. I am just newly diagnosed with PBC and although it's great to finally know why I'm so tired all the time , I just don't know how to move forward with a working life.

I left my previous job as I couldn't cope with the fatigue and felt a failure as I looked unreliable and since then I have a job as a support worker but haven't done a lot of goes as I just feel so drained most of the time.

I did think of starting my own business from home as then I could work when I was able but I'm not sure of funding just yet.

Does anyone have any suggestions how they coped as right now I feel like a failure and I want to achieve more for myself but I just don't where to start.


17 Replies

  • Hello Ditz,I also suffer with the fatigue, it is very hard.I have found knowing what the cause is has helped me in that I don't fight the fatigue but it can still be overwhelming sometimes.I also work , I would like to stop working but it's not practical and the future is so uncertain with this disease.But I have switched to a less stressful job and now work part time , usually 2 or 3 days a week. I try to work single days not a run of three when I can and when I get home if I am tired I have a sleep, I did today, not fighting this feeling of fatigue helps me.My family understand and know when I say I can't do any more I can't, but it did take them time to understand.If you can afford it get help with the housework. Be kind to yourself spend your energy on things you enjoy where you can.Please dont feel like a failure only people with this can understand just how hard normal life is for us,everyday I feel like I am walking through treacle everything is a effort and you are doing the best you can in a difficult situation be proud.Good luck Jane.

  • Hi Ditz

    I was diagnosed last July and took quite a while to get used to the Urso. Consequently I had quite a bit of time off work. My employers organised an occupational health assessment and I am currently back in work on a phased return. I previously worked full-time in an often stressful environment. I work Monday, Wednesday and Thursday which allows me time to rest if I am feeling exhausted. I suffer with nausea particularly bad in the mornings so the Occupational health report supports a later start in the mornings. This will be reviewed shortly, so I am uncertain whether this arrangement works for my employers.

    Please don't feel like a failure, this condition can make you feel inadequate. There is a lot to cope with and people don't understand. People struggle to understand partcularly if you look well.. Look after yourself and don't feel guilty for taking time out. If you don't look after you, you can't take care of the people who count on you.

    I do gentle yoga and relaxation with a regular group of lovely people who are uplifting. So when I am not in work probably for the first time in my life I concentrate on things that help with my well-being. I see these things as being equally important as work in my life.

    Working for yourself sounds like a possible options, there may be a self employed business adviser who you could contact for advice about funding. Might be worth a google of people in your local area.

    It sounds like you are achieving loads already, please be kind to yourself.

    Hope things work out for you x

  • You can apply for disability due to fatigue pain and no treatment available for fatigue or pain for PBC, talk to a disability lawyer, the first consultation is free. Let us know

  • I didn't know that - I'll have to keep that in mind for when it gets to be too much

  • A disability lawyer is the one who will take your case and file it and help you build a case, many get denied who don't appear in court with a case prepared by a lawyer here in michigan not sure where you are living?

  • Oh I'm in Canada 🇨🇦

    And far away from claiming fatigue as a disability but good information for the future

  • Ok not sure about that system there, the system here in the states most are denied without a lawyer and fatigue and chronic pain are good cases if documented by a good hospital and doctor who is caring for you over time ....

  • I live in Aberdeen, Scotland. I suffer badly from fatigue and it affects me daily. The only way I see a future of working is if I do so from home which is what I planned to do anyway. I'm quite creative and have had a bit of interest in the things I do so hoping I can at least do this and work around this illness. Since I'm newly diagnosed I think I'd need to wait until I build some history with the hospital etc.

    Thanks so much for your input as I will investigate further!

  • Can I ask you why you need to talk to a lawyer or is that just the path you need to take?

  • Thanks so much everyone for taking the time to reply to me, it's so nice knowing others know how I feel. I had heard nothing about this disease before so everything is so new , including working my way around this site haha!

    I feel less blue than I did and I'm speaking with my GP Monday who will hopefully answer some of the questions I have floating around in my head.

    Thanks again !

  • Try taking B12 Vitamin. I use to be sleepy all day and up all night. I use to take Vitamin B12 during the day and melotonian at night. Hope this helps. Wish you all the best.

  • Thanks I will ask my doctor about that when I see her. Ive been rubbish at sleeping since I got my diagnosis but hopin this is just anxiety that'll get over soon 😊

    Thanks for your message

  • I work in a demanding role

    In flexible hours and rest at nights and weekends

  • Thanks for your message

  • I find the 5 full time days to be a lot .. I left my second job (part time) cuz I didn't have the energy to get it all done

    4 days would be good .. I'm exhausted Monday morning though 😕

  • Thanks for taking the time to send me a message

  • I find I use my sick time at work mostly for Fatigue to be honest. I just can't do it anymore when that time comes and I'm no good to anyone (cuz I'm not getting anything done). I can't concentrate when I'm that tired.

    and you're very welcome :)

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