Going back to work

[Daisy20-]

Hi I am newly diagnosed with decompsated cirrhosis, I feel fatigued most days and in pain the odd day I do feel a bit like my old self I get things done ie housework shopping ect but these days as I say only come maybe 3 times a week at most. Then after my burst of energy I am totally exhausted as if I’ve done to much! Has anybody felt like this and managed to get back to work ?

[Kristian]

I was working up to the point of transplant with similar feelings. It does all depend on individual circumstances and of course what work you'll be doing. Office work is less physical so more possible than say working in a shop or teaching where you're likely to be on your feet most of the day.

You can request reasonable adjustments to make it more possible, but sometimes we have to accept it might not be. It just may not be practical, again though that would depend on the work being done. Some roles are more flexible to work around with illness than others. Indeed one reasonable adjustment could be a change in role, but that would depend if such was available at your place of work.

So, just to finish. Yes it is possible and can be done. But, that may not always be the case.

Hope thats a little helpful at least.

[Daisy20- in reply to Kristian]

Thank you Kristian, to be honest I think I know in my case the answer is no I don’t have very reasonable employers.I work on a very busy holiday park and during peak dates you can be on your feet for your full shift running around checking people in ect the days obviously get longer and working weeks can end up going from 40 to 60 hours along with a lot of stress and abuse from unhappy customers. I know by law the company are legally not allowed to discriminate against disability and are to make reasonable adjustments to help me get back to work after been off sick, But that been said they make you feel so guilty asking for time off for any reason because you are leaving them short staffed you end up just not asking and just getting on with it. My husband is concerned this will be the case again if I go back and I’ll just end up back at the beginning we’re I was that poorly I couldn’t get out of bed I was that weak and ended up in hospital for weeks. I love my job so much but right now I think it’s time I put myself first and think about my health. My liver nurse has adviced against it for now I think I was was just clinging on to hope .Thank you again for the advice.

[Kristian in reply to Daisy20-]

I can certainly understand the desire to keep working, or go back to work, especially if its something you like doing. It also helps doing it as it gives you a bit of purpose and reason to keep some form of activity going. Otherwise it is very easy just to sit in the chair all day.

Good luck to you.

[wurzle]

Hi Daisy. I was first diagnosed in 2020 and was admitted to hospital in the October with acute liver failure and pneumonia. I left hospital 5 weeks later 5 1/2 stone lighter, very weak and hardly able to walk. It took a long time to recover. I had been retraining to become a domestic electrician and had paid for further training on testing and inspection, online learning and cardiff based practical training and assessment. I've had to accept that this has become too physically for me. Although my cirrhosis is fairly well compensated, I can only work physically for a couple of hours at a time before my glycogen levels become depleted and I get so exhausted I get really dizzy and disorientated and unsteady on my feet. So I've had to accept that I won't be able to do that and it is very frustrating as I've invested quite a lot in terms of money time and emotionally. I now care for my 90 year old father and do as much as I can in the garden without overdoing it.

I've just turned 56 and thought I still had another 10 years of work left in me. I don't have any pension as such and am having to live on carers allowance and pip but what savings I do have.are diminishing rapidly. I thought about trying to get some remote working, ideally part-time, in IT as I am a former software developer but even cerebral work can be challenging as my cognitive skills and short-term memory aren't always so great and I sometimes suffer a sort of brain fog probably as a result of HE plus sometimes a chronic fatigue will come over me all of a sudden.

Sorry if this post isn't full of.inspiration but I share your frustration at not being able to do as.much as I hoped. I'm hoping that my health will continue to improve so I can get some sort of work that I can do from home. I still freel I have a lot to offer and feel like I need to make up lost time. I suppose I'm putting too.many expectations on myself which adds to my stress levels which have a big impact on my physical and mental health.

I hope things work out for you.

Best wishes

Pipx

[Violet74 in reply to wurzle]

If you phone the Electrical Industries Charity they will pay for a holiday for you. I worked there so used to give grants to electricians. All the best

[wurzle in reply to Violet74]

Thanks. I might give that a try. Pipx

[Violet74]

You describe me to a tee. Struggling today went shopping yesterday.

[Readlots]

Hi Daisy, I’ve just made the difficult decision to give up work at 53. I feel so much better for it being able to spend my energy on things that matter to me. Still adjusting to the lack of income but it’s worth it not to have the stress and guilt. I might pick up some part time work in the future but I’m going to enjoy the summer in my garden. Could resign but go back and do casual work for you employer, zero hours so that you can pick and chose when you work? Might help them and you. Good luck with whatever decision you make.

[LorraineLouise]

Hi DaisyI am 65 years old. I was diagnosed six years ago .

I am able to work three days a week. I work a day, then rest a day. it works for me. I could never work two days in the world without getting rest in between. Just to let you know, you are not alone. In this fight. I wish you well.

Lorrainelouise