Work and life

[Jasmeet12]

Im thinking of giving up work as Im really struggling to maintain my health and life. Does this ring any bells with anyone else?

[Hazel_Angelstar Administrator FMA UK Staff]

You need to do what is best for you. I've had to give up working twice in the past, due to my health simply because I was making my symptoms worse and had no life outside work. I'm working again part time now, but can manage the hours without significantly affecting my fibro

If you are considering leaving work, it may be worth getting some advice, especially if you want to claim benefits. For example, it may be better to go on sick leave and allow work to pay you off, rather than you leave - as this can stop you from getting benefits in certain situations

Citizens advice, local authority welfare rights or our benefits team on 0300 999 0055 (Mon, Wed, Fri 10.00-12.00) or email [e-mail] can help

[Onedaymore1 in reply to Hazel_Angelstar]

what do you mean by work (pay you off)? Please x

[Hazel_Angelstar Administrator FMA UK Staff in reply to Onedaymore1]

Work can terminate your contract on health grounds (or possibly ill health retirement if you have a pension scheme) xxx

[Onedaymore1 in reply to Hazel_Angelstar]

I wondered if that’s what you meant ill health retirement. I do have & pay into a workplace pension although, the provider keeps changing so unsure if when it changes, any pre-existing known illnesses are excluded from the new pension providers early retirement. Not even sure if that’s even a thing but it is with other I’ll heath,travel,life insurance etc. Also, I worry about putting myself in a catch 22 situation with work. Not sure, but If I asked for my employer to consider Supporting a request for I’ll health early retirement, then I am not formally, basically saying I am too ill to work /work ever again? What if I make this request & I am rejected, works Doctor doesn’t agree (bear in mind & I say this with a’tongue in cheek’ they will no doubt focus on the ‘imaginary, made up’ hypochondriac’ of FMS,CFS & if PIP don’t believe me 😫) and the request is rejected, couldn’t my Employer then use my declaration of being unfit to continue working against me /use it to sack me? Honestly, I work for a large regional corporate company but they just don’t have a good grip on how to look after their duty of care to me as a disabled Employee. It’s shocking how behind they are on understanding diversity & inclusion, reasonable adjustments requests & consideration (they insisted I follow & fill in a statutory flexible working request, rather than understand I was asking for a reasonable adjustment under the equality act to reduce from 5 days to 4 days & then turned my flexible working request anyhow. Then a toxic discussion ensued, with my Manager accusing me of being unreasonable & wanting preferential treatment 😳! And, said, ‘don’t you think we’d all like to just work 4 days instead of 5 days. I was politely asking if my Manager could at least refer my request as a reasonable adjustment due to disability to HR for second opinion. Managers raised voice in middle of busy office that he/she had been doing this for years & didn’t need to go to HR. Even, made some reference to my not being in a “wheelchair or anything like that” as that’s when he/she would speak to HR. Honestly, it’s very bad ! Between Employer & DWP PIP process, it makes me more I’ll /flare ups. 😵‍💫

[Jasmeet12 in reply to Hazel_Angelstar]

Thank you for your response but im self employed, so no cgance of that happening. I am appling for PIP though.

[Blue1927]

I had to give up work because of my fibro. Never not worked so was a very hard decision to make. I just couldn’t function anymore so decided to finish. Now I know it was my best decision ever, I can manage my day with rest etc and it has helped me so much. Seek advice as you can claim PIP and New Style ESA. I finished work then found out about these benefits and am lucky to be receiving both ongoing xx

[Jasmeet12 in reply to Blue1927]

What is ESA?

[Blue1927 in reply to Jasmeet12]

It’s Employment and Support Allowance. Basically it’s based on the amount of National Insurance Contributions you have paid over the last 2-3 years. If you have paid enough then you could claim for a year and then there is a review (I had telephone review) and they decide whether your fit enough to see employment or put you in the Support Group, where they will continue to pay you and you do not have to look for work. Hope that explains it x

[Jasmeet12 in reply to Blue1927]

Yes thank you

[1whitestar]

I'm in this situation I've bean back to work back and forth in the community. This has nearly bean a year diagnosed with fibromyalgia but something else is going on my fingers and toes are swollen warm like on fire can't sleep properly forget get dizzy if I do any physical work I'm bed bound for 4 to 5 days. My jaw can seize up to and I am having to push my mouth open. So I take each day as it is now I don't plan anything I haven't rode my bike for a year . I am just starting small walks. Now I've bean signed off for for 3 months so far. I get stressed and anxious and I can't cope at the moment so I won't be going back to work. I've really tried my best and sometimes I just think it is our body's saying stop . We need to take care of our selves. Yes I've lost money etc but what's important is our health and to be around people who help us and make us happy. Hope this helps . 🙏

[Lizmc1995]

rings true with me. I’m currently on long term sick from work as need time to rest and need to decide what I’m going to do

[Uellow22 in reply to Lizmc1995]

Me too.....how long have you been on sick leave, may I ask if it's not too personal. I have been since January last year!!!

[Lizmc1995 in reply to Uellow22]

I’m on long term sick so get 55% of my salary from my employer. I’ve been on this since last summer. I’ve been with my employer since 2001 and exhausted my 6 months full sick pay in a rolling year so went on this

[Onedaymore1 in reply to Uellow22]

are you being supported by your employer/still being paid? As your 12 month on sickness abscence?

[Uellow22 in reply to Onedaymore1]

Hi Dragonfly,I live in France and the system is very different here.

I was wondering how long you have been off work as a comparison to myself. I waited years for a diagnosis and finally diagnosed in December 2021.

The same day as my initial sick leave my mum was urgently taken into hospital (parents live in France also). She had a heart attack, a pulmonary embolism so was in IC for a week during no visit COVID ban. She was then diagnosed with stage 4 cancer.

My husband is an unwell man too so last year and this is very tough. He has also been in the UK since just after Xmas as his mum has broken her ankle and needs him for at least another 5/6 weeks.

My poor darling Mum has been very poorly of late, 36kilos & perhaps coming to the end of her life and you know I truly haven't had the time to properly start a new way of living for myself as yet.

I hadn't planned to write such s long post but I think it's probably beneficial to talk about it.

I am seeing a fantastic phycologist so that's brilliant for me and my 14 year old son his hilarious 😆 children are amazing distractions.

Not an easy living with illness all around him either but we talk openly about everything.

I am seriously considering early retirement as adding work to my life at the moment is definitely too much. I'll be 55 in April 🤫😝

Thank you for listening and I bet you wished you hadn't asked now!!!!!

Have a good day 😉

Yellow 💛☘️💛💚💛☘️

[JustAnotherOne1]

If you've been employed for over two years your employer cant lay you off. You could explain your situation to them and take time off to consider? I finished my career over 3 yrs ago but am still employed through the same employer. Be prepared to be able to prove yourself, and also be up for the fight with DWP etc. Not working has certainly helped but the boredom can also be overwhelming

[Al10]

I waited far too long to accept I was destroying my health continuing to do a job I could no longer manage.

I could do it. I would always recover ready for the next shift. Wouldn't I? Until I couldn't didn't, even after taking sick leave; For ages. Embarrassingly long!!

I was in denial too long and I regret that. I just didn't know the word quit. I had fibro but I was still a hundred times more capable and strong than most people. Heck, I was in pain so much it was my normal. If pain actually stopped me doing something it was B A D.

And so, life decided it would make my pain B A D and then some. I was stopped in my tracks. OMG, I was disabled! I could barely shuffle from my bed to the toilet, just a few short steps. Regret hardly covers my feelings over what I allowed to happen to myself. Because I had simply refused to quit until I was stopped. I had become a victim and it was my fault. I'd ignored every warning that I was destroying my body. It was devastating.

When you live with pain it is difficult to distinguish normal fibro pain, from damage arising from overdoing, etc. I had a hard physical job and it was normal to ache after a shift, or during? You get over it and you don't complain. It doesn't do to show weakness at work, does it? looking back, it was a toxic competitive environment. Our bosses should have been more vigilant but of course, they were benefitting. People worked hard and fast and accidents were going to happen. If you were weak, you were bullied. So I wasn't weak. Refused to be weak. Stupid huh?

Since being forced to quit, I've learned to listen to my body. I've learned to be kinder to it. More aware and thoughtful. And finally, it is being kinder to me. I realise so much of my pain was caused by pushing my body too hard, too often. Then, when I had done damage, I had no respite because of my fibro sleep disorder. The sleep time that the body needs to repair the body, was not there for me and so of course my fibro was going to worsen. I can't undo all the damage I did and so if I have any advice for any other fibros, I'd say, don't do what I did. For goodness sakes listen to your body and be kind to it, before you break it.

[Fadeddenimcutoff in reply to Al10]

Hi Al10 your post is exactly what I have been through, forcing myself through work in a toxic masculine environment which has been so harmful, pride pushing me on. I would suffer on my days off just to make sure I'd get through each shift. Finally now I am listening to my body and taking it easier. Thanks.

[Al10 in reply to Fadeddenimcutoff]

I'm sorry you had to deal with that. I fear it is all too common. Women can be toxic too, especially to other women. Determined to be superwomen and better than everyone else, including 'piffly' men!. Happy to be martyrs, and then complaining bitterly that others (and we all know who they mean!) don't pull their weight.

If anyone dared to have a day off, sick or otherwise, they would find they weren't missed, indeed, it was made clear, that person (having let the side down by not being there,) wasn't really needed; At all! So horrid and undermining.

I was sorry to give up work because I enjoyed the actual work, being busy and useful but I never missed that toxic stupidly competitive environment. I've often wondered what I could have done differently to change the culture but all I can think of was I needed to change myself. To refuse to play the game or care about the underlying bullying attitude. Pretty difficult because women are extremely skilled at identifying and exploiting weakness in others.

[Jasmeet12 in reply to Al10]

Well I must say that is very bravely put and said. I am frightened to be honest to those i love around me how much im suffering. I know i have to do something about work but work is all I know. Ive always worked hard, blood, sweat and tears with my business and had to let go of that last year. Started a solo one last year with no physical work as such and maintaining the roughly 16 hours. I found this is hard to, im now having to reduce that too. It deeply saddens me and this is my safe place to write things like this and the first time ive actually written about it too.

[Dinkie]

If you are employed then you are entitled to seek an occupational health assessment. Your employer should be able to arrange this for you, if they know you have health conditions that impact on your work. Once the report is in (you are entitled to see the report and request amendments before your employer sees it) you can discuss with your employer any suggestions for reasonable adjustments.

I went through this procedure. I didn't want to but have to say I had it done several years ago and have remained employed with adjustments. Like you I was convinced I would have to give up work although I didn't want to as I knew I would suffer mentally and financially if I did. The agreed adjustments really have helped.

Maybe explore this option if you feel it could help.

[Fadeddenimcutoff]

Hi, I have reached this point! Been off work since April 2022. Going through the procedures with HR and management over this time. Seen occupational health many times. They have been good over this time, but there is only going to be one outcome; eventually I'm going to have to finish work because I'm struggling to cope on any level. To be honest I will be glad when I finish because the stress just sets more symptoms & pain off.

[Nelly1]

I think this post was a reply to yours.

healthunlocked.com/fibromya....

[fmlife]

if your earning less than £40,000 a year should go speak to the job centre i.e benefits universal credit. According to Martin Lewis.

may find speaking to cab citizens advice useful, it is best to know all before committing.

ESA = employment support allowance