Managing work with Fibro & CFS

[PipPhilippa]

Managing work & employers. Hello, how do those who manage work cope? I can now only manage to work part time due to having Fibro & CFS. Working as a Support Carer for the council, providing support to those with Dementia in their own homes. A role I enjoy. I’ve worked in care for a few years now. When attending the interview for the current job I was very honest about my having the condition & said that I couldn’t manage double back shifts or having to be up & out on a shift following an afternoon/evening shift as that had caused a huge flare up in a previous job & was the only time in all the years I’ve had the condition that it was the reason for being off work on the sick for a fortnight. I went on to explain how proactive I am at doing all I can to ‘manage’ the condition with healthy eating & exercise & staying clear of pushing boundaries I knew caused problems. I’d worked for the organisation previously a few years before & only left at that time as I needed more hours than the 25 they worked by. I’d reapplied for the opposite reason, that I can now only manage part time hours but still wanted to do a role I enjoyed. I was honest at that interview to the point I was sure I’d talked myself out of a job but they also knew my work ethic & the type of carer that I was. The interview had gone well but I expected to have a sorry but we can’t offer you a position due to not being able to complete some tasks. I was delighted to be contacted by the main manager not only offering me a position but the choice of team to join though she knew I’d wanted to join the dementia team & that is what I chose. The immediate manager for that team was away on holiday at the time of interview & I felt, when we met that she wasn’t so keen on having someone with the condition on her team as, over the following months during supervisions she would constantly bring up how the shifts are part of the job but they’d help if they could. Generally they have, putting an evening shift before a day off & not giving me double back shifts. I’d even had a glowing praise from her at my last supervision where she said what an excellent carer I was & that she was happy I was on her team. I thought I could finally breath without stressing about what a rota may bring. I was recently off work for 3 months due to a head injury & post concussion syndrome & on my return to work meeting, she again started the shifts are par for the course etc. I said that the whole point of being honest at interview was if offered the job they were taking me on l owing I couldn’t manage some things or they could have chosen not to take me on. Now this week I’ve got calls to cover after an evening shift 11 miles away from where I live, not even in my area & im again working an afternoon/eve shift Sunday & they’ve now added 3 lunch calls before that starts. I can’t help but feel there’s a point being made here. I can only remain well if I steer clear of certain things & this isn’t helping. I’m thinking it’s time to look for something else where I’m regarded (as I have been in the past) & not made to feel in the wrong because I have the blasted condition. How do others manage work with this condition? I have to work financially though I want to work too but it’s getting harder as time goes on. Pip

[desquinn Partner Volunteer FMAUK Trustee]

Sorry did not manage to read all your post as it was one block of text and my eyes are not great at present. However, I would suggest you look at FMA UKs employment booklets at fmauk.org/publications.

[CheetieCat]

Hi, I know how you're feeling I work in social care 'part time' as a support worker and right now can't even get two days off together in the same week!

Constantly fielding calls to cover this that and the other due to staffing even though I've told them I'm unable to do any more!

TL well is aware of my health concerns too & last saw Occ Health in 2015 who stated the Equality Act 2010 comes into play here.

Also stated I'm more than capable of continuing in my role but if they could modify my hours allowing me time to rest between long supports that would be really good for me.

It's so unfair, we know how to manage our health to continue working as long as we possibly can and some employers seem to make us feel more ill, more disabled as we're having to constantly talk about our health!

Stick to your guns and tell them no, as agreed you cannot work these types of shifts and if they persist tell them you will not be there.

If you work these shifts even once then that'll be it, they'll expect it from now on.

Can you contact your HR department directly? Union member?

[PipPhilippa in reply to CheetieCat]

Hello CheetieCat,

Thanks for replying. Like yourself, I’ve found it’s the timing/schedule of shifts that can really cause the problems. With our work as Support Carers we do have a lot of physical work, but in the main, I can manage that ok as long as I have the rest in between shifts. I can’t manage the double backs or being up & out early following an arvo/eve shift as it has quite a negative affect. I imagine you’re similar to me in that, what you do today will physically affect you tomorrow?

I love the support work, though challenging (I support folk with dementia) but it’s so rewarding & id hate the condition to be a barrier to doing that role in some capacity. I want to be an asset at work not a problem but they knew my limitations when offering me the position.

Take care lovely. Pip S.Wales

[CheetieCat in reply to PipPhilippa]

Hi Pip, Yes that's the biggest issue going from a late to an early is virtually impossible for us and so difficult for managers to understand it seems.🙃The irony is not lost that we are in a caring profession until it comes to the staff providing the care.🤷

I support Adults with Learning Disabilities, this is my 20th year! Kinda like it 🤣 You take care too! x

[PipPhilippa in reply to CheetieCat]

That is so true & something often talked about with colleagues & other Support Carers. And people wonder why so many carers/nurses/similar are going on the sick with stress & burn out and leaving the proffession. I was recently told by colleagues that recent campaigns to recruit had no applications! Not surprising as people are getting fed up with doing this role without a decent salary etc for doing it.

I'm working an arvo/eve today. A colleague kindly swapped the day shift I'd been given. I'm not a fan of the arvo/eve shift as my energy levels drop dramatically from about 3pm. If I had a battery bar on me like the mobile phones, I'm sure it would be blinking at me every arvo to recharge. I also have to be mindful what I do during the day so I don't use up my energy tokens (for a way to explain it ) otherwise it makes that shift harder & the physical effects the following day worse. I've a day shift tomorrow. The first call isn't until 11am but I've an 11 mile drive to that. I know we're short staffed at present so I'll manage that as best I can.

Some people have said perhaps its best not to do such a physical job, but when you've got Fibro/CFS, it doesnt matter really what the job is does it. It has an impact on everything we do & I'd rather do a job that I enjoy if possible.

It;s lovely to have feedback & thoughts from others in a similar position. I know that the condition can affect us all differently, though we have a lot of common symptoms & some are battling other conditions alongside the fibro too. It's especially good to hear from a fellow Carer.

Take care

[Dinkie]

Your employers have a duty of care and you are covered under the Equality Act 2010.

Personally I would ask to have an occupational health assessment and tell them everything you have listed above. Your employers should do everything in their power to ensure you stay in employment. However they do not have to agree to the recommendations made by occupational health but if they make things difficult they then leave themselves open to constructive dismissal claim.

Been through it with my late husband when his employers decided that cancer, two heart attacks and GCA/PMR were minor health issues. Cost his employers a considerable amount in compensation.

Personally I've been through the occupational health assessment and have to say it was the best thing that could have happened. Since my assessment in 2014 I have stayed in employment with the same company.

I wish you luck finding a solution that works for you.

[PipPhilippa in reply to Dinkie]

Hi Dinkie,

Thanks for your comments. I’m sorry to hear about your husband & your situation with work also.

I have had an Occ Health assessment when I first started over 2 years ago & she works for the organisation & clearly had no understanding of the condition. Just reported I was able for the work but didn’t listen to the part where I explained I remain well as long as I steer clear of certain situations. I’d explained my history as I did the interview panel.

Work have moved some things around as I’d been upset & anxious this week. I’ve a meeting with my manager later before my shift as she said she’s worried about me.

I’m now seriously looking at other options work wise where more regulated hours would likely be more beneficial rather than the shifts. My hours are 25 a week but can be a bit more when times are busy but the way the schedule is done sometimes it feels more than that . I have tried full time just over 3 years ago but it was too much.

Take care & best wishes to you 😊 Pip S.Wales

[R-OD]

Hi you are being discriminated against your manager may not realise this. I would write to your employer so you have a record explaining as you have done on here. Financially do you receive PIP? I would claim that and speak to Union I can no longer do the job I love and Unison are helping me I am looking to medically retire, if you are not in the union I would join one or see the disability advisor at CAB good luck x

[PipPhilippa in reply to R-OD]

Hello R-OD,

Thanks for your reply & advice. I’m not actually in a union & have not thought of applying for PIP as, generally I can manage ok when I stay clear of the boundaries I know not to cross & thought PIP was really for those much worse than myself. I try hard to keep as fit as possible, walking my dogs & I’ve started swimming & doing gentle exercises at home done for me by my son who is a PT instructor.

Sometimes I wish I could finish work as the tiredness, fatigue, muscle stiffness & pain can be a right millstone but I don’t t want to finish on medical reasons unless it’s absolutely necessary & although I don’t earn a big salary I like that I’m doing what I can. I am constantly worried about how I’ll manage as time goes on though but doubt very much I would be considered for PIP or not at present anyway.

Work have now rearranged some shifts which has helped but we’re short staffed & they’re stuck which is why they’ve looked to me to cover others calls. Like all of us here, I hate not being able to do what I could once do without problems.

Im now looking at what options there might be in other jobs where a more regulated work pattern would be more beneficial & manageable.

I’m sorry you’ve had to finish work that you too enjoyed. Take care, best wishes, Pip South Wales 😊