Work

[Hayls-b]

How is everyone managing working with fibro

[desquinn Partner Volunteer FMAUK Trustee]

Lots of people do and continue to with some struggling and panicking and some having a balance that works for them that is better than it was before fibro. Variety in fibro and peoples lives means that there is a lot of variety in employment situations.

Check our our employment booklets at fmauk.org/publications

[LoneEra]

I think what Des said is very important - people have totally different experiences of fibro and different life circumstances.

But...I know there are quite a few people on here who still work - either for themselves or for an employer. And either full-time or part time.

I am a freelance magazine Editor. I have one large client who I work for 90% of the time - so it’s pretty stable income. But because I’m freelance, I decide my own working hours. That’s a godsend for me. I also work from home - and have done for 8 years x

[Themanwithnoname]

I dont. I wish i could hold down a job. gov.uk/access-to-work maybe of use to help with getting into work or keeping you in work.

[Hayls-b]

I am working just finding it difficult 😞

[LoneEra in reply to Hayls-b]

What kind of job/skills do you have, if you don’t mind giving a bit of detail? Maybe then we could give some suggestions 🙂

[Wineo29 in reply to LoneEra]

I’mReally struggling I’m making mistakes all the time which I

Have never done before i feel like a failure 😣

[Hayls-b in reply to Wineo29]

Don’t ever feel like a failure, your doing your best, big hugs 🤗

[LoneEra in reply to Wineo29]

Feel for you. It’s horrible when this happens. So frustrating and if you’re anything like me you blame yourself.

I find the mistakes typically happen when I am burnt out. Are you able to take a little time off work? Just a week or two to recalibrate?

Also, do you think you need a medication review? Could you ask your GP about other options?

Happy to chat more on this, especially if you think you need to make bigger changes - like cutting hours or swapping jobs. There could be things your employer could adjust to help you as well x

[Wineo29 in reply to LoneEra]

I spoke to my GP last week asked for painkillers as the antidepressant for nerve pain are not helping. I asked for pregabalin and he said that’s for people in pain every day and not for flare ups. It wasn’t until I got off the phone I thought I am in pain everyday just don’t come home and sleep until the next every day which is what I’m doing at the moment but I can’t concentrate and do my job . I’m logging in at weekend to catch up.

[Wineo29 in reply to Wineo29]

I can’t afford toReduce my hours wish is could

[LoneEra in reply to Wineo29]

I hear you. My BF has been out of work for 18 months and I could do with working less but can’t. It’s hard ❤️

[LoneEra in reply to Wineo29]

That’s no good when your weekend is being taken over as well.

I think it’s worth speaking with your GP again and explaining that the pain is everyday - and it’s impacting your ability to work.

Do you feel up to having an informal chat with your employer/manager or is that too difficult?

[Wineo29 in reply to LoneEra]

No he’s really lovely tbh . I just can’t afford to drop hours etc

[LoneEra in reply to Wineo29]

Great that he’s lovely. In that case, you might be able to chat to him and see if there are any reasonable adjustments that you can agree on. This could be reallocating some minor duties that make your role harder or giving you regular breaks from your workstation (just examples).

I’m just about to step out the door but I’ll send you some links later so you can read about this.

[Wineo29 in reply to LoneEra]

Thank you so much x

[LoneEra in reply to Wineo29]

Just coming back to you on the reasonable adjustments stuff, as promised:

scope.org.uk/advice-and-sup...

fmauk.org/dmdocuments/Emplo...

Hope that helps xx

[Hayls-b]

I’m a care assistant but studying to get on to a nursing degree as well

[Greenpeace in reply to Hayls-b]

Hi Hayls-b , amongst other things, one important part of managing Fibro is pacing, and that’s the one thing that most of us cannot manage well.

Each of us have our own unique family and work situations, and how we manage them is also very much an individual choice. So if you are working as a Care Assisant just now, and also studying, and also seeing to your own needs, it’s quite a balancing act.

Up until I retired 5 yrs ago, I worked 5 mornings, and every other weekend as a Community Nurse. It was only to get my Pension that I kept going. My children are all adults now. I somehow managed to pace myself by going to bed early, having a rest in the afternoon, and catching up with other things as and when needed. My hubby did all the cooking, and most of the housework.

It worked for me at the time, but many a time I questioned myself as to why I was doing this. I’m also older than you, and have other Health issues.

Only you can decide the best way forward, but your current employment, and a Nursing Career are jobs that are demanding, both Mentally and Physically, so decide wisely.

Good luck.

GP. 😊😊

[LoneEra in reply to Hayls-b]

Oh wow, good on you studying for the degree. Those are very demanding professions, though! GreenPeace has given you some good advice there. All I can add is that being open with your employer can be tough but could lead to adjustments that can assist x

[JayCeon]

I had to go down from 45h/wk to 0 for 10 months. I tried building up again via rehab 10/20/30, but 28h was way too much, now I manage 10h/wk fairly well... Demanding job with lots of quick task-switching, now scaled down a lot. Getting up early sometimes is one of the most challenging aspects, but I'll be able to get that adjusted in a few months ...

[Anth14]

This is really interesting conversation. Recently been diagnosed with Fibromyalgia, i have struggled for the past 8 years with pain in my legs, back and neck. Only until i have had cbt, my doctor advised i have fibromyalgia. Always worked in customer service for my sins, however recently only realised that I also have fibro fog and unfortunately been signed off work for 6 weeks with it. Considering part time work phased return, don't know if I can work in customer service anymore, or in full time work. Thinking of working part time and retraining. But what area can you work with Fibromyalgia? Confused and struggling..

[LoneEra in reply to Anth14]

I know a few people work in schools doing admin etc as the hours can be quite fibro friendly. Might this be something you’d consider?

[Anth14 in reply to LoneEra]

Thank you 💝

[LoneEra in reply to Anth14]

You’re welcome! 😘

[Hayls-b]

I know it’s so hard, I really want to train as a nurse but on the other hand I’m thinking is it worth it 🤗

[Wineo29 in reply to Hayls-b]

Is there a way to do this over a longer period of time?

[Misslostmarbles]

I work 2 days a week and this is my limit. I also have 4 children so find it hard getting a balance but you have to know your limits. I got diagnosed in 2016. My manager is supportive and we try different things to help but not a lot works. You sound like you are taking a lot on and if this is manageable for you then good luck.

[JayCeon]

My requirements nowadays are: I need to spread it over the week, 1-3h/day. Can't really get up much before 8am, that can spoil the week (as from next week I have to get up at 6:30 once a week for 10 weeks). Talking thru thick mask as little and quietly as possible, not too much to a lot of people. Being able to lie down with my laptop while working. Demanding video conferences under 30 mins. Or lie down in between. Sit, stand, walk whenever I need to. Being able to decide myself when I am able to do what or how long. Commuting is otherwise OK. Also good if I'm finished when I'm finished, so I don't have to tame the urge of getting something perfect. 😜🤪🙄

[Dinkie]

You are entitled to an occupational health assessment to see what reasonable adjustments could be made to your work environment. My employer arranged one against my wishes but have to say it was the best thing that could have happened. It's enabled me to stay employed. I now have a car park space next to the door, handrails and ramps installed, modified uniform (I can't lift my arms up to put things over my head), extra breaks should I need it, more flexible hours - this enables me to work more in summer (I can't drive in the dark) and less in winter, special chair. It was certainly worth doing.