Does anyone work full time with fibro... - Fibromyalgia Acti...

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Does anyone work full time with fibromyalgia

Hayley95 profile image
16 Replies

Hello, since finding out I've got fibromyalgia 4 month ago im finding it alot hard to deal with, I want to work in really do, just finding it hard I've just recently got a job in start tomorrow full time from ,30 hour onwards but I am scared it could burn me out eventually, I've also got chronic fatigue too it got going on with my health. I just need advice please not sure how to deal with it, I just keep crying and im scared honestly I am, just need support and advice I feel like am fighting a losing battle. Please need some help x

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Hayley95 profile image
Hayley95
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16 Replies
achydunlin profile image
achydunlin

I used to, but totally crashed and burned and then went to part-time, had to give a up a job and phd that I loved and had to take almost a year off. It's taken me a long time to get a bit better. I'm now working part-time on a zero hours contract which suits me as I can work when I feel like it. But I'm 'lucky' as I have an income from elsewhere (a widows pension) that keeps me going a bit. I don't know how people on here work full-time and I take my hat off to them.

Have you thought about asking your employer for later start times if you are particularly bad in the mornings (I find my stiffness is worse in the morning) or alternatively earlier finish times? Or work a day from home if you have the kind of job that allows you to do that? Did you put on your application that you're disabled? If so, your employer has to make all possible reasonable adjustments so you can do your job.

Hayley95 profile image
Hayley95 in reply to achydunlin

I work in retail so can't work from home. I just bought a new car and j love driving so I want to earn money to keep my car. But I'm worried about how my body will take it.'I have worked since April so it getting back into it that worrying me and I didn't put disabled as there wasn't any questions about it. X

Nipper11 profile image
Nipper11 in reply to achydunlin

I worked with this illness for years didn't share the way I felt but as years went on I had no choice but to share what information I wanted with my bosses. Of course I felt they looked at me differently. I push forward and told them what would support me because at times I had problems speaking in meetings which was very emotional thing for me that I felt very weak. The stress levels of looking to hind this illness had come to an end and I left my company and took a job I could control rather than struggling with the job I loved. Don't be afraid to share your experience with your boss who might be able to help you. It's not a crime to live with a everyday illness. Big hug we are all normal living with something we have to deal with.

Springerpup profile image
Springerpup

I work full time but am lucky enough to be able to work from home and only go into the office once a week. You should definitely talk to your boss and/or HR (depending on the structure of the company) so you can explain your condition and work with them to make adjustments to help you. For example, I have special cushions and a footrest for my chair, screen stands to have the monitors at exactly the right height and angle etc. They also allow me to work earlier hours than everyone else to make travelling easier. What you need will depend on the exact work you're doing but they should be able to accommodate your needs. Good luck!

FibroGirlUK profile image
FibroGirlUK

I'm struggling to work as a consultant. I've also been diagnosed with chronic fatigue syndrome and after a few weeks of pretty scary tiredness and days where I slept for 17 hours in the safety of my bed I no longer drive when I know it is bad. I'm not prepared to risk it.

Bobby16 profile image
Bobby16

I work full time but currently off sick. I'm considering if I can keep on managing and I can't. I'm gonna have to look to reduce my hours drastically to enable me to stay in work. I'm the main wage earner so it's going to affect me enormously but I feel like I'm killing myself trying to keep going full time.

rottweiller69 profile image
rottweiller69

good luck with your decision..only you can decide what you are capable of..try and talk to your boss..im not being negative but I struggled with my boss as she wasn't as understanding but I think I have finally got a understanding with her and everyone who I work with...but good luck with your boss..just be strong 💪 xx

DanielleGemma profile image
DanielleGemma

Hey hun,

I work full time and I am also taking my accountancy degree outside of work!

It’s so hard as like you I suffer with Fibro and CFS but for me work gives me a purpose and something to focus on which helps me to get through the days. I am so busy sometimes that I almost forget that I don’t feel well if that makes sense? I have my tens machine, magnesium spray, a blanket and slippers at work haha which all help and I have explained to my boss about how my illness works and how sometimes I might need to just get up and move around for a few minutes etc. A lot of employers are really supportive hun! Don’t let your fears stop you from achieving your goals! Give it a go; if it’s too hard then you haven’t lost anything! The first few weeks will be the hardest whilst your body adjusts etc but I know you can do it ♥️🌻😘

Hayley95 profile image
Hayley95 in reply to DanielleGemma

Thank you, I'm just scared

Of losing everything. I just don't want people to judge me behind my back in work. I haven't really got to know them yet but just got to take each day as it comes, this week I've

Got 2 early start at 8:30 till 6:15 I feel like it going to really effect me during the next few week or even days. For me, I'm trying to pace myself but I'm in so much pain with my back and constant ache never goes away, also I suffer from depression and really bad anxiety too. I'm dead nervous before i start work. It my first day today not sure how it will go. X

DanielleGemma profile image
DanielleGemma in reply to Hayley95

My best advice, and I know this is so hard, as I also suffer with depression and anxiety so I know exactly how you feel, is try not to worry about the future, like you said just take it one day at a time and do the best that you can! People, will unfortunately always judge you, even if you didn't have Fibro but you just need to surround yourself with positive people who make you feel better and support you every step of the way! Please PM me if you are struggling and I hope your first day goes well 🤗🌹🤗🌹

Hayley95 profile image
Hayley95 in reply to DanielleGemma

Hello, I just done my first day at work 6 hours and now I feel really ill, I'm in so much pain. I can't do long days like that from Thursday to Saturday I'm in all day 8 hours. I'm scared as I just been in floods of tears as I can't cope with how my body is rifht

Now I'm sick of all the pain and aches :( I can't do it anymore

robpw profile image
robpw in reply to Hayley95

Have you spoken to your employer - can you do a few hours ? Spread across the week perhaps

Hayley95 profile image
Hayley95 in reply to robpw

Maybe I could but what stressed me out the most was all day for 6 hours I was just stood about doing nothing in the shop. There wasn't anything to do. It made me

More tired and has effect me today.

Molly_1919 profile image
Molly_1919

I was diagnosed 30 odd years ago. I had no choice about work and having had to give up one career as a radiographer due to injury, I worked full time in one job and part time in two others whilst I studied for another three years to qualify as a chiropodist. I worked full time up until 4 yrs ago when I gradually reduced my hours and now can only manage two days treating and one on paperwork. I also have one grandchild who is brain damaged one night and day a week. To be honest if I’d had a choice I would have stopped working 15 yrs ago but all that would have achieved would have been the same amount of pain and fatigue and more time to think about it and get stiff. If you can keep going then do so for as long as you can. I’m lucky being self employed as I can arrange my workload to suit my needs. But I firmly believe that if you give this condition a millimetre it will take a mile and won’t give it back. Don’t get down - it’s hard but do-able 😊

robpw profile image
robpw

You have to find your own limits - I have worked full time and had to give it up due to collapsing at work - i am studying full time now but it good cause if I need a break I can use it . It’s not easy someday and I have to push through a lot but only you know you.

1. Do tell your employer - they are legally obliged to arrange reasonable adjustments etc

2. Do take time when you need it to rest

3. Don’t over do it - it really is ok to say no

Hayley95 profile image
Hayley95 in reply to robpw

Will I be okay to take reglaur breaks when I like. Just sick of this pain. Can't take much more

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