For those of us fortunate enough to still work...

All your fibromyalgia experiences, questions and answers.

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For those of us fortunate enough to still work...

Postby Fyguy » Wed Jan 28, 2015 2:14 pm

How do you explain to your boss that you have an invisible illness and that you may not be able to do what your once did and may occasionally need time out or days off???
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Re: For those of us fortunate enough to still work...

Postby Zia2014 » Wed Jan 28, 2015 2:30 pm

Hi,

What sort of job do you do and where do you work, eg. large private/public org? Do you have an Occupational Health department?

Basically if you have recently been diagnosed (I'm guessing) then you need to sit down with your manager and tell them about fibro, it's not something a lot of people know much about. But if you give me more background to your personal situation and your workplace I can give you more advice :)
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Re: For those of us fortunate enough to still work...

Postby Trish140363 » Wed Jan 28, 2015 2:42 pm

U could get a gp or rhuematologist letter to explain that there are going to be days that's good and bad.. and on the bad days you may need time out or off...
that is one of the reason I left my job and started up my own business so I could take days off if needed..
good luck xx
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Re: For those of us fortunate enough to still work...

Postby FluppyPuffy » Wed Jan 28, 2015 2:50 pm

You could also provide your manager/employer with info about FM from a reputable source, such as NHS Choices or from the main UKFM site as well as details about how you have found yourself to be affected by different aspects of your job.
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Re: For those of us fortunate enough to still work...

Postby whiterose » Wed Jan 28, 2015 3:18 pm

i've found it really difficult because although I had fibro when I started work at my place, over the last 10 years it has become much worse. I'm off at the moment with a bad flare-up. I've had loads of different managers through the years and the manager at the moment does try, but how can she understand it when she's young and healthy? I just have to go through all the return to work meetings, and capability processes, and hope I can keep within the targets they keep setting.
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Re: For those of us fortunate enough to still work...

Postby Zia2014 » Wed Jan 28, 2015 3:25 pm

whiterose wrote:i've found it really difficult because although I had fibro when I started work at my place, over the last 10 years it has become much worse. I'm off at the moment with a bad flare-up. I've had loads of different managers through the years and the manager at the moment does try, but how can she understand it when she's young and healthy? I just have to go through all the return to work meetings, and capability processes, and hope I can keep within the targets they keep setting.


Do you have an Occ Health department?
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Re: For those of us fortunate enough to still work...

Postby ISCBE » Wed Jan 28, 2015 3:34 pm

Hi ya, I am fortunate to still work but yes I admit it can be difficult and currently signed off due to my fibro....... I was diagnosed 6 months ago and have been quite fortunate with my employer, and the fact that my HR rep also suffers from fibro in fact it is thanks to her I got my diagnosis which is actually neuropathic disorder and comes under the more recently preferred name of fibro.

You could try speaking with your HR dept first as it could be that there are other sufferers in the company and they the HR dept have experience of how to move forward with it in the working environment. I was very open with my Manager and after being diagnosed I held an informal meeting with my teams, my manager and my director. I explained why I had been off prior to my diagnosis and and had read up as much as possible, and also read up on the side affects of the drugs that I know I was on and or going to be put on. I explained that I have issues where I can loose my balance, that sometimes I try to stand up from my seat but my legs fail me and that I also have an issue in controlling my core temperature and suddenly get the sweats or over heat for no apparent reason. I explained that I had had these symptoms for a while and that I found it embarrassing and in turn cause anxiety in meetings etc. I also explained that sometimes I could be in the room and people talking to me but it felt that I was being talked at and wasn't actually taking in what was being said. This was not that I wasn't concentrating or being rude but sometimes when a flare up mentally was happening I was there in body but not in mind. I tried to put a positive spin on it and explain that until I am at a stage of learning to manage fibro with the help of my specialists it is a steep learning curve for me and I ask that they don't judge but work with me. I also explained that things like making the teas and coffees I had concerns about as I know through experience that I would forget who and what I was making and that some days my limbs would just give way on me and I could drop the tray or cups without control. I also explained that some days it would take me longer to walk in to work than others as some days I had to stop start walking to work. I then had a further chat with my manager and director and explained that I had times where I would get frustrated as I knew the answers that needed to be found but they just wouldn't come to me (fibro fog).

I have to admit I have an amazing Manager and sent him links to supporting documentation and shortly after he soon learnt when I was having bad days and it could see when I was having phantom pains and would message me and we would go for a chat and assess the projects I was working on and see what could be shared with other team members to assist me that day rather than take stuff away from me as that is counter productive to my own self esteem and mental health. My company also runs a flexi work scheme so it was agreed that I would consolidate my hours meaning I could work fit 5 working days in to 4. It means my official hours are 2 days of 8.75 hours a day off 2 days on at 8.75 hours and then the weekend. It allowed me to have a rest bite mid week and also fit my appointments in to my day off rather than it impacting in my working hours. IT was also decided as I am a senior member of the team that has the most knowledge on our main product which I support that is used globally by 23,000 people inhouse and clients that I create a KB and also give mini town halls to the teams to share the knowledge so I could take a step back from primary contact and become more of a consultant once other members had been approached with any issues.

I also explained that some days I would be floored by fibro and have an option to work from home when the bad days hit and couldn't physically get to work but always had to report in by phone and agree with my manager as to whether I signed in from home or took the day off as sick, on the understanding that due to prior sick days I would not be paid. This was working fine for the first couple of months until I started the meds. As I am sure that all of us who have started the meds route they mess with your body as it takes time for the bosy to adjust and is a re-learn thing for the body to stop fighting and start accepting. I am currently on long term sick as I had a huge flare up at the end of November and mentally found everything too much and something had to give before I ended up doing something stupid. I had a complete melt down at work and said I didn't know what to do for the best and that I felt like quitting there and then as trying to balance my personal life, my health, work and come to terms with just having fibro had broken me. He and HR sent me straight to the GP and told me to get his assistance and to listen to him and stop fighting the reality! I told them I couldn't do that as if I give up working I wouldn't be paid and need the finances to pay my mortgage bills and living costs. They told me to forget that my health is more important and to see what my GP suggested and take it from there.

I did as they told me and I am now on long term sick and when I called HR to tell them this they said they had spoken to my director who said straight away "we will pay him his full wage, I am not going to be responsible to add more pressure in giving him financial worries on top". They have been true to their word and now looking at how we can consolidate my sickness which is related to depression by fibro that my pay protection insurance plan will start paying out for my long term sick and both work and I know where we stand. IT allows them to get a temp/contractor to cover my work but they will continue to pay me in full until the insurance pay out kicks in. I am fortunate and know this is going to be a long run of being off but I am no good to them at the moment and work isn't any good for me and I can now focus fully on getting my self better mentally and manage fibro properly.

I should say I work for a large global American bank as an IT Project Manager and Applications Support analyst, as it may help understand what my work involves.

The main thing here is get as much info as you can and be open with your manager and supply supporting documentation websites so they can understand and empathise with the situation you are in. If you have started meds then provide that info and also what sid affects can be experienced as this helped my manager to understand and look out for the signs. It is all about EDUCATION!

Sorry for such a long response but I hope you and others find it helpful.

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Re: For those of us fortunate enough to still work...

Postby Zia2014 » Wed Jan 28, 2015 4:06 pm

Your employer sounds fantastic ISCBE! Tbh they have pretty much made every reasonable adjustment you could expect them to make which is rather unusual, but great.

Btw welcome to the forum, I see this is your first post :)
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Re: For those of us fortunate enough to still work...

Postby ISCBE » Wed Jan 28, 2015 4:25 pm

They really are fantastic and after years of suffering I have my diagnosis and now just need to be able to manage it so that I can be the best I can be and get back to work. I don't want to be on the sick the rest of my life just need to learn to manage it all and then return to work what ever it maybe :)

Thanks for the warm welcome :)
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Re: For those of us fortunate enough to still work...

Postby Zia2014 » Wed Jan 28, 2015 4:32 pm

No worries, this forum is great and very welcoming :)

I'm similar at the moment, on a merry go round of trying all the drugs to find something to help me :roll: so that hopefully one day I can sleep properly on a regular basis and live with the pain, as although I have moments where I can't it's not the norm. I do know that my energy is low so when I was working part time that was my maximum, and at the moment full time is out. I am hopeful that at some point in the future I will once again be able to work full time, but I'm not there yet.

I hope you get back to work soon and when you are ready.
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Re: For those of us fortunate enough to still work...

Postby whiterose » Wed Jan 28, 2015 4:33 pm

Zia2014 wrote:
whiterose wrote:i've found it really difficult because although I had fibro when I started work at my place, over the last 10 years it has become much worse. I'm off at the moment with a bad flare-up. I've had loads of different managers through the years and the manager at the moment does try, but how can she understand it when she's young and healthy? I just have to go through all the return to work meetings, and capability processes, and hope I can keep within the targets they keep setting.


Do you have an Occ Health department?


Yes and on their recommendation I have a special shift, which means I don't do early starts like everyone else. I may have to see them again, though as that was a few years ago.

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Re: For those of us fortunate enough to still work...

Postby Zia2014 » Wed Jan 28, 2015 4:50 pm

If it was a few years ago and you're having a flare up then yes you should push to go back, explain that things have changed and you need to update them and ask for their opinion. It can't hurt and they may advise on different targets or be able to help in some other way.

Good luck!
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Re: For those of us fortunate enough to still work...

Postby Monty99 » Wed Jan 28, 2015 5:51 pm

I printed out a Fibromyalgia fact sheet found on the internet via BUPA and gave it to my bosses, and my husband and daughter. Only then and only then did they start to understand. Good luck….
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Re: For those of us fortunate enough to still work...

Postby galio » Wed Jan 28, 2015 9:56 pm

if you have access to occupational health go see them, looking for info if your in the uk the arthritis research pages have good info on fibro, I was given an info sheet from the rheumatologist that diagnosed me last june, I took it to my work and they copied it so they could read it and pass it to anyone i was working with, I was at occy health before I returned to work after a year off but was prior to my diagnosis, ( I was off 20 months most of that time off was as I was caring for my daughter who was terminally ill rather than because of fibro) prior to my daughter becoming ill i had requested a move to a different school and a reduction in hours in the hope of cutting down my absence rate because of undiagnosed problems (fibro and hypermobility syndrome)as the way I had to work at the school i had been at for 5 years was making thinks worse and they could not make the adaptations I felt I needed to help, the new schools I am at were more able due to size of playground at one I can sit and keep an eye on everyone, the other school I only do one half hour playground duty daily rather than 15 min and hour daily in the bigger school, the cut in hours meant that I only lost 5 and a half hours weekly but that i only work half days tues and wed and that makes a huge difference, I am fortunate that one of my head teachers has also recently been diagnosed with fibro and like my self is still trying to come to terms with that and to keep working so understands when I am having a bad day. working in a school also means I get holidays at regular intervals and gives me a target to get to them with out time off, managed the last term before xmas but it was a struggle, I know if I keep having flares as often as i am just now I am going to have to get referred back to occupational health and look at other adjustments that I may need made. get as much info as you can about fibro and speak to hr or your manager and present them with the info to read as well as explaining how it affects you as we all know we are all affected differently and diferent things can trigger a flare or different people too.
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Re: For those of us fortunate enough to still work...

Postby ISCBE » Wed Jan 28, 2015 10:35 pm

I also found the NHS pages very helpful and especially when it came to the meds. I remember sending my manager the link to pregrabalin and lets just say he was shocked at the side effects etc.

There is a lot of info out there it's just not always that easy to find but by being here and as newbie here you have a wealth of experience supporting you.

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