Work, work, work.

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Work, work, work.

Postby LozBeanz » Tue Jun 02, 2015 12:22 am

Hello everyone, relatively new to using this forum.

I was wondering if anyone has any advice/experience to share with me with regards to work.
I work full time (well, try to!) and have done for a few years. I have FM and Endometriosis which I both find incredibly difficult to live with although I have come to terms with it.

This week is the second time in 3 months I have been written off work for a week by my doctor due to the chronic fatigue and the chronic pain I am in. I feel guilty about this as the office which I work in is quite small and it has increased the work load for the girls I work with.

I know I shouldn't feel guilty but I can't seem to shift it. The people I work with don't understand the condition well and I feel they do judge me as the one who is always unwell. Does anyone have any advice or similar experiences/feelings?

Should I cut down to part time work and make financial issues more stressful, or stay full time and become stressed?!?!

Hope to hear from you all,

Lauren x
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Re: Work, work, work.

Postby Bexter » Tue Jun 02, 2015 1:19 am

Hi Lauren

I really don't know how your coping working full time. I also have other conditions so I can't work anymore, I wish I could. I would look into PIP to see if u can claim anything at all as u can claim and be in work and then if u are successful you might be able to go part time.
I'm very new to this site as iv only been diagnosed 4 months ago. I can't believe that u can work as I can't even manage a week without something wiping me totally out.
I really do hope that you manage to be able to claim something so u can at least go part time. Would your GP support your claim? I have a fantastic GP who has got me so much help, I don't know what I would of done without her.
I hope you have a good GP and I wish you good luck

Becky x
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Re: Work, work, work.

Postby LozBeanz » Tue Jun 02, 2015 1:42 am

Hi Becky thank you so much for your reply.

I was disgnosed at 14/15 so I was very young. It was very bad and I was very unwell. I had to commit for years to the different therapies I had access to as a child. It sounds silly but I learned how to be a kid with FM but I'm new to being an independent adult with it. If I am honest i'm not coping with work. I'm in pain all day and waking up in the morning is the worst. I force myself to do it really and some days are better than others. However, I have just hit a wall now and I am becoming worse again which I worked so hard to come back from.

The reason I work full time is firstly because I have taught myself routine for 5 years so even though it'd hard I like to keep the routine. Being out in the real world does make me feel better and less isolated.

I will try the route of PIP, i got told I wasn't entitled to anything as my partner works full time. in their eyes he can afford to pay for both of us but in reality he can't yet!

My doctor would support it as she is brilliant but doesn't know a lot about the condition. The hospitals I went to were AMAZING though.

So how are you doing after 4 months? If you keep working at it the symptoms can get better. I am a totally different person now to who I was when I was diagnosed, in a very dark place. Having this condition and being able to fight it and work with it so it doesn't control you as much does give you an amazing feeling when you notice the difference in yourself, makes you feel proud :)

It'll always be here but just understanding how others feel I see as a gift that not everyone has, we can help each other out x
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Re: Work, work, work.

Postby Hannah24 » Tue Jun 02, 2015 2:33 am

Hi,
I decided to go part time and whilst I've had a whole lot of other issues to contend with, which has made me rethink whether I can continue work at all, I definitely think part time helped improve my quality of life. I still contributed financially and I got out of the house, but more importantly I felt like a mum again. When I was working full time the only way I could get through the day was to put everything else aside which left me having no time to spend with the kids.
Don't worry about PIP. Although it can be hard to apply for (and I would definitely recommend seeking help), you are entitled to it regardless of your income. My hubby works full time and claims DLA and I work part time and receive enhanced PIP for both mobility and care. It's non means tested. I would get onto it as soon as you can as it took me a year to get it and was lucky enough to not have to go to appeal.
Good luck with what ever you decide.
Hannah x
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Re: Work, work, work.

Postby Bexter » Tue Jun 02, 2015 3:36 am

Lauren PIP is not means tested so it won't matter on how much income you get you are entitled to it if they except you.
The one tip my doctor gave me when filling the forms in was, you have to fill it in and explain and answer questions as it is on your worst day. My doctor and neuro consultant told me that.
I'm new to diagnosis but iv been suffering for along time with the symptoms. I thought it was all down to my Cauda Equina and dropped foot but when I was explaining to the doctor how my hands cramp into like a claw position and can stay that way for a good while and the pain in my shoulders and arms, I can't use my self propelling wheelchair much any more as its so painful so hopefully going to be getting an electric wheelchair so I can actually leave the bungalow on my own.
If ever your stuck for middle of the night chat I'm always awake if u want to chat.
As I said before good luck xx
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Re: Work, work, work.

Postby Puddlesplasher » Tue Jun 02, 2015 7:52 am

Hello, I am new to this forum (this is my first post)
I am recently diagnosed after a very bad flare up which left me unable to get out of bed with the pain and fatigue.
I work 30 hours a week in a high end supermarket and its a very full on physical job on my feet all day.
When I was diagnosed my GP said I would be best to give up work and concentrate on myself more at home.
But I loved my job and although I was suffering I wanted to hang on to it as long as possible.

So I got in touch with OH and explained the situation and they have all got together with managers and allowed me to cut my hours down dramatically. I feel I have been very lucky to have the support of my employer who wants me to stay in work as long as I can and is happy to do what they can do to make my working day as comfortable as possible.

My point is this, be honest with your employer and explain what you need to continue in work, the longer you can hang on to some form of independence the better, even if its just a few hours a week, the benefits can be great as your out and meeting people improving your self esteem.

I know there will come a day when I have to give up work but I will try to hang on as long as possible to what little of 'me' I still have.
Puddle :)
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Re: Work, work, work.

Postby Honeysmum » Tue Jun 02, 2015 5:23 pm

I was diagnosed In 2006 and had gone part time to try to keep working. Each job presented new problems and I left them for something else I thought I would be able to cope with but eventually gave up in June last year. I applied for PIP with my FM and Depression and had been warned that I would probably need to appeal but I was helped filling the form in by a guy I was referred to by my counsellor. He worked in Advocacy (?) not sure this is available everywhere but they seem to be like an extension of Citizens Advice/Local authority departments and I to my surprise and delight was accepted on standard rates for both parts.
I would recommend going part time and being able to work the hours will probably make you feel better in yourself than trying to stay full time and failing and feeling bad about it. Good luck. x
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Re: Work, work, work.

Postby Zia2014 » Wed Jun 03, 2015 12:08 pm

I went part time from full time and managed to actually have a life rather than just work and sleep. And as people have said you can apply for PIP. Please consider it as an option, because if you have already had two occasions in three months it seems clear that you are pushing yourself - and as a result you risk crashing and then you wouldn't even be at work!

I do think that although PIP can be a pita to apply for, it is designed for people who just can't work full time due to health. So might as well make the most of it...!
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Re: Work, work, work.

Postby bandj » Wed Jun 03, 2015 4:55 pm

Hi, I worked full time but cut my hours down a bit to help. I've got fm and other conditions plus I am hubby's sole carer as he's disabled. I then cut my hours down to 20. Now I'm signed of work due to the fm and work are considering ill health retirement.

Be honest and open with your employer and hopefully they will be able to help. Maybe they could change your duties or something. But you won't know until you ask! I really hope that work can sort things out with you.
There are these three things that remain: faith, hope and love. And the greatest of these is LOVE.
1 Corinthians 13:13
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Re: Work, work, work.

Postby LozBeanz » Tue Jun 09, 2015 2:45 pm

Thank you all so much for your replies, it has been really good to read what you all have to say and I feel i finally have a support network with the experience to help me. I will apply for PIP definitely now I know it can be successfully done with FM.

I have had a call from a doctor as work have been down the occupational therapy route with me. I have on record that they have said reducing my hours in the morning some days of the week would be beneficial and having a chair fitted to me personally has also been recommended. Hopefully they will listen but I have been noticing work using legal lingo more ie, being made to show they are making 'reasonable adjustment'. Considering I was told my doctor was 'talking out of their ***' a week ago and given a straight 'No - it's not your contract' when previously inquiring about reducing my hours slightly.

This makes me nervous about my current position in work, I very much feel like it is going against me personally being off ill (despite having a doctors note for the absences).

Anyway...rant over! I need to work towards getting my quality of life back and looking at the PIP route too.

Thank you all so much x
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