Got SLE and Fibro really struggling to work, what do I do?

[Stacy2310]

Hi all, I've had SLE for 12years, I'm 29. Recently been diagnosed with fibromyalgia. I've been signed off work for 5 weeks now and I'm struggling like crazy to get back there. Works not being great, they are moaning and I think they think I'm being lazy. I just don't know what to do, I need the money from working and I do like to work but its just becoming so hard, I only do three days. Any advice?x

[roobarb]

I know how you feel Stacy. I've got SLE & fibro too. Carrying on working has been a real struggle. Do you do full days? I found that spreading my hours out over the week in half days helped a lot. Obviously you need a supportive employer to be able to do this. Have you been able to give them any information leaflets from Lupus UK, so they can understand how these illnesses effect you?

Oh & napping in the afternoon or early evenings, is a must too if fatigue is a big problem.

If you are flaring you really need to rest & try not too worry. But I know this is easier said than done. Things will get better, as I'm sure you know if you've had lupus for 12 years. It's a fluctuating illness, so you need to learn to 'ride the storm' & 'dance in the rain' when things get tough. But most of all keep believing that better days are just round the corner.

Big hugs. X

[Stacy2310]

I work in a school so half days isn't really an option. My employers are ok, but I feel the higher staff are getting snotty.

Where would I get these leaflets? Thing is because I look semi ok, they just don't get it.

I have been fine with my lupus until the last 3 years and this flare just won't get unde control. I have an ill daughter to look after who had a heart transplant all due to my stupid lupus as well. I have a supportive other half but he obviously works so is nt here all the time.

Sorry for the moan I'm just majorly hating the illness at the moment x

[roobarb in reply to Stacy2310]

The fact that you work in a school should be to your benefit, as they have got to do everything by the book. They should accommodate you to do half days, if this is what your illness requires. You could jobshare with someone who could do the other half, like I do.

You say you only do 3 days, but that is way out of my league. I only to 2 afternoons now, & I don't have a family to look after, but I figure it's better than nothing. If & when I can do more, I will. Please don't feel guilty that you can't do more, lupus thrives on this.

How about asking them for a trail run, to see if half days help you. I know it's difficult to approach your employers with this. But it's your health at the end of the day, & if you run yourself into the ground now, you won't be able to work at all, or look after your daughter. The stress of all this could contribute to making your illness worse.

Leaflets can be downloaded from the lupus UK website. Or give head office a ring, someone there will provide you with the best info for your situation.

Another thought is, could you claim benefits for looking after your daughter? I have heard this mentioned before. Citizens advice might be a good port of call.

I truly hope you can get something sorted to help you cope with your illness. X

[hippo_dignity]

Hi Stacy,

I had this problem too, luckily my employers were really understanding and helped me out the best they could. I started working from home where possible but in the end I had to quit because I just couldn't do it. Now I have a job working from home entirely.

I know Lupus UK give out a whole bunch of literature and stuff for October (awareness month), it's worth seeing if you can order it this early because it's free lupusuk.org.uk/images/pdf/p.... or just try emailing the address and asking, I'm sure they'll help.

Have you sat down with occupational health to discuss ways they can make working easier for you?

I definitely feel for you, I know how hard it can be to work when your body really isn't up to it. Especially when you really WANT to work.

I hope things start to get a little easier soon xx

[bam1993]

I know what you are going through having the same problem myself-are you in a Union?? Lupus and Fibro are covered under the Disability Act 2010- and they have to give you some lee way-my firm are being quite good at the moment-I am on reduced hours at the moment(also reduced money!!not easy in these austere times!!)-but I know this cannot continue forever-as I am a Union Rep I am going to make sure that they follow the law-but I am still worried that they could get me for 'capability', as my job is Very phyiscal and I know I would not be able to complete a 12hr day now or ever-but they do have a duty to try to find me something else within the company, and I am desperate to keep working-I feel it would be like 'throwing in the towel' if I have to give up work!! If you are not in a Union make sure you either visit the CAB-also ACAS will give good unbiased information. Good luck

[LottaTee]

I have SLE. Cutaneous lupus. Fibromyalgia. Raynauds. I have 2 children and a single mum with minimal to no support. I work 33 hours a week. Work refered me to occupational health as they thought I was faking my illness. The therapist told them I would benefit from home working. My gp said the same. They refused. Employers are a battle especially as we look somewhat normal with no limbs hanging off people assume ur ok and when u say ur tired think ur lazy or a skiver. Sick or not I drag myself into work. I'll cry and/or sleep in meeting rooms or toilet. I have no choice. I can't risk going on benefits the whole disability system is messed up. I have to keep a roof over our heads and food on the table.

In an ideal world we'd all have supportive employers but we don't. Either u go back to work or you stay at home on benefits.

In these times employers don't really care about your well being. They just want the job done. Either by you or someone else.

You should look about reducing your hours or leaving work all together.

If the job is physical how much will u get done with fibromyalgia. Sorry I'm all doom and gloom.

L x

[Shann07]

I am in the same situation myself, Im on sick leave now 2 weeks and getting another 3 weeks from gp because i think im having a flare. Im diagnosed 2 years sle, aps, raynards, sigroens, ctd, & restrictive lung disease. I worked fulltime then when i got ill was off work for 10 months and employers referrred me to occupational health. They were very supportive and i reduced my hours to 18 hrs per week, which if im honest i still struggle with. I am worried now that im off sick again while they have accomodated my health issues with less hours will they say - this ones no good to us! Its soooooo tough mortgage to pay 2 kids to support, yes i have a working husband but hes only just started new job having been made redundant last year! I would love to give up work but so scared of benefits system at the mo! But in reality if health forces me not to work will i will have to accept that, i want to fight this disease and as my consultant tells me you have to respect this illness if you dont it will take you x.

[JJKANE in reply to Shann07]

I think the best thing to do is be honest with yourself first .. I have fibro SLE and ME and it's not being lazy these conditions are a thief of life.

I have been bed bound for 18 months because I would not give in . I have a son and although I live under the same roof a useless separated husband who has never worked and and made me so ill as well I left for 8 months so I could get some peace . I have since come back for my son sake and the social security can come and interview me in bed as I can not and will not go to them . I have a very supportive GP . Please tell where the good days are and around which corner as I may have one good half day every now and then .... Does that mean I can work NO it does not !!!

So let's get real . These conditions are cruel, and debilitating and I think the powers that be need more education in what it's like to live with every day !!

JJ