What to do about Work

[Tash1987]

I’m a single mother to two kids a boy of 8 and a girl of 3 who are very very active , plus also I work in a children centre full time 5 days a week , my job makes me very fatigued in the evenings which doesn’t help having the children as I’m on the go till at least 9pm and I’m up at 6:15, making time for myself and the illness is very hard and very stressful which results in mood swings. My work place don’t understand this and load me up with Work, I’m thinking of going part time and maybe a change career to make more time for myself and kids and to enjoy my life, has anybody experienced Work issues due their lupus ???

[MEW53]

Tash1987,

Sounds like you are burning the candle at both ends. It may be worth having a word with your GP to see if he can help. I haven’t been able to work with Scleroderma for 3 years so I went on long term sick leave, I’m retiring now. There may be some options out there for you. Have a look at the citizens advice bureau for help, government web site any be useful too.

Good luck don’t overdo it.

[Tash1987 in reply to MEW53]

Thank you very much, I did make an appointment with my Gp, she gave me some advice of places to go for advice, I’m just so confuse, I wish they was help out there for people who have lupus and working, because it’s so hard

[whisperit]

Hello Tash,

Have you seen the LupusUK booklet about support for continuing to work with SLE? lupusuk.org.uk/wp-content/u...

When I fell ill, I was working at 3 part-time jobs, and really enjoying it. At the same time, I was still parenting my daughter. Obviously, the top priority was always to make sure I had enough time and energy to be a good Dad to her, and so the jobs had to go, one after the other, as I found it increasingly difficult to keep all the plates spinning.

I guess there's no one answer - we are all different people, in different situations. But aren't you at quite an early stage of dealing with your diagnosis and treatment? Do try to take it easy on the work side of things and speak to your employer about what you need to stay healthy and productive x

[GlasgowHen]

Hi tash, I'm also a single mum to 3 children although the eldest is away from home. The 2 younger ones are 11 and 8 but both with disabilities so like having much younger children about. I work but I just couldn't manage the full time so I cut my hours down to 30 hours but do it over 5 days so I am just working school hours. During the holidays I will work 4 longer days to give me 3 days off with them. However I find that very tiring, by 2 pm I just can't concentrate anymore. This has given me a bit more time with them and to sort of relax after work. I'm a very early riser and view the morning hours as time for me. I go to bed not long after the children, I can't work and have a social life I'm afraid,I just don't have the energy. I have made sure during the week the children are in a really good routine and this has helped them help themselves a bit more, I also bulk cook on weekends so when I'm too tired I have stock of stuff to feed them. I don't beat myself up if they end up with sandwiches and crisps every so often when I am just too tired.

I've changed things round to make sure we are not out on both Saturday and Sunday and have maybe a morning out and the afternoon doing quieter things like watching a movie or doing a craft activity.

Would you employer look at flexible working or a reduction in hours considering lupus comes under the disability act? Tax credits go up if you are working 30 hours only so this may fill the financial gap. I didn't find it excessively different when I dropped my hours to be honest income wise. I am very fortunate that my manager has been extremely supportive. When I was first diagnosed and really not very well I explained to her all my symptoms and how they were impacting on me. She was great in saying if I felt so tired then I could just go home with no explanation needed. I only did this a few times but I really appreciated it and it took the pressure off when I just couldn't manage. Lupus uk have a few publications that you can give your manager to help them understand.

I really do understand how tough it can be trying to juggle work and being a mum,especially when single. Do you get a little break from the children at all? Also worth taking up anyone who offers to give you a bit of some breathing space and help out

[Tash1987]

Hi thanks for replying back, great things you are doing, I like the idea of the bulk cooking that would make life so easy, I normally put my kids to bed at 8, but I find it very hard to fall asleep, I only get 6 hours sleep a night if lucky maybe 7, when it comes to work my job is term time , so I do get a lot of time off , but whiles working I’m so tired etc, because I looking after other kids, my manager is ok she understands but the owners are very hard headed, so I think I might do 16 hours, but I will see how it will affect my wages and lifestyles, I do get space from my kids sometimes when they dad decides and having them for the weekend, but when they are away I’m finding my self catching up on house work. No rest

[Buffy14]

If you are disabled you should get tax credits if you work 16 hours or more , lupus is recognized as a disability in employment law I don't know if that's enough to get tax credits I think you have to be registered disabled to get the tax credits at 16 hours but how you go about that I'm not sure I don't think there's anything in place now to get registered so maybe they just accept a letter from your doctor , maybe someone else on here could advise about that , if you receive DLA or pip then you would automatically qualify for tax credits working 16 hours I believe . You can get leaflets from here to give to your employer to help them understand the condition .

[Curly1430 in reply to Buffy14]

Tash there is a lady on here from lupus society and she deals with this stuff for you it’s her specialty x

[Curly1430 in reply to Curly1430]

Tash I found her she is gona mail you I hope you don’t mind x

[Sara_A]

Yes, I’ve not been able to work full time since my early 20’s am now 38.

So even when I was single I could t manage it. I’m a nurse and went from working in children’s a&e to 3 days a wk in an outpatient unit.

I have since had children now aged 5y and 2y. I work 2 days a week now in a gp surgery.

So yes I’ve had alter my career/work life according to my health and fatigue.

It’s rubbish and frustrating but I just couldn’t carry on like that. I do feel like I have had my career snatched away from me by this awful illness but what else can we do.

Luckily my partner also has a well paid job and I still take a very good monthly wage for just 2 days work.

I really don’t know how on earth u are managing working 5 days and bring a single parent!!

The thought of having to work 5 days just makes me want to collapse!

I’m sorry ur work aren’t understanding, is there an occupational health dept u can go to with work as they may be able to help by making recommendations to ur employer. Also does ur employer know much about ur condition? They need to by law make reasonable adjustments for under disability discrimination.

You def need totes make some changes for the sake of urs and ur children’s quality of life. I used to get dla back in my 20’s to help as I could only work 2-3 days because of my health.

Sorry it’s a long reply!!

Sara

[Tash1987 in reply to Sara_A]

At leat you replied thank you

[Wendy39 in reply to Sara_A]

Just posted a link to your own post, Sara_A as these were so similar. x

[Kevin53]

Lots of great advice and support. Please ring Lupus UK. Best wishes Kevin

[Tash1987 in reply to Kevin53]

Thank you I will, on Monday since I’ve been sign off another week from work I might as well be practical with my time.

[Treading_carefully]

Hi Tash it sounds like exhaustingly hard work even for a 100% well person. I've been off work since mid Feb. I have asked to reduce to 2days a week in the hope that I will be better at being there for my son. I really struggled to get to the point where I asked to reduce my hours. I felt liked I had failed, i guess I still have a little trouble accepting it will be like this forever. My work still haven't agreed to my terms yet so will just have to wait and see.

Couple of things have helped me; asking my folks to help me out more with my son. Explaining to my son he will get rewards if he helps me help him (doesn't always work!) I am fortunate to have my husband who has a reasonable paid job and works shifts so is available for pick up from school at times. I have also spoken to other parents at the school and made them aware of what happens for me at times. They have offered to have my son or drive him to parties or events. Which is most helpful and kind. He really struggles to sleep so I don't care that my house isn't tidy anymore I just prepare his lunch for the next day (hopefully with his help) and we put the dogs to bed then go up to bed together. I use a slow cooker for ease and this has helped me with my fatigue in the evenings. Just takes a bit of planning.

Sorry for the ramble- Hope a wee bit helped 🤔😉

Your doing great x

[Tash1987 in reply to Treading_carefully]

Thank you for replying, I do also feel like a failure If I reduced my hours, but I need to remember I need to be good for my kids , I also have issue with mess, I can’t leave the house messy , it drives me mad, always cleaning up after my kids , I’m teaching my son to start tidying up after himself. It’s going to take a while got me to mentally accept I won’t be the same tash again, thanks again for ya reply it does help

[Curly1430 in reply to Tash1987]

Never feel like your a failure tash someone who is perfectly healthy wud struggle doing what you do work five days two kids on your own house to look after in my eyes your a bloody star I struggle looking after myself lol 😂 so no more saying ur a failure please xx

[Tash1987 in reply to Curly1430]

😊😊😊 thank you

[Wendy39]

Hello

I responded to a very similar post a couple of days ago.

I have three children, now aged 14, 12 & 10 and no longer work. I was diagnosed just over 4 years ago but think mine was really set off by the birth of my youngest, just didn't get diagnosed straight away.

I'll post the link here for you to read.

It was posted by Sara_A .

I think all of us who have children and/or work have struggled to get the right work/life/family balance at various times. It's almost impossible really but we beat ourselves up about it. Being a parent means feeling guilty about one thing or another for the rest of our lives anyway, right, without a chronic illness thrown into the equation.

I had terrible mood swings before diagnosis and meds. Looking back makes me fell so sad, at the times I shouted at my children for silly things. But I had no idea what was going on with me. Thought it was just hormones and having 3 children etc.

You aren't alone with all of this.

Do you think your meds are working for you? Are you flaring at the moment and so feel you are struggling more? Do you get help with your children from any family?

Hope this link helps.

healthunlocked.com/lupusuk/...

Best wishes.

Wendy

[Tash1987 in reply to Wendy39]

Thank you Wendy, my mood swings are so bad, shouting at my kids for silly reason, just being grumpy

[Wendy39 in reply to Tash1987]

I get it, I really do. But I am lucky that my husband is really understanding and supportive. I can't imagine doing this as a single parent, that's a totally different ball game. I know it's a bit personal and tell me to mind my own business, but is your children's Dad still on the scene to help out? Or do you have family who could give you one night off a week, so you can get an early night for example?

Take a look at that link because I gave quite a full response and there are some other helpful replies too.

Wendy x

[Tash1987 in reply to Wendy39]

The kids dad are meant to have them in the weekend, it he doesn’t always keep to it, so annoying, I’m going to have a read now

[johare]

Oh yes I think you will find many people here who have felt the way you do, including me. I loved my job, my children my life but I was burning out and my illness was progressing at a furious rate. I did ignore it until I had to take ill health retirement.

Take note now. I think a review of your situation is the best idea. As been said there are leaflets on this site that can help. also reduced hours can be supplemented. You may find this may be until your children are alittle older, your condition settles, or you could work with older children etc.

A supportive letter from your gp to your employer may help you.

All the best.

[Chanpreet_Walia LUPUS UK]

Hi Tash1987,

If you need information about lupus and employment, including information about your rights and what support services are available, we have two booklets that you can read and download at lupusuk.org.uk/working-with....

If you need physical copies of these booklets sent to you, please email me at [e-mail] with your name and address.

Fatigue is one of the most common symptoms of lupus; it affects around 90% of lupus patients. We published an article on our blog about 'managing fatigue' which contains helpful tips and information which you can read here lupusuk.org.uk/managing-fat...

[Curly1430 in reply to Chanpreet_Walia]

Thank you chanpreet for reaching out to her we all need to look out for one another it’s good to care x

[LH44]

I'm wondering & worrying about work, I've been off so long (years) I think they're about to sack me. I've always worked & was saving to buy a house until I got ill. Now I have over the savings limit for benefits, something I never thought I'd ever have to claim so I don't know what I'm going to do.

[Curly1430 in reply to LH44]

There is a nice lady on this blog called chanpreet send her a msg I don’t think they can get away with just sacking you be quick with this no time to waste LH44 yours curly

[LH44 in reply to Curly1430]

Thanks Curly, I've been off too long & I know my job can't stay open forever, they're a business not a charity which I understand. I have a big problem with my eyes which stops me doing most things so as far as I understand it, if I can't do my job I will be dismissed!

[Curly1430 in reply to LH44]

Still worth getting we bit of advice does no harm it is a hard thing to come to terms with I was in same position as you 4 years ago I took it hard iv worked since I was 15 felt worths after it first time signing on and was made to feel like shite sorry this doesn’t help me moaning lol 😂 I hope your ok is it your sight x

[LH44 in reply to Curly1430]

Exactly what's happening to me & never thought it would happen to me! Yes I'll defo get some advice, for employment ACAS has been suggested. Moan away, that's some of the reason we're all here!