Struggling with work

[LuckyJC]

How do you all decide when you need to either take a break from work or give it up completely?

I am really struggling at the moment - constantly exhausted and joint pain all over, numb legs and hand, headaches, and now my memory/thinking seems to be impaired too. I'm making loads of stupid mistakes at work which I'm really embarrassed about, plus taking about one day a week off for medical tests and appointments. I've only been in the job 3 months...

How did others decide that they couldn't do it anymore? Did you wait til your work pushed you, or did you quit before it got to that stage?

I realise of course lots of people keep working because financially they have no choice (I'm in that position), but equally I see lots of people have given up work because they physically can't do it anymore (think that's where I'm headed)..

Just want to know how others have coped with this dilemma? Have you been supported by a partner, moved in with parents, downsized house etc?

Thanks in advance X

[sabine]

Hi, I had to give up work 5 years ago even from temp work and it wasn't an easy decision, in the long run it was the best thing I did, gave me time to reevaluate my work options and where I am going work wise. Supported very much by partner. Have worked successfully in voluntary work for 2 1/2 years and gone in a different direction that takes into account my medical condition (came out of admin work). Applied for all benefits I was due to and cut my cloth according! Now lupus is in remission and I feel better about life. Good luck with your descision.

[Sami1982]

I started my new job 6 months ago and I've been off 3 times already the later has been for 5 weeks so far. Before I was diagnosed with Lupus I worked 40+ hours a week in recruitment I left that job due to moving county to be close to family as I was expecting my first child, I couldn't return to that job due to the relocation and now I can't seem to stack shelves or stand a serve customers. My GP agreed to me having time off as I've started methotrexate and its knocking me for 7 to say the least. I'm due back to work on the 23rd after seeing my specialist but if I feel like I do now I worry I won't be able to cope. I have been told this kind of job isn't really suited to my illness and to consider an office job but that's also easier said than done. My memory like you isn't like it was, my eyes struggle to focus on computer screens and I worry like you how this is going to work out financially. I don't get sick pay so in own ESA which I find really embarrassing as ive ever been on benefits I've always worked and I worry that this I snow my life and I'd do anything to just be able to work again. The up side is u get to spend all day everyday with my son it on ad days I feel like I let him down as a simple trip to the park can write me off for days to follow. Not much help or advice here but we share the same boat x

[Marrie09]

Dear LuckyJC, I absolutely love to work and am ambitious too. I've had SLE and Sjögren's the past 23 years. Five years ago I decided I was fed up with being an unreliable colleague, always feeling guilty about not being able to be there all the time and perform a 100%. I then decided I needed a career switch. I got my bachelor's degree as a translator and started my own business. That was the best decision ever. I work as soon as I feel (moderately) OK and when I have inflammations or feel very tired and not able to meet deadlines I have other translators who can take over temporarily without my clients even knowing. When I feel great I still make the mistake of taking on too much work. And when I feel like shit, the most simple chores take forever. I do not want to be defined or confined by SLE/Sjögren, but you need to make things work for you. I surely envisioned myself to have a different career, but this way I can still enjoy work and stay independent. For me it is really important that life is centered mainly around other things than just SLE/Sjögren.

[Paul_Howard Partner LUPUS UK]

Hi LuckyJC ,

Have you discussed your difficulty at work with your consultant? Do they feel that you lupus is currently as well controlled as it can be with treatment, or are they still making adjustments to try and improve it?

Are your employers aware of your lupus? Have they made any adjustments to help you manage better in your current role?

We have a couple of booklets about lupus and work which you may find helpful. You can view and download them on our website at lupusuk.org.uk/working-with...

If you require physical copies, just send me a private message or email [e-mail] with your name and address.

[creaky]

Hello,

I gave up work over two years ago now, had had time off for my first knee replacement, as a mental health nurse deputy manager I arranged to return to work in a modified role, I had just started this when in the same week mum died very suddenly and I received my lupus diagnosis.

I guess all the stress caused a huge flare up and I was very sick.

I went to see the occupational health doctor who asked if I knew that I would be able to take early retirement on grounds Ill health.

My consultant supported this and I had the write to say why I felt that I couldn't work in any role at my grade.

It was a harrowing time and not a decision I took lightly, after 30 years of nursing.

I am very lucky that I was able to the my pension, I do not get any benefits, we have less money than we did, but you get used to that.

I miss work every day, my former colleagues are very good to me and include me in may social events.

My advice is to take your time and think carefully, the advice and talk to your employer.

For me the stress of getting myself to work each day was making me worse and it was a relief not to feel like I was letting my team down.

I hope you are able to work what is right for you, wishing you the best possible health. 🍀 🍀 🍀

Helen

[misty14]

Hi luckyjc

Sorry to read you are struggling to cope with your health and work. It's a really tough illness to deal with because of its unpredictability. My advice to you would be before you make the big decision to give up work, go to Citizens advice . They can run a benefits check to see all the help you could get if you gave up work and would help you fill in the forms. They also have employment advisors who would ensure you were paid up properly until you left . If you had any questions or problems , they could help you.

I hope it doesn't come to that and just having a break will help if you need time for treatment to work better?. All the best with it all and keep us posted. X

[whisperit]

Thanks for this post. I find myself in a similar position.

A year ago, I was working at two 1/2 time jobs, and I've now have had to give one up completely. In the other job, my sick pay is about to be halved, so I face either having to remain on their payroll, but on an income that's been slashed to a quarter of what it was a year ago, or else apply for retirement.

The trouble is that, since I am quite newly diagnosed, my consultants can't give me any idea of how far I might recover, or on what kind of timescale.

As if the illness itself wasn't enough to worry about!

I hope you can post updates about how things are going for you

x

[Wendy39]

Hello LuckyJC.

I read your post and related to it immediately.

I was diagnosed with SCLE in November 2013. But looking back with the benefit of hindsight, I think I had symptoms from the birth of my 3rd child in January 2008. At that time I was working for a local solicitor as a Personal Injury Lawyer and been there for over 10 years. I loved the job. But I realise now that I had depression and anxiety. I also had sores on my head and other lupus symptoms, including increasing photo sensitivity. But at the time I just thought having 3 children very close together and working in a stressful job was too much for me. My boss wasn't being very nice to me and I was finding myself locked in the toilet crying at least once a day in work. My husband and I chatted and decided I would give it up and be a full-time Mum for a while. Like I say, the Lupus went un-diagnosed for sometime then.

When my 3rd child started school, I started work in the local junior school and retrained as a Teaching Assistant. I loved it. And it fitted in with the children school day and I had school holidays off with them. It was perfect. But again, the lupus got the better of me. By Spring this year, I was heading down hill again. The hydroxy wasn't doing enough. The fatigue was awful. I had a really bad spell with symptoms and flares. We had a redundancy situation and I took it. It wasn't much - as a TA the salary is terrible and I had only been there 4 years. But it wasn't about the money for me. It was a get out. With 3 children, now aged 8,11 and 12, I just wasn't able to give them and my husband what they needed from me. I was working 2.5 days a week and struggling with that. I would come home from work and go to bed for 1.5/2 hours, leaving the children to their own devices. I would then get up, cook something quick, tidy up and go back to bed, exhausted. I was tired, stressed and emotional a lot of the time. I had no patience with the children and would shout quite a lot! Then, you feel so guilty, as a mum and a wife. So again, my husband and I decided now is the time to quit and get myself back on track - if you know what I mean.

The children have returned to school and it does feel weird not being there - in the classroom and doing my job. But more so, I feel a massive sense of relief. I am much more relaxed - so far. I hope that this feeling of less pressure will help my health. Also, luckily for me I found a Dermatologist who has given me 2 courses of steroids this summer, which has made a massive difference to me and put me on a compete immune suppressant. So fingers crossed this will help me feel better.

It is so difficult to admit that you cannot be the same person any more, that you cannot do the same things. Your career is part of your identity. It's unnerving to think about giving it up. I have always been a strong, independant and hard working person. And sometimes I feel like a failure. My friends (I am 42 now), all have their children in full time education and are increasing their hours at work and pushing their careers forward again. Whilst I am now at home full time. But hey ho. I cannot change it. I have lupus. (And I also have osteoarthritis hips, knees and back, allergies, a syrinx cyst on my spine, varicose veins, possible slight vasculitis). I am doing the best I can for myself and I know it is right for my family too.

Just discuss this with your friends and family, take your time but ultimately, you have to do what is right for you and only you know what the right thing is.

Best wishes.

Wendy

[LReed]

I have read this string a couple of times and found it helpful. Having had to give up work as a teacher recently before receiving my mctd diagnosis I can particularly relate to Wendy's post. I am dithering about returning to work as the hydroxychloroquine has not yet had a chance to kick in and I don't want to make myself worse again. I am a hard worker and ambitious and it is hard not to compare ourselves to others but thank you all for helping me come to terms with the fact that I have to live with the Disease and make the most of the energy I have.