Giving up work

[Shann07]

Hi everyone, Ive finally decided to give up my job. Its such a sressful process but after been off sick for around 10 months I then returned for a few weeks. Definately wasnt a good idea I was so fatigued and stressed I had to go off again. I work in the nhs this past 20 years in admin Im 38 yrs. its not an easy decision but having been diagnosed 6 years now with lupus and lots of different complications its the sensible decision but a very stressful one. Just wondering if anyone here has been through the process, thanks.

[jvspeed]

Hi there

I had to give up work too for the same reason, Im 46 gave up work 3 years ago

[avionne]

Oh wow hun 2 years back when this disease was new to me i was actualky being encouraged to stop work by my doctors but i never gave up... i looked at work as being my go to place of escape. .normality at the time(that has changed now).. the point is every bodys are different.. i wish you all the best perhaps when you find a way to manage and its under control you can return to the working world

[Shann07 in reply to avionne]

Thank you avionne for your positive advice!

[misty14]

Hi Shann

Sorry to read you have made the tough decision to give up work because of your health. It must be stressful working in NHS admin and you might be able to do something different when your better.

You could go to your local Citizens Advice who would do a benefits check to see what help you could get now your circumstances are changing. They will also help you fill in the forms. They also have employment advisors who will help if you have any queries about stopping work, final settlements from your employer etc.

I hope your health improves. X

[Shann07 in reply to misty14]

Thanks Misty14 x

[Lupiknits]

So sorry about this. I, too, worked in the NHS and took early medical retirement. It was quite a shock. Make sure you ask for early medical retirement, as you may be able to access some pension from your contributions so far, I'm older than you, don't expect to work again, but you may find later that you can work again. x

[Shann07 in reply to Lupiknits]

Thank you 😊

[RhondaB]

Hello. I know how you feel. I had to stop working 5 yrs ago. I really didn't want to, I loved working but just couldn't do it any more. Ever since then been going crazy even to this day. Hope you don't go crazy like me.

[Nixta]

I gave up work about six months ago after stressing (making the Lupus worse) and worrying. It was the VERY BEST thing I ever did. Life has a marvellous way of working out. It all falls back into place - even finances have a way of sorting out. Ask for support from family if necessary, but you are doing the best you can for your health and if you have any hope of easing some of the symptoms. A stressful job like the NHS would just add to your illness. Good on you for taking the plunge - I promise you will not regret it. You will have time to look after your own health, gentle exercise and better diet.

All the very best in your new life chapter!! ENJOY every moment.

[Shann07 in reply to Nixta]

Thank you so much for your kind reply. It is stressful and sad in a way too although deep down since my diagnosis I knew I couldnt keep it up long term. Ive had a few complications with lupus this past couple of years to say the least i just find work too stressful now. Im looking into benefit I might be entitled to. Everything just a bit up in the air at the mo, but glad Im not returning to work x.

[Nixta in reply to Shann07]

You will have another new life - a new chapter and good things open up to you. Its amazing how things work out. Be easy on yourself - it is a tough transition but keep an open mind and working on relaxing and bringing positive energy to yourself and things will work out for you.

All the very best.

[creaky]

Hi shann,

I gave up my job as a deputy ward manager 2 years ago when I was diagnosed with SLE, at the same time as the sudden death of my mum.

I had had a diagnosis of inflammatory arthritis for some years and was on my second knee replacement, I had a huge flare due to the sudden stress of bereavement and was very unwell.

It was the right time for me to go, I was 50 and had planned to retire at 55 anyway. I got early retirement on medical grounds so was able to take my pension.

I miss work so much, it's hard because people tend to ask what you are doing now, and I have to say very little.

I have regular nights out with my ward team, and still feel part of it in a way, they are very good to me.

It was the right thing for me. Just trying to get to work every day was very stressful, and because I was given a modified role, I found under even more pressure to get there and make the most of it.

Good luck I hope that it works out for you. 🍀

[Shann07 in reply to creaky]

Thanks for your reply. Im glad it has worked out so well for you. Im 38 so not sure if I can access my pension due to early retirement? Ive worked 20 years in nhs. Going through the process now with HR & I really havent a clue about these things x.

[creaky in reply to Shann07]

Occ health, helped me sort it out, I also had support from Rcn, and a report from the rheumatologist.

HR were completely hopeless, they wanted me to come to formal meeting so they could dismiss me, I said what happens if I refuse, they I would be dismissed! 😂

It was a horrible stressful time, if wish you luck, hang in there, you will get there in the end.

[Lupiknits in reply to Shann07]

Make sure Occupational Health are involved. If you have a union rep, get hold of pension details unless HR are up to speed (my HR were not much good) . Where I was, it was occ health who made the final decision on whether it was medical, rather than just early, retirement. In my scheme I was given added years on my pension because it was a medical retirement.

Good luck. You will actually find it a relief, even if you hadn't planned for, or expected, it. x

[nurse_ratchet]

Hi there

I turn 43 this year.In late 2012 I had a bad flare that has been ongoing and difficult to get under control. I have not had more than 1-4 days of consecutive 'good days', trying all kinds of different meds and injections, on/off prednisone etc. I did try to go back on a gradual return to work for just under 6 months and totally failed -feeling worse than ever.I have been off on disability since June 2013 and have been told that I have 2 more months to decide if I am able to participate in a back to work program OR I will be given my walking papers.

Makes me sad as I don't know day to day how I am going to feel.I try to go with the flow. But I sure didnt plan on getting sick 10 years into a career that I sacrificed so much to get into.I went back to University as a single parent, finished a 4 yr degree in 3.5 yrs and never took a break so that I could provide for us. Thought I'd get more than 10 yrs! 😳Not ready to hang up my stethescope:/

Gen

[Wendy39]

Hello. I am 41 years old and currently working my notice period on my job. So can totally relate to your post.

I left my career job due to Lupus in 2009 I think it was. I was a personal injury lawyer and I had 3 children under 5. I had what I now know to be my first big lupus flare up. I was so depressed. And I was having a tough time in work with my boss. I was locking myself in the toilet at work and crying every day. I was having headaches (migarine that resulted in me grinding a tooth away in my sleep) was prescribed diazepam, and had sores on my head - sun sensitivity rash. But the lupus and flare went un-diagnosed by my GP. So I quit my job and decided to take a break, whilst the children were still young.

I then retrained after a 2 year break to be a Teaching Assistant. It was a lot less stressful then my previous job, fitted in with my family, school holidays off etc, especially as I have no regular free childcare and I really enjoyed it. However, this year I have had some really low moments in my health. I've had increasingly severe and scary migraines and bursitis in my hip requiring a steroid injection. I am currently coming to the end of a 5 week course of steroids with a view to going onto CellCept or some such immune suppressant. And 2 weeks ago I was told I have a syrinx cyst inside my spinal cord, so I am waiting to see a neurosurgeon. Might be lupus related - CNS involvement.

Basically the 2 x 200mg of hydroxychloroquine isn't working, the flares are getting worse and closer together and I am exhausted from fighting everything. My job steals all my energy, even though I only work 16.5 hours a week. I am useless when I get home. Mondays I nap for 2 hours when I get in. Then cook a meal and go back to bed. Tuesday I have an hour nap. Wednesday I finish at midday and go home to bed, until I have to collect the kids from school. Thursday and Friday I am off, so can pace myself. But I usually nap Saturdays and Sundays too. My husband and my kids miss me. They need more of me. So work is going. Family and health have to come first for me now.

(I am currently funding the steroids - 5 weeks - a great help though. Dreading coming off them and going back to my useless self).

Come September when the kids go back to school, I am sure that it will seem very strange not going into my classroom and meeting the new class. But I know that it is the right decision for me and my family right now. I guess I can always go back at some point in the future if things improve for me. But I am looking forward to not having to work for the time being.

Lupus forces you to make tough decisions doesn't it? I wish you well.

[Shann07 in reply to Wendy39]

Hi Wendy. Gosh you have been through alot health wise with lupus too. I feel exactly like you say Im kind of forced into giving up because of a mix of things i recently had a clot in my lung which has failed to dissolve so its there chronically & Im now on warfarin lifelong. Ive had lots of different complications with lupus, MCTD, APS etc. Im definately looking forward to the rest but its stressful retiring or resigning i really dont know which road is for me at the mo until i take some direction from occ health. I started on azathioprine a few months back & it has helped my symptoms brillant as before i could barely get around, downside being that im now on a 3 month course of antibiotics as my white cells are so low on the drug! Its never straight forward is it. Thanks for sharing your story with me and I wish you health and happiness x.

[Shann07 in reply to Wendy39]

Just to add, your working week is exactly what mine is like. I work 18 hrs & that sucked all my energy plus I have 2 children & hubby! I was on hydroxy only too for 5 years, im diagnosed 6 years, & it was totally hopeless, however rheummy was so reluctant to start me on anything stronger because even though i couldnt move my blood work was never that bad. Had bad flare 6 months ago & started azathioprine & much better. I hope cellcept works as well for you I know others who take it & it works really well. Poor you with all lupus symptoms & cyst on your spine that sounds awful I hope your treated soon & all turns out good. Its such a rollercoaster isnt it up & down all the time. I get great support from this forum though as everyone totally understands how it feels. Take care x