Nurses with Lupus

[charlie007]

I work part-time I find it difficult because I feel so tired all the time,I just wonder how other people cope or do they give up work ?

[Jaxqueline]

It's a tricky one, I went to part time but am finding that difficult and have had a lot of time off and am currently on a disciplinary action plan because of the time off. I guess my only advice would be is to manage your time as well as you can and make the most of your time off resting. Also ask for help whenever you can. Sorry I can't be of any more help.

[IMillar]

I have been working part time (21 hrs) which is 3 days a week until last November when I ended up in hospital with a bad UTI. I had been struggling at work anyway, had a lot of time off and I was referred to occ health. To cut a long story short I was offered early retirement on medical grounds and have received the upper tier pension. In the end I was worried I might make a serious mistake at work and it was just too much. I am still young(ish) but I feel I did the right thing now.

[lupie-Cathy]

I had to give up I just couldn't cope with it all, used to work in ITU and just burned out in the end, went on to recovery and did very part-time then we moved and I went back to bank work but when we moved again it was 30 miles to the nearest hospital so gave up nursing, I worked for a while as a bank co-ordinator for an alzheimers group but then I hurt my shoulder and had to give that up too, I don't think I could work now, just can't battle the fatigue some days and couldn't say from 1 hour to the next whether I could work if anyone asked me too! I would say be truthful to your managers and explain the nature of the illness and ask for some slack! Maybe even drop your hours further or go on the bank instead? I wish you luck whatever

[Maureenpearl]

I was so tired every day and had to close my eyes every chance I got. I was working part time up to 2007 when I had a big flare and had to be hospitalized and I never went back to work. I have since had my pension on ill health grounds.

[Sue2803]

I carried on working as a nurse for 12 years since diagnosis, but the last year has just been too hard, increased workload and pressure etc. I cannot afford to go part time, as I live on my own with no partner so would get no help with rent etc. So I made the decision to go for ill health retirement, apart from the fact that even if I went part time, I am quite unreliable as I never know from one day to the next how I am gonna feel. Been off now for 3months and must say I do feel better for not working, easier to cope with the tiredness etc. cos I can just sit down and have an easy day if I dont feel too good and have too few spoons.

[Diane48 in reply to Sue2803]

I work as a nurses aide and finding it more and more diffucult to work i put my all in it at work to take care of my residents but by the end of the day i am so sore and stiff and really tired i can not find the extra engery to do what i need to do at home and i so hate these feelings.somedays i feel like the people i take care of. and i also need to work but do not know how much longer i am going to be able to.

[Kirsty2510]

Hello

I have been off work since last September. I really thought I would have been back by now but have been in hospital four times already this year. Last year my GP warned me he didn't think I would be fit for my post again but I always thought I would manage . Last week my consultant agreed I probably would not manage this post again. I am really upset and can only hope I could try something less demanding part time eventually as the thought of never working again is awful. I think guilt plays a big part in nurse's emotions when it comes to sick leave and I really struggle with this.

[tulip47]

Hello there, I too have had to take medical retirement.....The overwhelming tiredness that is so hard to explain to colleagues (who think you are having lazy days), and knowing that you are just unable to function properly, it came as a relief not to have that battle with yourself everyday. But do miss the life so much..........

I wish you well whatever you do, my thoughts are with you xx

[Hidden]

Tried to carry on nursing but it was too hard I got fatigue and memory problems they tried didn't grant me ill health retirement either due to the fact we didn't know it was Lupus. But haven't worked since.

Good luck. I do know another nurse who has be deployed to a quieter area and cut hrs has a supportive husband and got access to work to pay for some adaptations. So carried on working.

[kimberleyc]

Tough call that one. Im also a nurse working full time. When well I love my job and cope well ( sometimes even feel like SLE has gone away) Then its like being hit by a frieght train. The fatigue and muscle aches are the pits and with it follows the depression. I often consider giving up work but then I know when well I would really regret my decision. I love my job but sometimes its so so so hard

[charlie007]

Thanks so much for all the replies,its so true about the guilt you feel being off sick,and the work has become more demanding,the comments have been very helpful.

[Paty]

I was diagnosed with SLE in 2001 but by the begining of 2002 I was so ill (hospitalised for 7 weeks) and unfortunately have not been able to work since.

I miss work so much,not just the money but being able to do for others,which I now have to have done for me(I have a carer) I don't like saying I WAS a Nurse as I wish I STILL was! Incidently I did lots of night shifts and day/eve shifts squeezed inbetween,this I believe has harmed my immune system.

[charlie007 in reply to Paty]

Thanks so much for your reply.I feel the pace of work .along with the stress of it wears me out,I was always someone that coped well with stress,my family would have said I don't let things get to me,but I have noticed now that I don't cope so well at all.I know I need to make important decisions !