to work or not to work dilemma!

[Belee]

Hi all,

Since I've been diagnosed (3 years ago) I've been helping my husband with his business which has been perfect as I can work from home so even if I'm not feeling too great I can still help him out. I also look after our 3 kids , taking to after school clubs etc and take care of all the household chores.

A few weeks ago, we were discussing the possibility of moving house but to do that I'd need to go back into work which would help us get a bigger mortgage. At the time I was feeling ok so it seemed like a good idea. Managed to get myself a job which starts tomorrow (community nursing with elderly) but the problem now is that I'm feeling really terrible. (Achey, fluey, not sleeping, coughing, malar rash etc) I think I'm in a flare ( am seeing rheumy today so she'll be able to confirm that) and I'm beginning to wonder whether going back to work is a good idea, are the hours going to make me feel iller (work is 7am -2pm, 5 days a week, every other w/end). I like the fact that I'll feel like I'm contributing financially and not being a burden on my husband but really hate feeling so poorly. I can see the kids really worrying about me when I'm feeling poorly and hate putting them through that. They even said this morning that they'd rather me be well than have more money! Don't want to start the job tomorrow if I'm not going to be able to continue but also don't want to be using my lupus as an excuse!

How does everyone else manage?? advice much appreciated.

thankyou xxx

[misty14]

Hi Belee

Huge dilemma you have trying to juggle health, household and family life. It's tough also as having a job does wonders for self esteem if you can manage it but stress can be such a trigger for Lupus it's hard to know what to do isn't it?.

Your kids have already said they'd prefer you well than more money etc which is lovely!.

Have you been to the CAB?. They could look at your finances and see if there are benefits you could claim and would help you fill the forms in. Do you get DLA/Pip?.

Good luck when you see your Rheumy, that could help you decide. X

[Belee in reply to misty14]

Thanks misty14,

Rheumy did confirm that I'm flaring and need to change my meds. Also had to have chest xray to check my lungs. Feeling just a little fed up right now!

Decision made - Job will just have to wait. Family and myself must come first !!

xxx

[misty14 in reply to Belee]

Hi Belee

You've made the right decision, good your workplace will keep the job open for you for three weeks. Hope your new treatment works well and you can try. Keep us postedX

[Belee in reply to misty14]

Thanks misty14. Yes, definitely made the right decision as I'm feeling like poo! Will be going back to bed once the kids have gone to school! So lucky to have such a supportive husband . xxx

Hope you are feeling well at the moment xxx

[misty14 in reply to Belee]

Hi Belee

Hope you feel better soon. What treatment are you on?. Can you take extra steroids for the flare?. I'm flaring after having the flu jab so be careful when you have yours. I find extra steroids do help. Take Care. X

[Whathappned]

Hi

It sound hard work 7am - 2pm, 5 days a week. I can only manage 22 - 25 hrs a week and it's less physical role in nursing.

We extended our house just before my symptoms really showed themselves and on hind sight I wonder if it was really worth it. I actually have more to clean and not the energy.

Plus like you say the mortgage needs paying and I have to work now, whereas before I might of had a choice.

The other problem is if your in a flare do you think you will manage, don't make your self worse.

I think it's hard advising as it's very individual and I've learnt how to gauge my body for work. I can push it so far but then I will do very little at home to compensate and then there are times, usually when I am cognitively affected too, I have to say no and take time off.

It can be done. It's such a shame the flare has happened at the start of your job.

[Belee in reply to Whathappned]

thanks for the reply whathappned. It is indeed very disappointing that I'm flaring now . So frustrating.

I spoke to my new work place this afternoon and thankfully they were really nice. They said they can hold the job for me for a couple of weeks, which is a massive help. Just got to try and get myself well now!

[Paul_Howard Partner LUPUS UK]

Hi Belee,

You may want to read our booklet, 'I want to work - a self help guide for people with lupus'. It includes some advice about managing in the workplace, including information about support that is available to help make things easier. You can download it at lupusuk.org.uk/working-with...

Have you discussed with your consultant whether they feel your lupus is as well controlled with treatment as they would like?

[Belee in reply to Paul_Howard]

thanks for that Paul. very helpful and informative xxx

[Debra60]

I work full time in a demanding role with a long journey, we did this in order to move and have a nicer house etc. etc. That was all ok but now I really struggle due to my health (I have sle). If u have the choice to work from home when needed and generally have the choice of flexibility I'd take that all day long. Plus u run a home and children which is a job in itself, something I don't have to do as I don't have kids and I still find it tough. Nobody can tell you what to do but in my book since being diagnosed your health comes first and you do whatever I can to help that. Nothing is more important than your health, something money can't buy. Good luck!

[Belee in reply to Debra60]

Thanks for the reply debra60, I'm determined to give it a go, if I feel better in a few weeks time. However if I still feel rubbish Im just going to tell them no & continue as I am. So lucky I have such a supportive hubby! Sorry to hear you're struggling. Hope things improve for you soon xxx

[Hidden]

Ultimately we are all different and working can be a benefit or a curse according to what day of the weekt is. As an ex nurse I would say your job choice will be both emotionally and physically challenging. However, ultimately rewarding. I think try just don't do too much if your body starts to say no. All the best.

[Belee in reply to Hidden]

Thanks Johare, Im determined to give it a go as I like to feel that I've done something good with my day & Im fed up with this lupus making me feel old before my time. Luckily my start date has been postponed for a few weeks so fingers xd I'll feel OK by then! Xxxx

[Hidden]

I wish you all the best. This could be so positive. Just pace yourself. Your family need to support you, as you know at home when you start don't be superwoman and I'm sure you will succeed.xx