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Discussion Starter #1
Ok Everybody........
I apologise in advance for a long and rambling post but I know I can count on you for an honest and impartial opinion.

Just to recap
My lupus took a downturn following a period of real stress both at home and at work plus completing a degree. I needed five months off work and got quite depressed thinking that my life as I knew it was over.
I am a NICU nurse and usually take charge of the unit when I'm there.
Recently i've not been too bad except the perpetual headche that I'm always banging on about and the fatigue that we all live with. I'm fifty by the way.

Now here's the thing
Ive been back at work for seven moths now and coping fairly well. My shifts are limitted to three a week currently on advice by rhuemy and occy health doc.
Now I'm thinking that perhaps I should make this a permenant position.
I've had shifts sometimes where I can just about walk home, I've come home and just had to crash on the sofa and stare into space for a bit til I get a bit of a second wind. Sometimes my head just spins with so much to cope with after a busy shift, and I can barely think straight.
I do love the job but the difficulties of working for the underfunded understaffed NHS are legendary. On top of this the demands of family continue. Mum had a couple of strokes just before this last big flare and I'm the one who gets the phone calls when Dad is worried and needs help at all hours. There are also similar demands within my hubbies family.


So.....................do I bite the bullit and say I cant increase my hours back to normal and stay where I am as a part-timer? Or do I try to get up to full time.
Hubby took one look at me today after a shift from **** and said that I really didn't look like i was managing that well. (Was two hours late off after being tied up in a child protection meeting.:worried:)
He's such a darling I feel bad about putting more financial pressure on him and we're financing a son at Uni although we have managed OK for the last months on reduced wages.
Also I feel it's a bit like admitting to myself that my high flying nursing career is over.........not that I wanted to go any further up the ladder really.


I know this is a waffley jumble but I'm really not sure.
Part of me thinks I'm giving in to the disease part of me thinks it's sensible to stay within my capabilities and not push it. I never again want to feel how i did last summer.

Please advise me all you experienced lupies................even if its just a sympatetic hug or a swift kick up the pants for being so indecisive ...........sorry brain turning to mush now so I'd better stop.
 

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Hi Bigsis,

I don't really know what to say. I think this is such a big dilemma for many of us.

Personally, after so many years of trying to battle through and making myself rather ill I am done with all that. I am now working very reduced flexible hours and if it doesn't work out I'll find another way to survive.

Like you, I have a really supportive husband who, if I mention extra work, just looks at me and says "you are kidding right?" and he is right. I am not up to more, no way, I'm not even stable yet.

I am now a lot less stressed. Have more time for my kids, husband and life in general.

I remember life just being a sort of "survival" thing. I don't want to go back there, not for anything in the world....and I used to be hyper ambitious :lol:

still, that's just me, it's a hard one, really hard and at the end of the day I think you've just got to look at yourself honestly and know what's best,

best of luck with it,
Katharine
 

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I say you know yourself better than anybody, if you feel you're coping better with less hours then the rest will fall into place.

Personally, I work only part-time. I don't think I could handle full time, all I would do is sleep and work. My husband is very supportive and understanding and we've learned to adjust quite well with a little less money coming in.

I figure it this way...the more I worked, the more tired and stressed I was, the sicker I got, the more money I spent on medication and doctors. Vicious cycle it was:rotfl:

Good Luck with your decision
 

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BigSis

When you are ready to make your choice you will just know what is the right thing to do.

It can be tough nursing in the NHS. How many do you know that continue to work full-time until they are 60? There are plenty out there, but the percentage isn't too high. Shift workers die younger than none shift workers.

Which honestly comes first for you at the moment?

Is it your career? Is it your health? Is it your family life? Is it finding a new way of being?

It starts to get really important to keep your pension safe, but you can do that as a part-time worker. You get the same holidays pro-rata, and if you keep the post you are happy in, you can get to do a job you enjoy with enough time off to work more effectively in all aspects of your life.

It is not about letting go of a high flying career. You might decide to stay because that will make you most happy.

But surely if you choose to continue part-time you could see it as taking control of your life to maintain your own health (what advice would you give to a person trying to manage lupus?) for your own good and that of your family and lovely husband. Have it all, almost.

I went through a mental nightmare trying to decide whether to give up nursing - it was abit easier for me because by the time I left I hated the whole mad lot of it.

But it was a mistake for me to leave.

I should have gone part-time in an area i actually enjoyed instead of completely throwing in the towel. At least i would have a decent pension to work towards!

However, after a range of other jobs I look back and feel my health might have been a bit better had i worked a bit less hard for a shorter period. I also feel sorry for many of my old colleagues who absolutely feel they must continue because they are afraid of losing a role that they have worked so hard for, and which now pays them a wage they could not easily get outside of nursing. Many have all sorts of family problems and they are often over tired and bogged down with yet another course and a new hoop. It really is tough.

Let's face it - nursing has you jumping through hoops repeatedly, and whilst it feels great when you are 'up there', it is a heck of a price to pay if you become unwell and have to keep the expected behaviour up - what ever the illness. There are so many wonderful jobs out there that do not do this to people.

On the other hand, depression is a terrible confidence thief. It may be too soon to decide anything at all, because you may simply still be coming to terms with having suffered depression. Kind of changes how you feel about yourself, doesn't it?

If you asked to stay part-time, then changed your mind after 12 months, it might be pssible to increase your hours again anyway. or am I really that out of date? I do hope so :smile: It has been 16 years!

You can allow yourself a far bigger part-time rest than you have had when you are dealing with so much. A lot of people would have totally given up by now with a fraction of the things you are trying to manage.

My message is wait ... wait ... wait - until you feel sure.

Right here, right now - Everybody else can wait for you for a change.

Be gentle with yourself BigSis and best wishes when youa re ready to decide. and remember too - you do have the right to change your mind at any point.
 

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I would suggest you take your time and really think it through. What would ultimately make you happier, and healthier, and less stressed? What would be best for you and your family and all the things that are important to you in life? For some people, that answer would be working full time and for others it would be working a reduced schedule. I would guess that working reduced hours would be better for you overall though, speaking with the bias of course of someone on disability due to lupus ;)

If you decide to try working a full time schedule, could there be a trial period? Could you back out quickly and easily go back to your current reduced schedule? Play out all the "what-ifs" and you'll probably find the answer you're looking for...

Good luck with it all.
 

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Hi bigsis

I just want to wish you luck with your decision :luck: & send you a big sympathetic hug :hug:

I agree with the others that you should take your time & consider all options..maybe write a list of all the pros & the cons?

I can relate to your fear of the disease taking over your life as that was one of my biggest fears :worried: but as you said it's about about knowing your capabilities....unfortunately we also have to adjust and adapt our lifestyle to cope with the disease & have a better quality of life.

I would do whatever feels best bigsis & go with your instinct...hopefully whatever choice you make will be flexible anyway & can be changed if the need arises.

take good care & keep us updated..karen x
 

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Discussion Starter #7
Thank you so much girls:grhug:
I really appreciate your consideration.

You've given me loads to think about. It really is so amazing to find people who understand what this is really about.
Bear with me please and I will get back to you.

You have become very special to me.
:flower2: :flower2: :flower2: :flower2:
 

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Discussion Starter #8
Update

Hi All,
I know this is something many of us have to think about at some time, so I thought I would come back to you and wrap this thread up.

the mini flare I had (due to a break in the plaquenil) made me realise that this disease is barely controlled and I really shouldn't push it.
So........i spoke to my manager and asked if it were possible for me to keep working with the reduced hours.
She was very sweet(she has been very supportive throughout) and agreed at once. She felt it best to do so if that would enable me to keep working.
She added that it needn't be set in stone and I was free to reassess my contract in the future as necessary.

I feel releaved that the decision is made now although of course financial adjustments will have to be made.
Hubby too just wants to keep me as well as possible
Thanks again all.
 

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Hi bigsis

I am glad you came to a decision,thank you for updating us.
yes I can imagine you do feel relieved now that your decision is made & it's good that you have no regrets etc..so it seems to me that you have made the right choice then!

your manager sounds fab! I am glad you have such a supportive boss & husband too!It makes all the difference :)

take care,I hope you adjust well to your new situation.
love karen x
 

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That's great news Bigsis. These decisions are always so hard and torturous whilst making up our minds but once that's done we often feel so relieved and a weight is taken away when we realise that we won't be trying to do something we just aren't up to.

Katharine
 

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just wanted to say i think you made the right decision:)

Rachel
 

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I'm really happy that you were able to go part time and that is going to work for you. :cheer2:


But I have to admit that I am bitterly envious of people with husbands who can help or are supportive as well as those who can work part time. I live alone and am supposed to do all the errands and bill paying and housekeeping myself. And if I WERE able to work part time I would then be reducing what I can get when I go on disability because I have long term disability insurance that is based on my salary. And the depression just sucks. I'm on the only medication that we have ever found that helps but it still drags.
 

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BigSis, I'm glad you made a good decision and life feels a bit smoother.

My husband has been the sole provider since I first fell ill five years ago. It's not easy. But he tells me all the time "I'd rather be poor with you than be a well-off widower."

Sunny
 

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BigSis,

I feel that I can throw my hat in the ring on this one because I was a Supervisor over an ICU before I slowly left the health care provider scene.

I initially worked the night shift 7p7a at least three nights a week and sometimes more, depending on staffing. And those of us in the health care field know all about that. I had also left my husband of 14 some odd years and moved my four children to a new city. Talk about taking a big bite. Anyway, I give it my best and finally decided that it would be much easier on everyone if I worked days. I was fortunate to be able to transfer to days, take a small pay cut and work in the same department doing what I did best.

Then it all started. I was not sleeping well, if at all. I was cranky, tired if not exhausted. Every bone I had ached and muscles I never realized I had, reared their ugly head. My hair was falling out and I really thought iit was because of a nasty divorce and children and soccer games and practices, basketball games and practices, and doctor appointments, school plays and and and......you get the point. Then I finally hit a brick wall and got sick. Not just sick but darn near dying sick and then yes, it was official, my Lupus was out of remission. In one years time, I spent six months in the hospital and many of those moments pondering what was next.

Well my docs informed me that if I was sicker than the patient and took more pills than the patient, then I couldn't work as a nurse. HMMPHF! I was not happy, I had worked so hard in nursing schol and gave up so much to have my career cut so short, but so be it.

Anyway, If I were you and was able to still live my dream and work in a career that gave me such satisfaction, I would maintain a part-time position. If you are having a good week then work extra hours. As we all know there are always lots of those around. While we love to take care of people and help them thru their time of need, this is our time of need and we need to take care of ourselves. It took me a long time to get to this point but it is true. I am now a stay at home mom, able to run and do whatever needs to be done. Well, the days that I feel good anyway.

Hard decision, truly think of yourself and what you need.

Nancy
 

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just to add to the others!!

Hey - just wanted to say - its great you have such terrific support from your mangr in your decision to stay part time. at the end of the day - no matter how much money you have, cant enjoy it if you dont have the health. I was working in a busy ITU as staff nurse when I was diagnosed. I loved the work, but knew I had to move to something less stressful if I wanted to give best chances for my lupus to go into remission. After spending the next 4 months working in a hot HDU, I eventually left & now work in endoscopy. Still managing to work full time hours on same salary - but work stress is so much more manageable. Plus no more nights & weekends & bank hols - great!

Sure, I get bored & miss the buzz of the ITU environment & worry that I will deskill, but the trade off is I get to spend more quality time with my husband, I am less stressed with work & more importantly, I am able to get on with things that really matter. I work to live not the other way round.

I must say that I feel extremely lucky to have such a loving & supportive husband. After being single with meaningless 'here & there' relationships for about 5 years previous, I was certain I was going to grow old alone, but good ol father fate changed that!

take care & enjoy the wonderful life you have ! x:)
 

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Dearest Friend Big Sis, I am so happy this has worked for you.
Cuddle for Jirel too as you sound understandably fed up.
x lola
 
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