Taking time off

Hi All

I am coming under increasing pressure from friends, family and doctors to take time off work but I am really reluctant. I worry about the what it looks like at work, but I am pretty sure this is in my head and not a really worry to other people. The thing is, the Cerebral Lupus is active at the moment and I am really struggling putting complex ideas together and assimilating information. Things that are normally my speciality are suddenly very difficult. I get dizzy and struggle to read (although, this could be the steroids), I find concentrating on one thing difficult. But I don't understand what taking time off is going to do for me.

It's not like this is a cold and the body will make it better... My doctors are on the case but what if it never clears up and this is how I am going to feel from now on...? How will I get back into work? I guess I am concerned that if I have a week off and don't feel any more stable in my head that I won't want to come back to work. I am scared of not being able to work I guess, and the idea of not being able to do my job to my normal standard feels a bit like defeat.

Has anyone had a week or two off with cerebral Lupus and noticed a significant change? Has time off helped? My work are trying to help to make work easier for me, I suggested working from home one day a week (that would save me 3.5 hours of travel) but people are telling me to push further... Any advice would be gratefully received, I just feel so guilty because I know that if I had a week off I would be gardening and walking the dogs which feels wrong for sick leave....

thanks in advance

Tx xxx

10 Replies

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  • Tasch...I feel for you...I am at a stay at home mom and have sacrificed my work for my kids. I never liked what I was doing,but would love to go back to school and finish what i loved, anthropology. And get back into and work in that field. What a joy...long story....anyway, I wonder with my foggy brain how well I would do going back to school with my learning disability and memory problems. I try to remember what I read here from someone once, I think it was Adrian....part of who we were may not be able to continue....but someone else said, it can change and we can still have joy in our lives. We can still do something we love and participate in life. That is my hope. I am still hoping...good luck with your decision.

  • Tasch, the only advice I can give you is to REALLY listen to what that inner voice is telling you is right for your body. This means ignoring that little voice that tells you that you can keep going, you would miss the finances, you love your work, you would miss the work banter, you have a sense of purpose etc etc. I truly miss all those things I have just listed but truthfully I know I could not go back and do my job nearly as effectively as before. I kid myself on my good days that if things just stay the same for another few good days then I'm going back. The reality is my body always lets me down. Mind you I acknowledge I worked for 30 years (I'm 51) in a demanding social work role....but I loved my job and was not ready at all to stop. This has been one of my biggest bug bears! But out of this I now get a sense of achievement for the small things and for the little things that I can achieve daily. Tasch, only you will know how bad things are at the moment but I have not working can also bring it's rewards. For me I can keep on top of things at my own pace, without always feeling I wasn;t really doing anything well. It gives me time to swim weekly when I can, see friends ....all at a pace that's right for me. It gives me time to plan healthy foods which in turn will help my immune system more. To be honest too when I still see work friends they are so often stressed and talking about local cut backs etc etc. I hope you keep us posted Tasch as am interested. x

  • Hi Tasch, when I walked into the rheumy's room on the 19th Dec. I had every last one of your concerns. The first thing made clear to me was that I had left it too long to see him.

    I hadn't even heard of cerebral lupus it was only after about 6 weeks off work I realised how ill I was and then it took longer to accept it.

    I have now been off 6 months and the rheumy said last night that I am no where near ready to return to work yet.

    A bad flare of Lupus changes you I now realise that I no longer fit in the Corporate world and have to make some changes. What they are I don't know but I now accept it .

    Good luck with your journey xx

  • Hi Tasch

    Don't be scared about taking time off work to help you recover from a flare. If we push ourselves we can only make things worse and it's not worth it!. Your very fortunate that your work wants to help you, they rightly really value you and it's a good idea of yours to work from home for some days. If you cut your hours you could always go to your local Citizen's Advice Bureau to see what help you could be entitled to to make up the shortfall. They would help you fill the forms in.

    Think of it as having holiday time off to look after yourself and get better. I've had to do this now with my voluntary job to recover from a flare and I'm lucky they help me so much. I think it helps if you keep in touch with your employer so you still feel part of their workforce.Hope I've helped and you feel better soon?. X

  • I have been self employed for some time due to caring responsibilities and as I also have fibromyalgia, concentration is a real problem. I've been in a really bad flare and the sulfasalazine has stopped working, so I have felt full force just how bad it can get all over again; can't keep track of anything, can't put a coherent paragraph together...I have plenty of work opportunities right now, plenty of offers for things to bring in money but I haven't been able to do anything. My garden is a mess, I've paperwork in heaps because I can't seem to comprehend what I am reading. So I feel you.

    One of the hardest lessons I've found with chronic illness is that sometimes being assertive and trying to "push through" just doesn't work. It isn't like the flu which will be over in a few days, so struggling just makes it worse. If you have friends and loved ones who can see how things are and they're worried enough to ask you to stop working for a bit, it's more than likely vital to do so. Will your employers be happy? Unless you're very lucky, probably not; they want functioning cogs in the wheel -in my case they just got another cog.

    We don't need to live our lives for work.

  • Yes, months & months off due to lupus at the peak of my success, and also months & months off earlier, just as my career actually began to really get going....all due mainly to cerebral & neurological effects of SLE (untreated). The length of time off, in my case was open ended and approved by my gp....my vertigo/cognitive impairment/fatigue cluster needed more than 2 weeks off, for sure!

    my version of this means I do feel I can relate to your anxiety & concern....but you've got such great replies already, that I wonder if all I should offer is some testimonial:

    So, yes, I worried & worried about doing this, probably aggravating my symptoms, but now I"d recommend it if poss...and I know others who have managed this.....my husband had to have a lot of time off work due to crohns in several phases both as a young man and as a success in his professional career. Ultimately, I had to take early redundancy in my 40s, but my previous employer kept me on as a consultant AND I gained clients who gave me even more satisfying work than I'd had before. Likewise, mid career, my husband gave up working in London, set up his own practice here at home in the country....a huge client switched over to his practice....working from home, he became able to pace himself more conscientiously, which resulted in better health generally, AND he got off daily steroids after decades on them...to find his crohns went into remission....

    You've got great replies to your question, so I feel adding more is unnecessary duplication, but I could go on & on: this is a BIG subject, DEAR to my heart

    May I urge you: do go gently, do look at how you can slow down, if not take time off altogether

    My feeling is that your wonderfully upbeat, thoughtful posts on this forum are inspiring many many of us...now you could go on to help others see how someone of your accomplishments, with significant major health challenges, can take time off from career and make even this into a positive...

    Take care

    XO

  • Hi Tasch, you've some great replies - I hear where you are coming from. I was stupid and worked through pyelonephritis and a flare despite, in retrospective, ei g really poorly in January. Not sure I'd do it again. No one thanked me, and it probably took longer to get better as a result. I'm off to OCCH - self referral - in 2 weeks to get on my notes that I have lupus, so that it can be factored in if I get that I need time off in the future.

    You don't say whether you need to work - also a consideration. With 3 growing kids, one of who s passion is music, the other sport, I couldn't ask them to give up - which they'd have to, as well as pay the mortgage etc etc. but all our situations are different.

    Maybe you do need a wee bit of time, and if working is something you need/ want/ would like to keep doing - maybe look at what is there to help you in that process. Eg access to work (government well kept secret - worth looking at)

    It's really important to be kind to yourself - and if you do go off, do NOT feel guilty. You are poorly, and I bet, you would say the same to others if you we're reading the post.

    Take much care and good luck xx

  • Hi Tasch, I am going through exactly what you are, having a major flare with dizzyness, brain fog etc. This is the first time I have experienced it like this and so finding it rather scary. I have taken a couple of days off and have been penalised for it by work so really reluctant to take more time, just finding I have to work through breaks just to get the work done as I have to think so much harder and check everything. Would love to get 'signed off' but really scared as to how long its going to take to get better if ever, and then the associated return! Really feel for you. I know when I found this community I realised I wasnt going mad and wasnt on my own it really does help. Love and hugs to ya hope you get sorted :-) as I was told...... hang in there girl take each day as it comes!

  • Hi I have been off work for almost 6 months been told I have UCTD ,sjorgrens ,fibro reactive arthrits ,chronic fatigue , raynaulds ,nuralgia but not lupus I worked my self into the ground I wouldn't except I was that unwell there are now concerned about my heart you have one life, don't live to work ,you should work to live you have people who love and are concerned for you they have your best interests at heart ,my employers want me back to work this month the doctors have said no I got to the point I could not walk across a room ,don't let yourself get into that state ,I am listening to my doctors now it's proberly to late for me to lead a normal life I have had to buy a mobility scooter so I can take out my dogs on a good day ,I am to poorly to even use that at moment please listen to your doctors and family ,take care x

  • Hi All

    thanks so much for all your replies. I have relented and taken this week off.

    My main fear was that taking time off wouldn't help and sadly, I feel that that is justified, I don't think the flare up has gone, but I'm not worrying about failing to do things in the offices, I'm not travelling 3.5 hours a day (my commute is massive), and I'm nt getting up at 5.30 to walk the dogs before work.

    Yesterday was a bit of a breakthrough day for me too; i was shattered. I imagine that many of you will understand what I mean; I usually keep myself mega busy, running from one thing to the next and mostly trying to look after everyone around me (whether they need it or not!) so to take the activity level down and realise that I am so tired was massive.

    Work as being pretty supportive - I'm still nervous about it because they can't understand if they haven't been through an illness like this, but I remain optimistic.

    Thanks for the support, in a weird way, it is useful to see that others have struggled with these same ideas.

    It may sounds a bit sad but at 33 I have two dogs, a cat, a horse, a house and a land rover! I have no significant other (don't feel sorry for me!) so my work (as well as paying the numerous bills) is part of my identity and the fact that is a job that needs a good brain is something I have always been proud of, so the fear of losing the ability to do that job is immense. I am sure I will go back but not this week!

    Thanks again

    Tx xxx

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