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35 Posts
Discussion Starter · #1 ·
Hi hope you all well as can be ?
I went back docs today, got another sicknote (SSP) for a month. total then 15 weeks on sick with lupus etc etc etc.....
works medical referral ringing me in morning (15 mins chat) LOL
then they (on my managers request) to write to rheumy at hospital and my own GP.
All this time off poorly - valid reason too, with this chronic disease etc, feels like your whole world been turned upside down overnight. the days are long staring at 4-walls on your own (hubby at work).
On meds, now im feeling sickly and pains in eyes, last monday had funny turn, a migraine and vomited badly, new to me, there you go, seem to feel off colour. wonder if its the plaquenil only on 200mg one tablet daily, been on it almost 4 months. didnt feel like this 2 weeks ago.
will ring work tomorrow update my boss ! when I do go back (work fulltime) going back on "phased return" working over 5 weeks gradually to my 5-days fulltime 37 hours per week. told them ONLY and after that MAYBE ONLY then apply for reduced hours i.e. I plan on 3 days maximum. that financially will kill our finances here, but my health important too. have to just cut back, no choice really.
also gonna send my DLA form in.
got a welfare guy home visit next tuesday to help me with filling in the damn thing ................. LOL and my rheumy appointment next thurs 25th june.
suppose things are going in right direction, but hate this sickly business and "out of sorts" and eye pain and rubbish......................... it worries me, does anyone know what I mean , seriously please ????
love, hugs regards and very best wishes to you all.

Diane xx

3,471 Posts
Daine i was the same as you, off work then in work, then off long term, seeing occi health, then last december they finished me. i just couldnt do it,

i did go back in 06 did twelve months, but cut my hrs down to 15per week, sometimes though they still give me more clients to do, then in 07 went in to have my bunion done and things just went down hill from there really. but i do have to say cheshire county council were wonderful with me,

i know where ytour comming from, can i afford to finish how will we manage, i went through all the same. And now got huby home made redundant. but hey we still manage.

As you say your health as to come first, and only you know what you can and cant do, i tried pussing my self, think to hard.

i send you my best wishes, and good luck, with the dla form grrr!!
hugs Lin xxxxxxxxxxxxxxxxxxx

86 Posts
I hope it goes well Diane.
Incidentally I really struggle with mornings (getting up early and functioning within the first hour) so these days I ask for afternoon appointments, and for people not to phone prior to 11am etc.
Most people don't mind at all, and actually it could count as a "reasonable adjustment" that your employer will have to make under the DDA ( DDA stands for "Disability Discrimination Act" so you have to accept that you are "disabled" if you want to use this law)

I had a similar experience as you re work.
Asking for phone consultations, GP appointments etc to be after 11am if possible, actually helped everyone realise what problems I had with Lupus, and just how fatigued I was - for example my first "phased return" involved part time hours but I was still trying to go in for 9am (it did not work) so the next phased return they tried involved seeing if I could do afternoon shifts

Unfortunately my experience is not upbeat and I hope it does not worry you but after several attempts to return to work in the end I got "retired through ill health" as employment was impossible for me (and still is despite having what has been referred to as "mild and stable" Lupus)

I think a lot of what I went through was part and parcel of the procedures that my employer had to follow to support me in going back after sick leave, in getting occupational health to have my medical details/reports etc before they could even consider if I had to go down the "retirement route", etc, etc.

A word of warning - It was actually detrimental to my health to keep pushing myself to try getting back to work (although I think you probably do have to try before you really know how your Lupus and your working life do/do not fit together)
Also I had all the stress and worry re how I could manage financially if I did not work, I got depression re not being able to continue in the career I loved etc, and this was not good either.

In addition I found myself in a "catch 22" situation as initially I was asking my GP, and consultant to say I was fit for work and then I needed them to back up why I was not fit for work, to help in my appeal to get the "ill health retirement"
(Initially after several failed attempts to return to work/ a lot of sick leave/ sick pay running out I was "dismissed due to ill health" but I was not deemed serious or permanent enough to get "retirement due to ill health" and the pension money associated with that, so I had to then appeal that decision/ prove I would have lupus permanently and that it would permanently affect my ability to do any kind of employment)

Please be kind to yourself but be realistic as to your "limitations due to lupus".

Life may have to be very different but that is not necessarily a bad thing (for example I'm now on a tight budget, I'm "retired" yet under 45years old, but my Lupus is much more manageable now and more stable.)
I'm not also trying to push myself to be "working" but instead I'm looking at other ways I can occupy my time and skills that fits in with having Lupus and all that entails.

Re finances as I'm in UK I am entitled to social security benefits (eg I get "incapacity benefit" (IB) that is adjusted according to the fact I also have an "ill health retirement pension" - In order to get this I have to "prove I have "disabilities that prevent me from working" - so I needed supportive GP and consultant etc before I got anything).
Also the benefits system is all changing at the moment (they are bringing in ESA instead of IB and everyone at the moment seems a bit confused how this will affect those of us with lupus who can not work)

80 Posts
Hi Diane,
Heres hoping your workplace will be supportive.
My experience was Boss contacts Occy health, had an interesting talk with them re stress at work not making things any easier. I had found that after a weekend or time off I was able to do a lot more than if i was working a full week_! So it was suggested that I work Monday and Tuesday Have Wednesdays off and then go in Thursdays and Fridays. This seems to be working. Although I still get times when I have to take the odd day off as annual leave fortunately I have worked for the NHS for ages so I get quite a lot of leave compared to some workplaces. Perhaps you could work something like that, of course it means less money but that is not so bad as feeling like pushing through to get to a weekend and then spending it crashed out in bed.I also don't start till 9-30am which helps me to get going!!
Hope you get something sorted , meanwhile hang in there and take it easy --I think I know what you mean about being sick of feeling sick It would be nice to wake up feeling 'Well all Over'for a change!!:)Best wishes Sue

41 Posts
Hi Diane

Just wanted to wish you all the best. I have just gone through all of this. Like the other posters I went back to work, firstly on reduced hours then building up. Had to use my leave one day a week as I was so exhausted. Then, one day I collapsed at work and went back to my GP who signed me off indefinately.

After a long haul of occ health appts, reviews and appeals I have just been granted ill-health retirement. Mind you I am 59 now and I would much rather feel well and able to work.

I know this is hard but try not to worry (I used to get very worked up about interviews with docs and employer).

Wishing you peace and better health.

Jen x :rose:
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