Managing my Lupus without having to work has been so much easier!

Managing my Lupus without having to work has been so much easier!

I was made redundant back in February of this year, two weeks before my 50th birthday. Having had a boss who was very understanding and ensured that ALL reasonable adjustments were made in order to accommodate my Lupus for several years, I am now unemployed! However, the last six months have meant that I have had my life back - or at least some of it. I really hadn't realised how much I adjusted my lifestyle in order to get through my working week. Now I have a social life again, even a little spare time to read a book or take the dog for an extra little walk. I've had time to nurture the great friendships I have, which, as a single person living alone with her dog, has been wonderful. It was a great friend of mine who pointed out to me that the reason I probably won't get any financial help in the form of PIP ( ex-DLA) etc. is because I have become an expert in 'managing' myself. As long as I get plenty of sleep - including 3 hours every afternoon - and feed myself properly, ensure I take ALL my tablets and don't deviate from my routine, I stay 'quite' well.

Now I can look forward to all the stress of seeking a new job - for I can't survive for too long without - interviews, journeys in and out of work, parking, holding on to my job, worrying that I'll 'be ill' too often, convincing my employer that I am worth investing in. Oh joy, at least the summer has been nice! Will I even get a job now?

Anyone who knows me well knows that I have to have regular duvet days and that, unfortunately, means time off sick from work. I can't be self employed as it might mean having several months off with no income - I also can't pretend that I don't have Lupus to a prospective employer. What am I supposed to do when I wouldn't even employ me?

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  • I couldn't agree more. I am like you, if I rest sufficiently, plan activities so that there is always down time scheduled in afterwards, don't do the high energy activities that I know wipe me out (like a supermarket shop) and stop when I can feel I have done too much I keep pretty much on an even keel. I have even learned how to not get stressed over things as stress is a real trigger for me. I am self-employed and work part time using my skills in a way that doesn't wipe me out by having more control over my time. Because my husband hadn't had any work for the last two years I became the breadwinner and as well as my self-employed work I also began to work a couple of days for the NHS to ensure some regular income. That two days a week was nearly the end of me - getting up early, travellling to work , finding somewhere to park, working like a trojan alll day with no time for lunch and then travelling back home in the rush hour brought my lupus on and pretty much wiped out the rest of the week. It got so I was working, feeling ill, resting, working ,feeling ill, resting and doing nothing else - and that was only two days a week. It was a real shock to the system as I realise that I will never be able to hold down a full time job again. Luckily my husband supported me really well so I could focus on earning which made things a bit easier. He has now got work for the next year or so and I am so relieved to be able to cut back, stop my two employed days and get back into a routine that works for me. I know I would never pass any medical tests to prove I was incapable of working but I also now know that I would be off sick so much if I tried to do a full day of work day after day. I manage okay doing it my way and the quality of the work I do for my clients is good and appreciated. Sometimes I get more work and do it despite feeling whacked so I can put money aside and take it easier during other parts of the year. Mostly I am happier earning less and having more time. Generally it works out okay. I really wish you the very best of luck in finding a way of earning a living which doesn't completely mess up your health.Its such a catch 22. All the best, JudeeB

  • You are so me. I had to give up work some 12 years ago and although it took me two years to accept I couldn't work mentally. It has been the best thing that happened to me, does that sound strange. Like you it's not that you are without the same problems but just seem a little more manageable. I can rest more be slower at what I do and not sitting all day at a desk helps my joints. I can also manage stress better. Life isn't perfect and someone who is never ill would say it is they couldn't cope but on the whole it is the not working that makes it easier. Go for the benefit I get it I was refused but appealed and I got it. It wasn't easy I was quite happy to say how much better my life was(again a little strange). I had to go into them and talk about my worst days that when you get infections they don't go away easy, the pain on sitting, walking or standing more than ten minutes. I felt like I was making it up but you know you are not. Take a friend with you who knows you and get a good letter from your doctor for support. Don't give up its your quality of life that is at stake. Like you say who would seriously take some one on who is ill when so many are unemployed. This government has taken this too far. (My opinion). I have to reapply every year but if I haven't improved I can't see how they can refuse although you never know. Good luck and go on as you are. X

  • Thanks JudeeB and Gillyg - you have given me more courage to fight for benefits. Trouble is I've been feeling so much better since not having the work stress in my life!! All it takes is to catch a cold tho' which then goes to my chest and then I'm ill for weeks! Need to find some stress free home working to keep me going. D xx

  • I am not yet in the same position but feel I could be soon. I have been on long term sick with my employer but could be released at any time.

    If that occurs the whole thing about having to fight for assistance is concerning.

    Having friends in France and being aware that it is still possible to find reasonably priced accommodation I wonder about the future possibilities of relocating to a reasonably priced property in France. What is then concerning is transitioning into a different health system and maintaining any medical treatments/medicines I am presently in receipt of.

    I would love to hear from anyone who has done something similar.

  • I am in the same situation, on long term sick, and keep waiting for the call to HR for a medical. I know deep down I can't work but have been advised to hang on in there until I am kicked out as it might go against me claiming benefits if I resign willingly. I have come to the conclusion I can either work OR have a semblance of quality time with my family but I don't have the health to do both. Daughter wins that one!

  • Hi Davina,

    Totally empathise with you. I gave up my career as sales manager for a luxury tour operator when things got too much. My daughter kept saying to apply for benefits and until last November I resisted even though I had paid in all my life and kept going when I shouldn't have...anyway, I applied for ESA and submitted the form along with a copy letter from my Rheumatologist..I was totally honest and said that some days are good and some bad. Also, like you if I pick up a cold it goes to my chest and sinuses and I am laid up for weeks. Anyway I was immediately put in the ESA support group and haven't had to go for any assessments or interviews.

    All I can say is, apply and back up your application with a letter from your GP or consultant. Wish I could just pick up the phone and have a chat!

    Take care

    Liz x

  • Thanks so much! My email address is - can give you my number there! Dx

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