New to this

I have only been diagnosed with sle for a few months. My pain got so bad I could'nt walk and at one point had to use a wheelchair. Thankfully I got my ddiagnosis and I'm finding it difficult as I do not know anyone who has the illness. I am also struggling with the flate ups and work and have had to cut hours and nightshift. If anyone has any advice please let me know. Thsnkd very much

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  • Hi Lucy86,

    Welcome to the club. You still sound very poorly and as you say, struggling at work. Those of us who have lupus often think we have to struggle on despite feeling ghastly. I wonder if this is because we mainly look quite healthy and if we go off sick we think that others will think we are malingering.

    Your health is so important. Your body is continually fighting this disease and needs plenty of rest. Put yourself first and take time off to consider your life and position re work.

  • Hi Lucy, I'd definately say listen to what your body needs. I too am struggling with work and am in the process of having my hours reduced again. I went for so long trying to keep it up and pushing through way past what I should have been.. facing the consequences! It's just not worth it.

    Take care :)

  • I found it a relief to have a diagnosis and gave my self a good 6 months to let it sink in, good to know I wasn't crazy! Do the research, try not to commit to too much with friends and family. Rest and rest some more and keep checking into this site. We all understand and someone is bound to have an answer or word of support. Try and find your triggers, be it food, work, stress etc. don't be too hard on your self, with Lupus I find it IS better to put off till tomorrow what can be done today!! Accept your limitations and write stuff down to tell your consultant. Work is a toughie bit I keep it to myself through fear of looking a moaner, but am about to tell my manager in the hope we can work together on reducing the triggers. Probably best to be honest and direct rather than having odd days off sick. We all want to be taken seriously I suppose.

    Hope this advice helps.

  • sorry your so poorly and have SLE give yourself loads of time Gry if needed accept all the help you can, be kind to yourself. know i probably shouldnt recomend comfort eating but chocolate has its pluss points if not over done. hope the treatment your on kicks in soon to give you some relief. it often takes time for treatments to make the most impact on the disease try to be patient ( eaier said than done) i'm dreadful at this. and welcome.

  • Hi Lucy, I was diagnosed this April after nearly 20 years of fighting, having scans all started at 14 with minor clicking to my fingers but has got worse over the years.I'm still working, I run a special needs children's centre.I'm now beginning to understand my limitations but I'm really stubborn.I dont take days off unless I cant physically get to's difficult, I've yet to pluck up the courage to tell my mom and husband know,work have an idea, but my siblings are a different matter.looking after and putting you first is easier said than done.don't let it rule your life but do look after yourself, if you don't, you'll only make yourself feel worse.I hope you feel a bit better soon.:-)

  • Hello Lucy - I have been diagnosed for a year - I would suggest really trying not to do too much. The usual difficulty is that you don't know until after you've done too much!

    There are some very supportive people here and on Facebook and join Lupus UK - there may be local groups in your area. Also read up everything you can on lupus - but only up-to-date stuff! Also try to build up a good relationship with your doctors and note all your symptoms and what makes them worse

    Take care and hope you feel better soon. xx

  • I was diagnosed 3 years ago after having problems since puberty. I am just 50 years old! It was quite a relief getting the diagnosis because it answered a lot of questions I have had over the years, the headaches, skin problems, joint and muscle pains and worse of all, the teasing because I was always tired. To be honest I would dearly love to reduce my hours at work or even give up all together but as I am divorced and live on my own, I dont know how I could afford this, so I just keep going until I seize up completely, then go sick for a few weeks. My employers know I have sle, I actually work for the nhs as a nurse, but that still doesnt stop them giving me a hard time when I do go sick.

  • Sue, I am an ICU nurse. Unf. I was basically bullied by my manager (and other staff) every single time I suffered migraine, or had a flare coming up and had to phone in sick. It got so bad that I left my work at this wonderful NHS hospital. Some of the staff there did not even know what SLE was. They just thought that I wanted to find an excuse to stay home. Now that is what we call the real NHS spirit!

  • Is it an NHS thing then, I think I am starting another flare up now as my whole body seems to hurt!, think I may have to go sick soon, but I know if I do, I will get sent to occupation health again and also have a HR review, I just cant stand it all.

  • Sue, I can honestly say that I really, really know what you are going through at work. I got the feeling after being sent to that they were not working in my favour. They even suggested that I should 'maybe take some time out' = other words for pack up your things and leave the hospital. Whilst I was having the HR review. Suggestion to you? Already now contact an independent legal advicer. AND the Union rep. Who should sit in on every meeting you have with the manager or occ health. Please let me know how it goes..x

  • Hi Belle, I have had contact with the RCN union rep last time I had a review, I had been off 11 weeks cos I fell and broke my arm when I was having a flare up. She was quite good, but scary, she really gave it to my boss a couple of times. They keep saying I should cut my hours but I cannot afford to, I would be better off stopping work altogether which I do not really want to do as I love my job, its just gets so hard sometimes.

  • Dear Lucy

    I am pretty sure to say that we all have been there in one way or another (I still am). I am however really sorry for you for what you are going through. Like many of the other members I think it is vital to learn where your limits are, to not over-DO-it. Because it will always come done and chase you after. But you will need to talk to your Rheumatologist as well, to find what treatment might for you. Because what might work for me, does not necessary work for you. If you feel that your Rheumatologist does not listen to you, ask to see another one. Good Luck, remember you are not alone x

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