Hey everyone, I’m new

[LittleGamer]

I have been diagnosed with lupus in September after I had a really bad flare up where I ended up in the hospital for a week and couldn’t even move I was in so much pain. I am back home now and feeling a lot better but still recovering which will be a long process. Still got a lot of aches and problems. I feel like emotionally I’m all over the place and although I wouldn’t say I’m depressed I just want to cry, a lot. I feel like people around me don’t really understand what I’m going through and been through so that is why I wanted to join you

I have one question for you, I have been off work for 7 weeks and I’m supposed to be going back next week. I am not sure if I’m ready yet. How do you know if you are ready?

[Hidden]

hello, you’ve found the right place for support and information. I have an illness similar to Lupus but more towards rheumatoid arthritis so I won’t be offering advice about lupus but I know over the next few days there will be a host of advice and help and hugs sent from the users here.

It’s early days, be kind to yourself, crying is normal, it’s usual to feel low until things settle into a new normal for you. Post here whenever you need to let it out, you’re not alone and don’t rush back into work. Here’s your first gentle hug 🤗

[BonnyB]

Hi, i had a couple of months off with my first big flare. Was so nervous about returning. I was referred to occupational health and a phased return to work was put in place. I worked fulltime then . Phased return meant i did mon, tues and wed afternoons wk1. Then i did mornings the following week. Gradully building up over 4 weeks. On week 4 had wednesday off.

It really helped me. Hope this can be put in place for your return.

X

[LuluM25 in reply to BonnyB]

I’m now retired after a 4 month flare in 2014/15 that made me realise I wouldn’t be able to continue to 65 years of age. However as I worked in education I completed the academic year but in a phased return through occupational health. This worked really well and was helpful to me and in addition, to my employer, as I finished that year with my students. So, see how you feel and ask for a phased return if you think that will help. Good luck and take it one small step at a time.

[KnitSewPurl]

Hi Little Gamer,

Sorry to here you were in hosp for your flare up.

As for returning to work it will have to be up to you to know as listen to your body as the more stress you put your body through the worst you will get . at the moment you will need to find a fine balance of how to manage your flare up and keep it stable. Once stable and you feel better yourself start back work on a short hours and only a few days a weeks because you will find it will be very tiring and will wear you out . Basically this will build up your energy and stamina.

You can do this at home now by increasing your work load by doing simple work task that normally makes you tired like waking up ,walking up and down the stairs ,puttjng the washing in. having a shower, doing those simple task increasingly more and building those up daily and cooking and baking that also helps to build up and exercise daily - gentle exercise. stretching to help your muscles not tensing. I am not joking the tiredness and lethargy wacks you right out. I would speak to your manager about your return to work and see if you can work from home for the time being if your work is possible be done working from home.

What you will find also diet some foods to avoid might help keep an eye on what food you eat . that triggers your flare up. keep a dairy of things you do and food you eat. it will give you an idea how to change your life style.

As with me , I had food trigger with Garlic and mushrooms. Stress was also my main biggest issue. Each time I had something big to deal with I would flare up big time. I have had this SLE now for over 12years now It is the first time I have felt a bit better( I only get little lesion every few months only and psoriasis) for a long time but I have other issues at the moment spinal and hip and eyes( it is not link with Hydroxychloroquine) which i am trying to keep my stress level down as much as possible.

I continue to be on Hydroxychloroquine and arcoxcia these the 2 main drugs that was issued to me when I had SLE. Intermittently I had steriods injection ( i have not had this for over 2 year)for flare ups .to control and stop it from increasing.

It is still early days it will be a long haul . We are all here for you ☺️

Take care

[MEGS53]

Hi and welcome, LittleGamer

If you're asking whether you're fit enough to return to work, you're not ready imho!

Be kind to yourself and take as much time as you need to feel human again, I'm sending lots of gentle hugs 'cos you sound as though you need them

🤗🤗🤗🤗🤗

[poseymint]

My advice is to be safe because you don't want to end up in the hospital again. Take your time, listen to your body and put your health and well-being first. Its true that family/friends have a hard time understanding Lupus. When you are strong enough, perhaps you could go back part time? Its hard to ask for special accommodations from employers but with Lupus its sometimes necessary.