Working with lupus is it possible??

[Ruth_lderry]

I have sle and it's really attacking my kidneys also taking fibro. Off work ATM but don't feel like am well to work again . How is lupus suffers with working?

Ruth

[MargaretGail]

Hi Ruth, having got back to work after 3 months off with kidney failure and chronic fatigue I managed to work another 7 years. I haven't worked for 7 months this time and unless something magical happens with my meds I don't expect to return.

[Ruth_lderry in reply to MargaretGail]

Hi Margaret thank you for your reply. I have been off now for 3 months and it just doesn't seem to be getting any easier for me. Feels like am not going to get a break from this. Just taking each day as it comes now. Ruth

[MargaretGail in reply to Ruth_lderry]

It's only the last couple of months that I have accepted my situation. once I did that psychologically speaking I felt better.

[charm81]

It's really unfortunate to come to terms with the reality that you may have to give up work for the foreseeable future. This has happened to me. As much as I wanted to fight on and keep at it, I had to eventually face fact. My body wasn't the same and wouldn't take command. Not worked since 2009. This scares me to bits, however i believe i will return to the world of work one day.

My advice is listen to your body. It is definitely possible to work with this condition as many out there are proving it. I suppose it's a case of sustainability.

All the best x

[misty14 in reply to charm81]

Hi Charm

A way of finding out if you can do something in work is to volunteer somewhere. Even if it's only one day a week as I do it's great to feel more normal and does wonders for self- esteem and confidence!. Hope I've helped?X

[Ruth_lderry]

Thank you for your reply. I suppose for the main time it's about taking each day as it comes now for me even low I feel everyday is a battle and there is no break in sight for me. But my great family and partner is keeping me going.

All the best to you too x

[misty14]

Hi Ruth

So sorry to read of your health struggles and the possibility of you having to give up work. Could I advise that you go to your local Citizens Advice Bureau who will help with any employer problems you may have and they will do a benefits check to see the help you may be entitled to. They will also help you fill in the forms as some of the benefits ones have to be done in a certain way to maximise success chances!

I can also add I've never been able to work since leaving school with this illness but have done a series of voluntary jobs when health has allowed so life doesn't have to halt, it's just making the best out of the cards we have been dealt!

I hope I've helped and you feel better soon.X

[Natura]

Hi Ruth...I am having the same problem. I need to work because we are financially struggling, but I left my last job because of the stress a year ago. I am finding it hard to get back into work especially since I seem to be having trouble just leaving a building. My brain is not what it use to be and I noticed this from the last couple of jobs I had. I feel like I can't work with a clear head. It scares me. A lot of people expect me to go back to work, but I feel I won't be so productive to any company where they can easily get someone younger (I am 51) and clear headed. I emailed a resume, and got turned down. There are so few jobs and so many young people coming out of college today. The jobs that I could get are retail where I have to stand on my feet for lengthy times and not get bathroom breaks often enough (which I need because of my kidney problems). I keep looking though, and hope that a fit will become available to me.

[Maresy]

Hi Ruth, I live in the states, & have to work a very stressful job managing a dept - my husband lost his company after the 2008 financial downturn here & has really not been able to contribute much to the household income since then.

Every day, I don't know how I'm going to get out of bed. But I somehow do. I'm so tired in the afternoons I am not able to concentrate b/c I need a nap so bad! I don't tell hardly anyone, I try to "fake it" instead. By the time I get home from work, all I want is to go to bed, & usually I do.

My quality of life right now is the worst it's ever been & I know it's the long hours I put in & pressure to perform at the job that makes it so. I have no magic advice. It's very tough to work when you feel so awful everyday.

What makes it bearable is that another manager has lupus too. Even if we don't have time to connect up & talk, when we pass one another in the hall, that knowing look helps me not feel so alone with this.

[Chantev]

Hi Ruth, so sorry to hear that you are having a tough time, like Marsey and many others who do not have any other financial income, I have had to work. I was a single parent with a teenager did not have much choice but to drag myself out of bed evEry morning to a very demanding and high pressured job. Fortunately did not have any complication other than eczema, but quite a lot of pain with the joints. As Marsey says we fake it, put the make up on, the smart suit, somehow hide the bald patch, smile and with sheer determination get through each day. I had to get help with the house work so I could keep all my energy for work. Have done so for the past 20 years...Have just retired but still manage to go to the gym going Pilates and yoga. My advice is to keep a positive mind and spirit and keep motivated. Hope this is of some comfort to you. Best wishes ChantaleV

[Hidden]

Hi Ruth

I am also having a rough time at the moment. I have SLE and have had a kidney transplant, but at the moment I am having a flare up in my brain... I work full time with a hectic commute. I am immensely stubborn and sometimes probably to the detriment of my health. My work are trying to assess me at the moment to understand how best to support me. I have mixed feelings about this as i don't want people at work to see me as damaged or weak (although, i suspect that is mostly in my head). it's the real problem with not looking unwell! That said, I had my transplant 10 years ago (I was 24) and i have been working ever since. (although, I cannot wait to earn enough to drop down to 4 days a week!!)

Having said all this, don't compare yourself to others - there will always be people better and worse off than you but no one will know what you feel. you will make the right decision...

Good luck and I hope you feel better soon... (you know what i mean!)

Tx

[Paul_Howard Partner LUPUS UK]

Hi Ruth,

We have a couple of guides which you may find helpful to read. The guide, 'I want to work' has a section, 'Now my lupus is under control I would like to return to work. Where should I start?' Which may be worth a look. You can download or read digital versions of the guides here - lupusuk.org.uk/living-with-...

If you need physical copies of the guides, just send me a private message or email [e-mail] with your address.