Working with lupus and worried about bills

[Bee1011]

Hi

I have raynauds and am waiting to see a rheumatologist for suspected lupus. I feel exhausted and in pain most days. My question is does anyone manage to hold down a job ? I work 30 hours a week I am a single parent with a mortgage I am in the UK can you claim any benefits ?

[fabwheelie]

Hi I had to stop working and got retired due to ill-health. I get social security ESA money (support group) but don't get PIP. I did have a mortgage but paid it off with a lump sum that I got as part of my medical retirement, as social security only paid the interest payments towards the mortgage, whereas if I had been renting housing benefit would have been paid to cover my rent (I think this is still the case)

The charity Lupus UK do some good booklets about working when you have lupus including one your employer could use as they do have to try make "reasonable adjustments" to help keep you working under equality law ... here is the Lupus UK link .. lupusuk.org.uk/working-with...

If you are not well enough to work then you should be entitled to the social security benefit ESA. This is dependant upon showing that you are not well enough to work and you have to fill in a lengthy form where they "score you points" about what you can and can't do in deciding if you are eligable. ESA is also dependant upon if you have other income. Some areas are currently changing ESA to Universal Credit which is a similar system

There is also a benefit called PIP which is paid if people need help with mobility and/or with personal care. This is not dependant upon income, and you can get this and work. However they are very tough on deciding if you meet the criteria for getting PIP

It is worth speaking to your Drs and your employer about difficulties you are having with keeping working. In my experience it is a very hard route to go down to stop working, However in hindsight I am a lot better with my health now that I don't work, and allthough I have less income, I do think my health is more important than money

It is also worth getting help and advise from a welfare rights officer to help you claim any social security benefit money, (my GP refered me to welfare rights at my local council social services). When claiming ESA or PIP you will need Drs to back up what you say on the form, and remember to spell out things like pain, fatigue, and whether you can do things "repeatedly" or "reliably" or only for less than 50% of the time as this all counts when they assess you

Lupus UK member can access free guides to claiming benefits done by the organisation "benefits and work", these can be useful in explaining the system and how to claim ... lupusuk.org.uk/benefits/

[Bee1011 in reply to fabwheelie]

Thanks for your advice there is a lot for me to think about there.

Hopefully it won't come to having to leave work, it's early days for me but once I know what is wrong I may be prescribed medication which helps me in day to day life.

Thanks again for replying and for the information you provided.

[fabwheelie in reply to Bee1011]

yes best wait and see what diagnosis you get, how treatment works etc. Pain meds and physiotherapy can make a big difference in managing pain, and don't be surprised if Drs suggest "gentle exercise" ... it does actually work to help keep you going

The charity Lupus UK lupusuk.org.uk/ are a great source of help, advise, leaflets etc and even do a DVD for newly diagnosed.

If you have bad fatigue two of the best things you can do are

1- try to get a good sleep regime and accept that you may need more sleep than a "normal" person (for example I need a minimum of 10 hours sleep or I just don't function well)

2- Pace all your activities, all the time, factor in rest, and STOP before you do too much. For people with chronic fatigue, lupus etc, we often refer to ourselves as "spoonies" based on "the spoon theory" which is a good way to help you realise what energy you have, how to pace yourself and can also be useful to explain to others ... butyoudontlooksick.com/cate...

Good luck in your journey

[Paul_Howard Partner LUPUS UK]

Hi Bee1011 ,

Hopefully after you have a confirmed diagnosis for your symptoms and a treatment plan you may start to notice an improvement in your symptoms and how well you can manage. This may take some time, with some treatments taking around 3-6 months before they are effective.

fabwheelie has given you loads of brilliant information and advice! I would like to add one further article for you to take a look at. We recently published a blog article about managing finances with lupus which covers everything from work, benefits and insurance. You can read it at lupusuk.org.uk/managing-fin...

[Bee1011 in reply to Paul_Howard]

Hi Paul

Thank you for the further advice it is really helpful I will have a good read of the article you attached I'm sure it will be very interesting and useful.

As you say once I have a diagnosis I think I will feel better and be able to move forward rather than second guessing things.

The gp advised I can go online or call for cancellations but there hasn't been any so far. The gp advised the antibody that was high was the Centromere Antibody but again that means nothing to me. I will wait to see the rheumatologist and see what they say.

Hopefully in the future I will be able to offer people help and advice but at the moment I am reading up on it all myself.

Thanks again

Jo