Having a long-term illness like lupus SLE can mean that you’re entitled to some benefits. This can be especially important if you find yourself too ill to work, but finding your way through the benefits system can be a nightmare at a time when you may be feeling to ill to do anything.

One benefit to be aware of is PIP (Personal Independence Payment) previously Disability Living Allowance.

Personal Independence Payment (PIP) helps with some of the extra costs caused by long-term ill-health or a disability if you’re aged 16 to 64. You could get between £21.80-£139.75 a week. The rate depends on how your condition affects you, not the condition itself.

This benefit is not means tested and does not depend on NI payments, but you will undergo an assessment to see if you qualify. It’s tax free and if you qualify it’s paid if you work or not.

See this Government website for more information about it.

The Benefits and Work website and forum is a really useful resource when finding your way through the application process for PIP and other disability benefits.

Greater work life balance

Those of us who have had lupus for a number of years now, have come to realise how important it is to try to get a work life balance. This can be very difficult when we’re used to rushing around and there’s a lot of pressure to keep up in today’s society. However, conditions like lupus make many of us stop and re-evaluate our lives. For most of us there is no choice, but to slow down and learn to pace ourselves. This may mean we have to decide to prioritise what we get done each day and some days this may mean complete rest and nothing gets done! Part of the readjustment may be in accepting that this is okay.

For those interested in finding out more here’s the Guardian’s Top Ten Tips for a better work life balance (it refers to those working, but can be applied equally to those who may be looking after children, parents or managing a home). For balance! Here’s Netmums 10Tips for a work life balance too.

Work Life Balance

We had a good turn out for this month’s coffee and chat. Nine of us came along to The Courtyard Restaurant, New Road, Brighton to share ideas, discuss different treatments and chat. We talked about -Naltrexone, that has been approved for treatment in opiate addiction for a while, but in lower doses has been studied in the treatment of MS (which is also an autoimmune condition) see this MS society link for more information. We also discussed how important many of us found getting a work/life balance is, in managing our health.

We were also very happy to welcome two new members to the group.

With summer round the corner, remember that it’s even more important for people with lupus SLE to protect themselves from the sun and that high factor sun lotions are available on prescription to people with medical conditions like lupus.

April Showers!

Another successful coffee and chat at The Courtyard Restaurant a few of us met up again to discuss different medications and share our experiences of living with lupus.

Remember to look at our Facebook page which has lots of useful information about lupus, its treatment and ways to manage this lifelong condition. You don’t have to be on Facebook to view it!

We met again for the first time this year at The Courtyard Restaurant. This was a welcome chance to meet up, chat and share our experiences of living with lupus. We were delighted to welcome two new members to our March meeting.

One of our newer members discussed her experience of taking Hydroxychloroquine over a number of years and the importance of being aware of the very rare, but possible side effect of retinopathy (damage to eyesight) that it can cause in some people after prolonged use. It is recommended that anyone taking taking Hydroxychloroquine, have regular eye checks. The Royal College of Opthalmologists (RCO) recommend an annual eye review, checking visual acuity and assessing for blurred vision with the reading chart and to advise patients to report any disturbed vision.

She has very kindly given us an article on the subject which we will pass on to anyone who is concerned about taking Hydroxychloroquine and the effects it can have on the eye.

“Jubilee Library, Jubilee Street – geograph.org.uk – 231185” by Simon Carey. Licensed under CC BY-SA 2.0 via Wikimedia Commons –

We began with an unexpected change of location for our first coffee and chat of 2015. The Courtyard Restaurant has changed it’s opening time to 11am and was also opening late on this Friday, so we had to move the formal meeting and the coffee and chat to the Jubilee library. The staff at The Courtyard Restaurant, kindly redirected any new members to find us in the library.

There were eight of us at the coffee and chat, including two new members who we were very pleased to meet and welcome to the group.

We had a lovely Christmas meal together on the Friday 4th December, a few of us met at Pinocchio’s on New Road.

This was the perfect opportunity for the group to relax and enjoy a meal together before the Christmas break (we meet again in February in the New Year). You can see more photos on our Gallery page.

Christmas Meal

 HAPPY CHRISTMAS TO YOU ALL!

November saw our last coffee and chat of 2014. The group’s Chairperson had stepped down from the role in October, so a vote was taken at the coffee and chat to elect a new Chairperson for the group. The role of minutes secretary was also put up for nomination at the meeting. Eight of us got together for this coffee and chat and we were very happy to welcome another new member to the group.

We had a great turnout for this month’s coffee and chat and we were delighted to be joined by two new members to the group.

Amongst other things we discussed how the colder weather has been affecting us all and this year’s Christmas lunch which will take place on Friday 12th December. This is a great chance for us to all to get together, relax and have some fun.

We had a great turnout for this month’s coffee and chat with fifteen of us coming along. We were delighted to welcome another new member to the group too.

This month we were also joined by Dr Sandra Sacre and her PhD student Ryan Thwaites from Brighton and Sussex Medical School. They explained to us the work that they’ve been doing on Lupus SLE and Rheumatoid Arthritis, using blood samples you may well have donated at one of your visits to the Royal Sussex Infirmary (you’ll know if you have because you will have signed consent forms with a nurse).

Sandra and Ryan explained to us some of the interesting findings they’ve already made in their study- The AIM (Auto Inflammatory Mechanisms) study.

We all found the talk very interesting and were all able to ask lots of questions at the end. We’d like to thank Sandra and Ryan for coming and look forward to hearing more about their research next year.