Lupus and lighting at work

[MandaM]

Hi, I have SLE and one of my involvements is my eyes. Super light sensitive. I get Scleritis, Iritis and viruses in my cornea. I have explained loads at work about being able to control my working environment by limiting light getting into my eyes. Blinds were lived from elsewhere to cover the super huge Windows, they almost fit but better than nothing. Problem is the lighting. LOTS of large square boxes with tube lighting in each one. It's leathal to my eyes. As I've been off sick for 10 weeks I'm being kept to office duties or clinics in tiny rooms with horrific amounts of uber strong lights in which I can't control. This immediately has triggered my chronic eye condition plus given me migraine where I vomited once home, and has made me dizzy and nauseous every day. Normally I'm out in the community and can control the lighting in rooms I use. What can I do? They won't let me turn off the lights in the office as others want them on.

[Mifford]

It might be worth getting in touch with Access To Work with the DWP. They will assess what you need in your working environment and can provide funds towards equipment to solve problems. I run my own one person company and profit is below their minimum so didn't have to contribute on mine and they've provided me with a new chair, a roller bar mouse to stop my wrist pain, foot rest, they've put filters on my windows, we can't find a light solution for me at home but would help if I can, sorted me with specialist glasses that have copper mesh to help diffuse the light which help a LOT with my light induced migraines, switched my night storage heater to a state of the art one (that one they don't usually do but I managed to explain to them that my unique combination of problems meant it was genuinely a piece of disability equipment for me) and even pay for my filing clerk to come in once a week to help me with all the stuff that causes me pain. It's nothing like the DWP when dealing with benefits and are fantastically helpful - at least in my area they are. It doesn't run as smoothly as it used to as it's been subjected to cuts but still a fantastic scheme.

[MandaM in reply to Mifford]

Thank you so much for your info. How I've heard about these copper glasses but not been able to find out a single thing about them. Can you enlighten me? 😊

[Mifford in reply to MandaM]

We happened to find an optician near me who make them but I don't know of anywhere generally that does them. I think I'd take their claim about lupus on the webpage with a pinch of salt as I think that's based purely on the fact I've tried them and I have lupus! They may have had a few people in since who it's helped but when I got mine a few months ago there was certainly no medical evidence that they gave me to back that up. Anyway the opticians are kingshillopticians.co.uk/co.... Be warned they are REALLY expensive too - mine were around £500 but they really do help with my migraines when I'm working and I see colours differently to how I used to.

A more cost effective option to see if it'll help would be glasses from the RNIB - they helped loads when I tried them but I couldn't wear them as the sunglasses have nickel on the arms and I'm highly allergic to it - got to love the irony. The amber only let 19% light through but I found them a bit bright, I think the grey may be softer and let less through but I can't see on the site where it says it. shop.rnib.org.uk/mobility/e...

Good luck

[MandaM in reply to Mifford]

Thank you for being so helpful. 😊

[Paul_Howard Partner LUPUS UK]

Hi MandaM ,

If you have a look at our blog article about lupus and light sensitivity you will find loads of helpful information about products that help filter artificial lights and how your employer can get assistance with making adjustments for you; lupusuk.org.uk/coping-with-...

[MandaM]

Thank you Paul. 😊