It's been 3 months since I returned to work (university lecturer) following a 4 month sick period since being diagnosed with SLE in August. I think I am doing well, good and not so good days in relation to fatigue but I am currently riding the storm and have managed to stay in work so far. The main issue for me is light sensitivity which can make me feel unwell. I have got a window film which filters quite a bit of light out of my office, and I never have the light on (lucky I work in an office on my own) but as a lecturer I work in many classrooms over two Universities. The lights and projector lights really are troublesome. I love my job but I am not sure if there is any solution out there, or if anyone has anything to suggest?
Bright (but not to hurt you) blessings
TTxx
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Tripitaka
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How much time do you spend on different activities? I wonder whether the kind of lights in the rooms you use could be modified/ dimmed? Students might enjoy lectures in a dimmed environment
Hi Cathie, recently I started just turning off some of the lights during my lectures which has helped. I have learnt not to ask "Do you mind if I turn off some lights" as this gives the opportunity for people to say YES. So I just take control now and I find it quite empowering ha!
Hello TT, I'm sorry you're struggling a bit at the moment. Did you know Lupus UK have a light sensitivity support group? lupusuk.org.uk/eclipse I think you'll find is an excellent source of advice, information and support. Good luck. Bronagh
Hi TT,.I am going through exactly the same thing with reactions to very harsh ceiling lighting & light from massive windows in some of the venues that I work in across the NHS Trust I work for. Employers have a duty of care to ensure your working environment is safe for you to work in and does not cause you to become sick and therefore go off sick. The problem is there's a buzzword involved here...REASONABLE! What is termed as employers doing what they consider is reasonable to change things. It's very easy that they can come out with you aren't suitable for the job if you can't work to meet service needs. I'm going through all this lighting business at the moment. I'm involving access to work but my employer has said they need advice on this and may not allow the assessment to go ahead as this will cost money to put things right. I'm with the GMB Union now. I'm seeking help and advise to protect me from my employers getting any ideas. I've worked for this trust for 14 years without trouble before coming to my current dept. I'm trying to get windows sorted where there is a problem, lighting I can't sort though. I'm trying to get a grant for copper mesh glasses to protect my eyes. I've asked not to be put in 2 venues that cause a problem. It's a tricky one TT. Paul here might have some advise also eclipse. If you are able to control the lighting in the lecture theatres by turning the odd few off then that's all I can come up with. Lighting being full on then off/on/off/on is a killer. I'm at home in bed now suffering because of this same thing. All the best. Hope you find a solution. X
Access to work sorted my copper mesh glasses without any problems. I think it was because they were pretty much exclusively for work as I have special sunglasses for all other times. They met the majority of the cost for those too. They told me they treated it the same as glasses for Arlen Therapy and they usually ask for a contribution for private usage. I had a really nice assessor on the phone and I told him to be honest the copper mesh I felt were all for computer work but I didn't think 50% contribution from me was unreasonable for the sunglasses. He told me he thought that was very generous and I think it helped the claim go through without problems and he didn't push on the copper mesh ones at all because of it.
Hi, although not in the same situation, I was a school nurse and taught PSHE in various schools every day. So apart from my own office I couldn't adapt what was available in schools with lighting and technology. I used sun factor 50 every day. covered my skin. I worn reaction lens to protect my eyes. I tried to make school aware of my condition so I could be prepared. I think you should speak to the uni occi health to see if you could use certain rooms which are prepared to adapt to you. This is part of disability and diversity which they would do for students. Speak to you rheumy for advice or the sheets this site provides so you can show them. Also if you have a union ask for their support. good luck.
It is great to hear that you are back at work, doing a job you love; according to consultant lupus nurse Sue Brown, this is a great motivational factor that is known to improve health by increasing both self-esteem and wellbeing.
As you tend to travel between two universities and teach in various classrooms, it is advised to speak to the HR department of both universities in order to have access to an occupational health practitioner/therapist. You may be asked to have an assessment so that they can fully understand your ability to do your work and provide you with appropriate support. You may want to take a look at our ‘When an Employee has lupus’ guide or perhaps take a copy with you to show to the occupational practitioner/therapist: lupusuk.org.uk/wp-content/u...
Have you thought about asking whether one room can be catered specifically for yourself in both universities? And perhaps ask for all your lessons to be held there? We published a guide for people with lupus who are wanting to or already work, which I hope will be of help to you: lupusuk.org.uk/wp-content/u...
As for the light sensitivity you are experiencing, I would suggest having a read of our blog article which includes information about light sensitivity and work: lupusuk.org.uk/coping-with-...
Wishing you the best of luck, let us know how you get on.
Thanks everyone for your truly helpful replies - I will go through them all one by one and see if I can go with the suggestions put forward. So far my immediate working team have been helpful and so has occ health, however I am aware that I am in this for the long haul. Light sensitivity is more than a pain in the eyes!! Still on wards and upwards....got to stay positive as I love life XX
I have noticed also that some of my colleagues will turn their office lights off before I arrive for a meeting - I think this is so considerate. I am very grateful for their support
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