Just a little background, I was recently diagnosed with solar urticarial after phototesting at Guy's and discovered that this is to ALL visible light across the entire spectrum and not just UV unfortunately. In addition they have commented that the severe reaction I get to UV light in particular such as bad migraines, breathing problems increased, dizziness, joint pain and swelling, being sick and severe fatigue are due to highly photosensitive lupus which won't be helped by the antihistamines that I am taking and is a separate problem. It explains a lot and I'm now in the process of absorbing how much of an impact this has on my life (in very small steps to make that manageable!) and trying to see how much I can minimise the reactions in a way I can live with to make that impact something I can cope with mentally, emotionally and physically.
As part of that I have made a lot of changes to my house now with a specific orange film on the windows that filter out the light spectrum up to 500nm and reduces the level that I react to and have had a lot of help from Access to Work with providing specialist glasses when I'm working on my laptop and flipping expensive sunglasses that block a large spectrum of light for the rest of the time which have had a significant help on my migraines etc. I work from home thankfully so the challenges of going out to work aren't there at least.
Anyway, one area that we have become totally stumped on is the question of lighting. At the moment I have enough incandescent light bulbs that I have been able to use these rather than energy saving bulbs until now and the filter film on my office window means that I can now open my office blinds for the first time in 15 years without feeling like I have sunburn and therefore don't need to have the lights on as much as previously. In the living room we put on lamps in the evening that are placed well away from me rather than having overhead lights on and that also helps but I can't do this in my office for work as it doesn't provide enough light - especially now we are coming into the winter months with it getting dark so much earlier.
I know that there are fluorescent tubes that can be fitted with filters for this problem and so on but because my office is a spare room in my house I don't really want to be putting up fluorescent lights - daft I know but I've spent years working hard to make my house nice and the idea of putting in something that I find really ugly just grates with me and I find the idea really depressing.
After doing as much research as I can online I've now got it pretty well fixed that the incandescent bulbs are the least challenging for me but obviously my supply will run out over time. Next option appears to be LED bulbs. With this in mind I've come up with information regarding the Hive lighting system where they have brought out a range of bulbs which can change colour or can be set from white to warmer in stages and dimmed to specific levels etc. This struck me as possibly being my best solution as I can dim them to the optimal point to provide the least challenge but enough light for me to work and set the colour warmth to ensure that they aren't bright white which I find very challenging. Or I'm wondering if getting the coloured bulbs and setting these to something in the amber spectrum (if that's possible) would help. This would also enable my other half to be able to change these to something less oppressive for him when I'm not in the same room which would be good as at the moment he feels a bit like he's living inside a lucozade bottle whenever he walks into the house bless him.
I can't find out any information as to the level of UV emitted by the HIVE bulbs though so wondered if anybody else with photosensitivity has tried these and whether they had any success or what other solutions people have found that solve the lighting problem as incandescent bulbs slowly disappear?
Apologies for the long post - I do try and keep them short I promise! Any help anyone with experience of severe photosensitivity can give is VERY much appreciated as the whole thing is just a bit of a nightmare at the moment to be honest.