The Ongoing Hell of Photophobia



Photophobia is not a fear of lights, it is sensitivity to light.  I thought I had bad photophobia with the Keratoconus but it has got so much worse with the scleritis.

I am really struggling to get through my days from driving to and from work and even just being in my office at my desk sitting next to a window or looking at my computer screen to do my work.  My eyes feel like they want to roll back in my head and pain shoots through them like lightning bolts.  Sounds a little far fetched?  Well it’s not, that’s exactly how every minute of my day is at the moment.  I am in so much constant pain I can hardly stand it.  I have no idea how I am keeping my eyes open and getting the strength to carry on but somehow I am.  Must be the meds!

My eyes are hyper sensitive at the moment and regular sun glasses are not cutting it.  I need something heavy duty and really dark that cuts out as much glare as possible.  I have found a couple of options that look like they might be ok in the States but nothing locally in Australia so far.   Need to find out if they ship overseas and if so how much.  They normally charge like wounded bulls to ship to Aus from the States so it could be exy.

I don’t feel like I am getting much support and understanding from my eye doctor, I told him yesterday about the extreme photophobia and he didn’t offer anything in the way of solution.  Even a little bit of sympathy would have been good, better than nothing!  Looks like it is up to me to sort out my own problems!  I am seeing my lovely & very fabulous GP next week; I will have a word to her to see if she has any thoughts on the matter.

The eye redness has almost gone (until the next flare up), but the scleritis is still active, so to anyone looking at me my eyes look normal.  Underneath “normal” there is a whole host of things going on to cause pain and misery.  Sometimes I wish I had an illness that people could see so that they could see that I’m not bunging it on, having an invisible illness is no fun at all!

Feel free to give me sympathy …….. hehehehe


2 responses »

  1. Hi Dawn,

    So sorry to hear of your photophobia problems. I don’t have any solutions unfortunately but heres a big hugggg that will hopefully make you feel a little better.



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