Tag Archives: extreme photophobia

A Very Unhappy Eye!



I will keep this one short because I’m not feeling the best ……

Saw my eye doctor this morning.  The scleritis is still very active in my left eye so they gave me another injection.

It has made my eye look like a mess, my sclera is now completely dark blood red and swollen and so painful.  It looks like it is going to explode.   No chance of getting a lens in that eye today so I am feeling all crooked and uneven because I can only see out of one eye.  Makes working tricky!

Hopefully this injection will do the trick and calm the scleritis down.  I’m currently on Methotrexate, Prednisone, Predforte drops, and now this latest injection.  Surely something has to get it under control soon.

I spoke to my doctor about the sensitivity and photophobia and she feels that it is bad because the scleritis is active.  Oh joy, so that won’t change until the scleritis clears up.

Gotta love that roller coaster that I keep on riding!


My Crazy World!



So this is how crazy my world is right now …..

I wear contact lens so that I can see, I wear glasses over the contact lenses so I that can see better, I wear sunglasses over the glasses and another pair of sunglasses over the whole lot!

The photophobia is so bad the only way I can get myself out of the house in the morning to go to work is to wear two pairs of sunnies, totally crazy right.

It was my partners bright idea to wear two pairs of sunnies and it really did make a huge improvement.  Still a bit glary but so much more comfortable, I could actually drive with my eyes fully open!

Eyes are looking a little better as they are not so red but they still hurt.  Since I got the scleritis my eyes are much more sensitive and I am struggling to wear lenses.  By the end of the day my eyes are so over having those plastic discs shoved in them for extended periods.  Not much I can do about that though, with the keratoconus I have no option but to wear lenses as glasses on their own don’t give me any useful vision as my cones are just too steep.  Wonder what options I have for not wearing lenses?  Probably just corneal transplants, then I still might have to wear lenses, no guarantee I could just get away with glasses.  Will need to speak to my eye doctor about that.

What I need is for the doctors to perfect a full eye transplant, which would be amazing.  I wonder how many years away that is?  Think I would put my order in for a pretty pair of blue ones!

In the meantime I will continue to battle onwards as I sure as hell won’t let this thing beat me!

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