I thought having keratoconus was miserable. Having to wear contact lenses for extended periods, always having tired and strained eyes and struggling to get good vision on a daily basis. Sounds pretty miserable hey.
Try having chronic scleritis, it is a total killer. I’m going through my latest flare up and I feel absolutely horrible. The Methotrexate has been amazing for my Fibromyalgia pain but hasn’t done much for the scleritis, so I’m back on 25mg Prednisone daily until I see the Rheumatologist again.
I am HLA-B27 positive which means I am predisposed to getting autoimmune diseases. Scleritis falls into this category, alongside other inflammatory diseases such as Rheumatoid Arthritis and Ankylosing Spondylitis.
The pain of scleritis is intense; it consumes you until you can’t think about anything else. It is a deep boring pain that just doesn’t let up. It saps your energy and leaves you wrung out like a wet rag. It has reduced my ability to concentrate and made me much less efficient at work. I can’t take a heap of sick time off every time I get a flare up so I have to suck it up and get on with it. Endone (Oxycodone) has become my friend.
It’s funny; people at work can’t even look me in the face when I am having a flare up. Looking at me makes their eyes water and horrifies them. My eyes do look pretty crook so I don’t really blame them, but it is kind of weird when someone is talking to you and looking everywhere but at you!
The scleritis seems to have made my right eye much more sensitive to wearing a lens, even when my eyes are good. I spoke to my eye doctor yesterday about my options and he feels that my eyes are too far gone for either intacs or corneal crosslinking, so if I want to try and get better vision, and to have an easier time getting fitted for a lens or attempting to wear glasses the only option left is to have a corneal transplant. I am seriously thinking about this but my eye doctor won’t even consider it until we get the scleritis under control.
Two eye doctors have recently examined my eyes in the absence of my own eye doctor and one thought I was fascinating and the other very complex! Would rather just be normal!