I am now 11 months in to my journey with scleritis. I never in my wildest dreams thought for one second my eyes would still be flaring. I thought a few weeks on the meds and it would all be over.
Approximately 347 days later I still have severe eye pain, redness, photophobia and swelling around the eye, I always look like I have been punched in the face. I don’t want to look people in the eye when I am talking to them in case they think I have been bashed up. Some days are worse than others but it’s a constant no relief kind of pain of varying degrees. The pain of scleritis is intense and relentless and unfortunately chronic headaches come with the eye pain.
I have been admitted to hospital, been on steroids and chemotherapy drugs, had many eye injections and had loads of tests and they are no closer to finding a cause or a resolution. The next step up from the immunosuppressant chemo meds are biologics. Biological products often represent the cutting-edge of biomedical research and, may offer the most effective means to treat a variety of medical illnesses and conditions that presently have no other treatments available.
I am HLA-B27 positive which is a genetic thing that makes me predisposed to getting autoimmune diseases like scleritis. There may not be an underlying cause but my GP feels that there will be something there because whatever we throw at it doesn’t fix it. It also brings in to doubt my fibromyalia diagnosis ….. are these symptoms part of an underlying disease and not fibromyalgia at all? I think it probably is and they just haven’t figured it out yet. Wish they would hurry up and find something I am so over the pain every day, not to mention that my eyes look a mess.
Unfortunately I also have corneal neovascularization in the left eye, which means I have blood vessels growing into the cornea. The cornea is meant to be clear so the blood vessels are causing hazy vision almost like a cataract. This means that I have to wear my scleral lens in the right sore eye to be able to see (keratoconus has made my vision extremely bad 20/450). Not ideal to wear a lens in a sore eye but I have no choice I can’t afford to take 347 days off of work!
Fortunately throughout this journey my mental health has stayed pretty stable, could be a whole lot worse!
All I can do at the moment is continue with the painkillers (endone – oxycodone) and try and get through each day one at a time. I have a feeling that this journey is going to go on for a while yet.