I wanted to blog about diabetic retinopathy and my red white and blue vision... past present and possibly future.
Part one - A non diabetes related issue diagnosed my retinopathy.
In September 2009 I suffered from terrible headaches which lasted for 2 weeks - non stop they pounded on my head day and night, making me nautious, dizzy, tearful and obviously quite distressed. You'll all be relieved to know that this part is not diabetes related!
After the the first 2 days I went to my GP and was told to take pain killers. I had been doing this anyway, but I didn't want to go against the advice of my GP, so I continued with the pain killers. I returned days later quite desperate but was told that pain is a good thing, that I needed to know it was there to be able to assess if it was getting better. I repeated the visit again a few days later with a swollen eye (Quasi Modo style) and was given cream.
After 2 weeks I finally gave in and went to A&E. I had an MRI scan which showed that I had a lump of swollen tissue behind my right eye which was so large that it had worn a hole through my skull and was pressing on my brain. So much for the eye cream eh?! I was told that cancer was a possibility, and a biopsy would be done to diagnose. After the biopsy the headaches left, the swelling settled, I had a funky zig zag scar on my eye lid (still got it) and I was referred to a specialist eye hospital in London called Moorefields.
So where does my diabetes come into this? I was told when first admitted that I had early stages of retinopathy and I would need laser treatment. I was told that the swollen tissue could be diabetes related, but it might not be and it would be assessed. I didn't see anyone for my diabetes while I was there or after I was discharged. Naievely I thought that if people weren't worried enough to see me or talk to me about my diabetes and the first stage of retinopathy, then I didn't need to worry. Naievity is the bigggest regret that I will ever have.
Back and forth I went; seeing different specialists, having my eye poked and prodded, photos taken to be used for educational purposes. scans, blood tests etc but nothing came of it. The last corrospondance that I had was a letter that I was copied in to. It explained that the nature of the swelling was extremely agressive but it had gone as quickly as it had come. I wasn't diagnosed - no one knew what it was, and that was it. Done. Finito. Months of panic stress and worry were followed by silence. Not complete silence though, I was still reviewed every six months - eyes checked, progress was made and no more talk of retinopathy. I thought I was in the clear. I thought I was invinciable!
Little did I know that my journey was only just beginning...