I was diagnosed after being rushed to hospital with thoughts of a brain tumour. I was scared till no end. Then finally I got a name BIH or IIH. But that was all no explanation just the name but within days my eyes kept getting worse and the pain oh not good! Every visual field I had kept getting worse. It was 13 days after diagnoses I was transferred to a major hospital for an ONSF which ended in having no sight in my left eye.
The next 4 years were a blur, in and out of hospital shunt after shunt, it took time to find a doctor who listened but I did. This new doctor listened to me, heard me when I said things weren't right and things started to look up. Alas being well didn't last and I ended up with a staph infection which near killed me, it was a wakeup call that life should be taken for granted and to quit moaning about the spot I am in and just live. That I have done since as I took the whole mantra of getting up and enjoying what I have got instead of mourning what I lost. Yes I have been in and out of hospital, had numerous surgeries but my good days are good days and I live for those.
I now have a pleural shunt which drains into my chest cavity, I have gone and lost half my body weight, 50kg, and done everything they told me to do. The weight loss did not help my IIH but it help me to concentrate of the mental factor of pain with IIH as I took out the mental issue with my weight and body.
After years of letting IIH rule me I now rule it and I have taken my life back. I am now in University studying Social work and Psychology; I get out and enjoy every good day, and work through the bad. If anyone can take anything from this is to enjoy the small things, stop and smell the roses so to speak. Take those good days and run with them and do not dwell on the bad days.