How to cope and survive

When I was diagnosed with this condition my cranial pressure was so high I was in a coma and it is the most frightening thing i have ever had to come to terms with.
I have had 64 Spinal Taps/Lumbarpunctures and I am only 19. As well as this I am not overweight or was I on the pill when I was first diagnosed with the condition.
I was on steroids and other medications to try and combat the damage to my eyes as the condition had actually made me completely blind in my left eye and partially so in my right. However, I am now living my life as a 'normal person', if there is such a thing!
The best thing I found to combat the fatigue, the deafness, the blindness and the feeling that I was not actually alive is to loose weight. I stuck to a fruit and veg only diet for a while, to be honest though feeling as I did I didn't want to eat anyway. I was not overweight but it still worked. I found a dairy free diet helped with the migraines as well.
Unfortunately the spinal taps have damaged my back so I now see an osteopath but I am still unable to excercise due to the pain. I have had the condition for four years now and everyday it gets a little bit easier and a little less scary. Yes it will never completely go and the migraines often come back and my sight gets blurry agin but I have only missed 15 days off College/Work in the last two years.
For all those out there.... take a deep breath, it will get easier. If anyone wants any directly personal advice fel free to contact me as I have been through it all and had numerous arguments with doctors about what I thought was best in comparison to what they felt. Remember they may have the medical experience but you know your body better than them, don't let them boss you around, instead listen and discuss ideas and options.
Take Care.
xxSarahxx
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