Monday 28th march 2011

day one of my blog, not sure what to write, so just bare with me, today is also day one of my diet, which im trying to raise awareness and raise money for the IIHr, because little is known about IIH, and at present no "cure", which if im honest scares the heebee geebees out of me.

Well this morning i weighed myself and was 14st 1lb, which isnt too bad seeing as in jan 2011 i was 16 st, but i have stayed this weight for weeks now so i am trying to add more activities into my daily life then fingers crossed the weight should come off,

I first found out i had IIH in jan 2011 after i went for a routine eye appointment at specsavers, the descovered i had papiledema, which is swelling at the back of the eye on your optic disk, they rang the hospital stright away and sent me in as an emergency, little did i know they were worried that i may have a tumor in my brain, after being prodded by lots of differnt people, and an MRI scan they said it would need a lumber punture to determine what was actually going off, when they did it i had raised CSF then was told i had IIH,

I had never heard of it before and felt like i was the only one in the world with it, they didnot explain how, what,why or what can be done, they couldnt even give me a leaflet to explain what was going on, at this point i had no idea what my future held, it was the singly most scary point of my life, but there was a ray of hope, a lady in the bed next to me had over heard what had just happened and came over to me and introduced herself, she also suffered with IIH, she gave me her name and phone number and a few sites to check out, with out her support i would have gone to bits.

This all happened after over a year and a half of health problems, i was too and from the hospital for checks as i complained about double vision, pins and needles, neck and shoulder pain, memory problems, confusion, i was always brushed of, and sent home, no one thought to do a lumber puncture and see if it was IIH, they decided i could be on the starting path to getting MS so i had spent all this time thinking i was goin mad , that it was all in my head or getting MS, for my headaches they gave me migrane pills, for my sickness they gave me anti sickness pills for my double vision they put prisms in my glasses, but not once did they put two and two together,

Im just so glad i went to specsavers that day as it answered a hell of alot questions for me, yeah and left me with loads more questions but at least now i know its not my imagination,

Whilst i saw my nero all he did say about the condition is it affects women of child bearing age and who are over weight, and if i lost the weight i would get better!

After doing lots of my own research and chatting with others, i have found children teens and men who get this, not everyone is over weight, so i think they need to do loads more reaserch in this.