Living like every day could be your last!

By Theresa, Idiopathic Intracranial hypertension, United Kingdom, April 5, 2019

Making the most of life

I have a rare disease that suddenly changed my life. One day I was me Theresa the next I was someone I didn’t recognise, who I did like or who I wanted to be. It changed me I was no longer the person I once was nor the mother I was.

I used to play around have fun. Go to the Gym and loved to run!

But now I have endless appointments tests, take medications  just to be able to keep the crushing headaches at bay but living in constant fear that the pressure will build back up and a Lumber puncture will be needed. The biggest fear I face is that one day this disease will rob me of my sight, this is something I fear every night when I go to sleep and thank my lucky stars when I wake to find it’s still there.

So many days I can’t cope and I start to cry. This is such an inconvenience and I want to know why?!

I did not ask for this and would gladly return to the old me. Except, I do not know where it came from which is a real concern.

My Neurologist does her very best. Some days are really not so bad and others a horrible test.

My family stands brave and takes this journey besides me. But I know there are times this is really hard to see.

I could be sad and oh so depressed! But my life is worth so much more and I refuse to be obsessed.

I believe one day there will be a cure for me. Until then I’ll go dancing in the rain and savouring every memory I make because what I have learnt is life is precious.



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