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.

Theresa.

-Liz 

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.
X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.